FALLON MIRSKY

Please help SAVE MY LIFE!

September 29, 2012

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Hi-

 Well… I figured that I would take this opportunity on the plane to fill you in on all that has happened during my stay in California.  O my goodness… what a trip I had.  I thought I would never get home after all that was occurring.  I am still recuperating and still coming off all the drugs, so I don’t know how much I will be able to type and tell you because my hands are not cooperating as of yet (can’t get coordinated typing) and I am still not feeling well.

 What a trip that we had starting from the plane ride to California.  Even though we had a stopover in Chicago, I thought that it wouldn’t be so bad because we weren’t changing planes and therefore, we would definitely not miss out connection. However, little did I know that we were going to be delayed in Chicago because of fog.  So, from having a plane ride that we weren’t supposed to get off the plane because it was only supposed to be like a 20-minute layover, it turned into everyone having to get off the plane because it was more like a 2-hour layover.  The plane ride was so tiresome that dad said that he couldn’t do this long trip anymore.  Never thought I would hear that from dad, but he said that he was literally climbing the walls.

 Well, after the long and tiresome plane ride to California, all we wanted to do was go to our hotel room and relax.  We were supposed to get the same room that we always get because it is the best one for me, as it is right near the soda machine (it is easy to get something to drink and when I am not feeling well, I don’t like being left alone for a long time while dad hikes to get something to drink for me), has a king size bed (so it gives me and my dad more room to sleep and less chance of him hurting me.  After all, I am extremely hypersensitive and any little touch hurts me. He doesn’t mean to hurt me or anything, but tossing and turning is inevitable at times when you sleep even though he tries to hug the side of the bed so he doesn’t have any chance of touching me), has a huge bathroom, etc.  However, this hotel room  was not available for the first night unfortunately.  Therefore, they said that we could go to another room for the night and be switched into that room the following day or we could remain in the room that they would switch us into right then. 

 It turns out that the room that they switched us into was upgraded from a regular room to a JUNIOR SUITE.  It was huge.  It was fantastic.  It had a huge flat screen television, 2 couches, and you should have seen the closet.  The closet was a walk-in closet and it was so big that it looked to be the size of my room at home.  I told my dad that if “snores,” he is sleeping in there for the night.   What a room it was!! Too bad I wasn’t going to be around to enjoy it.  I was so jealous of my dad!

 Well, I went for the first surgery on Monday to put the tubes in me.  Of course nothing with me comes without complications.  I was in a lot of pain and they had a hard time starting the IVs.  The doctors asked me if I wanted to sign a DNR (do not resuscitate) order, but I couldn’t do it with my dad standing right beside me.  Even though I was seriously contemplating it because I am so tired of fighting and my body wants to go already, I couldn’t do it because my dad was right there. I looked at him and I saw it in his eyes that he didn’t want me to do it and since I love my dad so very much, I just couldn’t do it.  I then realized on the way home that if I did sign that order, I probably wouldn’t be here today after all that happened during the trip.  But I will get to that soon.

 So much  was happening that they wanted to “relax” me as much as possible before surgery.  They came with medicine to do the trick, but I knew that once I took that medicine, I was going to be “knocked out” completely.  I told them that I didn’t want to be taken in for surgery until I said “goodbye” to my dad, but they assured me that I wouldn’t be put to sleep with the medicine that I was given.  Yet… who was right?? Due to my extremely hypersensitivity, I am also really sensitive to medicine.  Therefore, I was knocked out like I said I would be and even though they tried to wake me up so that I could say “goodbye” to my dad, they were unable to do so.  So… my dad gave me a kiss and moved me into the operating room to do their stuff.  I was then put on bypass and general anesthesia, and they put the tubes in me. 

 Even though these tubes had less than a 20% chance of working, they were trying this to try to “buy” time because my body is literally deteriorating and dying.  The doctors don’t know how much time that I have left and therefore, they wanted to “buy time” until I got the transplant.  They also wanted to make me stronger because my BMI is only 12.5, and death happens at 12 for females.  Thank goodness I am not a male because if I was, I would surely be dead already because they can’t live below 13.  I barely weigh 70 lbs. and they want me as strong as possible for the transplant as well.  They also know that if I would get sick with anything, I would surely die because I have no “reserves.”  Therefore, they wanted to “fatten” me up so that it would give me a better opportunity to fight these illnesses and overcome the transplant as well.

 Even though the doctors knew that my entire GI transplant was “dead,” they were hoping that perhaps a small portion of my small intestine was viable lower down.  So, they were putting the tubes in me to bypass the esophagus, stomach, and most of the small intestine so that they could perhaps find a small piece that is viable.  If they did find that piece and it was successful (and I accepted the tubes so that my autonomic dysfunction didn’t act up and such), then they would make the tubes more permanent.

 However, the doctors didn’t realize I was as complex as I really was.  In fact, they couldn’t believe it.  I really gave them a “run for their money” while I was here. After the surgery,  I was in a huge amount of pain because my underlying neurological illness spread and worsened.  Anytime there is “trauma” to my body, I risk my neurological illness spreading and worsening. I am already in severe pain 24/7 and it is the worst pain imaginable, you can’t imagine how horrible I was feeling because of the exacerbation of my illness.  They say that my illness is the worse kind of pain ever, as it is worse than childbirth or anything else.

 After the operation, I was in severe pain.  I couldn’t even stand up.  I was so scared because at least before the surgery I was able to stand even though I could only walk on crutches and such.  However, it was at the point now where I couldn’t even stand up.  I couldn’t even get up or down.  I was scared.  The doctors really had to do something because my body was shutting down even more after the surgery and I was just having one complication after another. 

 Due to all the complications that we were having, the doctors couldn’t even start the tube feeds that would possibly “save my life.”  Therefore, they had to do something in order to try to save my life and help the tube feeds.  The doctors wanted to put me into an emergency ketamine coma and therefore, I was transported to the ICU.

 What a week that  I had in the ICU, no matter what they did, the tube feeds wouldn’t work.  They were just having complication after complication.  The doctors said that they never saw anything like this.  They even said that they never saw someone who took as much medication as I do.  I take over 50 pills daily.  Not only was I scaring the doctors, but I was scaring my dad as well. 

 So many things happened.  One thing that happened was that my heart rate dropped so low that they literally had to bring in the paddles to “jump” my heart.  They even did an EKG and it appeared that my heart stopped for a brief time as well.  The nurses wanted to leave the pads on me after that situation happened, but all they had at the time were “adult” pads and it was the size of me since I am so small.  So, in the meantime while they went to get pediatric pads, the left the crash cart by my bed just in case something happened.  I really freaked everyone out.

 Another complication that we had was that my veins kept burning up from the IVs.  I must have had over 20 IVs because they kept being burned up.  The nurses had a hard time even restarting the IVs and even the doctors had to do it too because of the extreme difficulty.  Even the “Crisis” team couldn’t put my IVs in anymore and they are supposed to be able to access anything.  However, with my illness and such, it was really giving them problems.  My veins were so hypersensitive that they just kept “burning” up.  Even when they went to “flush” the IVs, I would go through the roof because of the extreme pain.  The slightest amount of pain to a normal person is like a knife going through me.  It was really unbearable. 

 The doctors were trying everything to try to get the tube feeds working and to get me stabilized because they said my body was literally on “borderline death.”  They decided that despite giving me the ketamine, as I was put back in forth into ketamine comas and then ketamine infusions, they would try lidacaine infusions with this as well.  However when they did this, I was very itchy and they gave me Benadryl to compensate the itchiness.  Yet you will never guess what happened.

 When they did this, it was basically at the point where my body literally had enough and couldn’t do it anymore.  My veins literally all became inflamed and despite the rash that broke out all over my body, the veins turned all red and protruded way out of my body.  I really scared the doctors and nurses because the nurses ran for the doctors and when the doctors came and saw what was happening, they literally took off running out of the room.  The nurses remained my dad and me to try to keep us calm but the doctors ran so fast out of the room that their feet didn’t even touch the ground.  When they came back, they were all so out of breath.  What a sight it was.  I was really having a bad reaction to everything and my body was really going down.  I couldn’t do this anymore.  I literally had enough by this point.  The doctors and nurses all said to my dad that they have seen stuff with me that they never saw before. 

 As I am really ill, the medical team and my dad and me decided that I could come back home for a little while.  I wanted to go home because I knew that I was running out of time and the doctors wanted to do some more “risky” procedures that could very well kill me.  However, with not knowing how much time I have left, I really wanted to see my mom and enjoy some time at home before they try these really “risky” and “intense” procedures.  The doctors would have preferred me to stay because they said that I could “basically die at any minute,” but they understood me wanting to go home and see my family and enjoy myself a little beforehand because the cards didn’t look good for me.

 So, yesterday we had a big conference with the whole medical team and they told me that I would come home for about 4 weeks and then return for more treatment.  They made sure that I knew all the warning signs of when  I really need urgent care and such.  But they said that even though I was going home, they literally feared for my life.  I was so afraid that they weren’t going to let me go home, but thankfully they saw where I was coming from and let me go home.  I was so relieved after they told me this even though I know that I can literally “die” any minute even though I might look and seem perfectly all right.

 When I come back to Stanford in 4 weeks, they will be doing more intensive treatments to save my life.  They might be putting in central lines despite the fact that they really didn’t want to do this because it would probably kill me and such due to the fact that I would most likely get a severe infection and such.  They were also going to put me into a coma for about a week so that they could try to “feed” when I am unconscious. It is extremely dangerous, but we really don’t have any other choice.  If something doesn’t work and work soon, I am definitely going to die. 

 I did tell the “team” at the meeting that I never had such great doctors and felt so comfortable in a hospital.  I only wish that they were all on the East Coast instead.  They are so knowledgeable, have great bedside manners, and really want to help me as a “team.”  I never really had such “caring” doctors.  They are simply amazing.

 Besides the doctors, my dad is really amazing too.  He was with me all throughout this week and I can’t thank him enough for being there for me.  I only wish that I could repay him somehow.  I know how hard it is for him to watch me like this and I know how hard it is for him to get away from the business because without him being there, the business really does suffer.  Without him there, no one is there to “run” the company and no business is being brought in or being done.  Therefore, no money is being brought in to pay the bills and not only does it hurt my dad’s business, but it hurts my family as well because we depend on the business for income.  If the business hurts, we hurt.  That is why it is so imperative that we receive help and support from people because we really can’t afford these treatments anymore.  It has gotten to the point where there is such a financial burden that unless I get some help from other people, we are really going to have to make “further” cuts.  Even though I was only here in California for 8 days, they want me back in 4 weeks to stay for about 3 weeks.  They said that I am “so sick and complex that they would need that amount of time to even ‘try’ to help.”  I don’t know how on earth my dad is going to pull this off because it is going to be astronomical in cost and my dad will again have to take that much time away from the business. 

 I have the most awesome dad in the world.  He really was a nervous wreck when I was there.  You should see his nails, they are all gone because he picked them down. He was at the hospital every morning from 9 AM to 10 PM.  He even surprised me with flowers and a stuffed animal that looked like my kitty that were supposed to be from my mom and brother.  He even took guard over my legs to make sure that no one touched my legs and even wrote on the board in front my bed “DO NOT TOUCH LEGGS.”  I knew immediately that he had wrote it because when I woke up one time I saw it and I knew it had to be him since the word “legs” was spelled the way it was.  Only my dad would do something like that.  My dad also knew how much I wanted to light a candle for my grandma for the holiday and since I didn’t, he did it for me and put it at my bedside.  I really have the most wonderful dad in the entire world.

 Wanna hear something funny? My dad left the hospital one night and instead of going north to San Francisco, he somehow ended up going South towards Los Angeles.  He was looking and looking for the airport, but he didn’t see it.  He told me that it was so desolate on the highway and there were literally no lights either. He told me that he continued to go and all of a sudden he saw a sign that said Los Angeles.  He knew that he was going in the wrong direction.  He went 35 miles in the wrong direction and therefore, he had to turnaround and come all the way back.  He put on so much mileage on the car that day, as it took him like 70 miles to get back to the hotel.  He really thought that he was going to be sleeping in the car that night because he was so lost.  He literally left at 9:30ish and didn’t get back to the hotel til about midnight.  When he just got back, he just threw the car at the valet person, grabbed a soda, and collapsed in bed.

 So… that has been my time in California.  I can’t wait now to get home and enjoy whatever time I have left.  At least not only do I get to go home and see my mom and brother, but at least I get a few more weeks of eating.  If the tubes would have “worked” this time, that would have been it for eating.  But, since the tubes are out, then I get to eat again… at least for meantime.

 All my dad keeps telling me today on the way home on the plane is that “thank goodness I have you on the plane.  I really thought that you weren’t going to be sitting next to me.”  I really gave him a HUGE scare.  I think I gave everyone a big scare.  We all know though that with everything that occurred, I probably wouldn’t have been here to day if I signed the DNR. 

 I know how much my dad is so scared for me.  I overheard my dad on the phone with someone saying how he didn’t want to lose me.  He told the person that despite all that happens and everything, he doesn’t want to lose me under any circumstances.  He knows that he is “selfish,” but he doesn’t’ want me to go.  He said that he would do anything and everything to keep me here.  I can’t blame him or anything, but I just don’t know how much longer that I can hang in there.  I am really tired.  My body is tired too.  It is tired of suffering and tired of being in pain.

 But… I am now scared because my body is jerking and I am having a really hard time remembering everything that I want to say.  I am also having a really difficult time writing.  I had a hard time writing with a pen, as I had trouble writing my number (couldn’t remember how to write the number “5”).  I am also having a hard time with my hands typing as they get twisted up. I am hoping that it is all because of the drugs still coming out of my system because after all, I was on ketamine for over a week and I only had it off for less than 12 hours.  So, hopefully that is the reason. 

 Well… gonna get going… I am really not feeling well and wanna rest.  I will write again soon.  Thanks again for everyone’s continued support and encouragement.  I definitely wouldn’t have made it this far without you.  I definitely wouldn’t have pulled through this difficult hospitalization without you.

 Love always,

Fallon

 P.S. Guess what I got of course to bring home?  I just had to bring home bread from California because no place has sourdough bread as good as California.  My brother always looks forward to me returning with this bread. I told my dad that when I get better and can eat, the first thing I am going to eat is a California Clam Chowder Soup bowel because it is soooo delicious.  It is bread shaped in a bowl with clam chowder and mozzarella cheese in it.  It is to die for because no other place has chowder and bread so good. 

 

 

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September 23, 2012

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Hey-

Just wanted to write a quick update to let you all know what is happening since tomorrow morning is the BIG day.  I don’t know if I will be feeling up to writing tomorrow night to let you know what has happened and how it all is going, but I will try my best.  However, as soon as I am “up” to it, I will definitely write and update you on how I am doing.  As of right now though, I am extremely nervous and scared.  I am sick to my stomach, but I think that it is because of my nerves.  I really don’t want to be here in California.  I so wish that I was home and didn’t have to go through with this.  But, I know how important these surgeries are.  I know how I am really “running out” of time and how I am really going to die soon if time isn’t bought.  Even though I am awaiting a Multi-organ visceral transplant, which will entail having a transplant of the small intestine, large intestine, stomach, and pancreas, it will be awhile til I get it.  There is so many procedures and stuff to be done (tests and evaluations) before a person can receive a transplant.  Then of course there is the waiting for the organs as well, which in my case is even harder too because I need all the organs to come from the same donor. However, since I am rapidly deteriorating, the doctors fear that I won’t make it to the transplant if they don’t do something to “buy” time because my body is literally shutting down.  If I was a “male,” I would surely have been dead because there is no way possible that a male could live at the level that I am at right now.  Fortunately, “females” can live at a bit lower of a level and therefore, I am still able to survive.  However, “females” can only live til a level of 12 at the lowest, and I am already at 12.2.  So… time is of the essence. 

Not only is time of the essence, but the transplant is also extremely risky.  It runs the highest rejection rate of all transplants.  It is so rare and dangerous that only 8 hospitals in the country actually perform this transplant.  I have to travel all the way to California to have this transplant because so very few hospitals will do it.  Even of the 8 hospitals that do small bowel transplants, there are even fewer hospitals that do the type of transplant that I require, which is the multi-organ visceral transplant.  Most of the 8 hospitals will just transplant the small intestine with the pancreas and/or liver at the very most.  However, like I said before, I am in greater need of that.  Not only do I need the small intestine and pancreas, but I also need a new stomach, and large intestine.  It is also very possible that I need a new esophagus as well because my esophagus is affected by the paralysis as well, as I have extreme difficulty swallowing and such.  But, if I have the esophagus transplanted, that is even more rare and even more dangerous than anything else. 

This transplant is extremely dangerous and is definitely “no walk in the park.”  The doctors know that it is very easy to have a complication during this transplant, as there has not been a single transplant that hasn’t had one without a complication.  In fact, 20% of the cases end up having a massive complication that requires going back to the OR and also might entail never leaving the hospital again.  With just transplanting the small bowel (which is less than the transplant that I need, so it is less risky), the 5-year survival rate is 60%.  So… you can just imagine how hard the transplant that I am going to need will be on me as well as the survival rate. 

Anyway, the doctors want me to be as strong as possible because if I am stronger with more weight on me and with more nutrition, then I will be able to “fight” this disease better and overcome surgery better too.  I barely weigh 70 lbs. and therefore, I look extremely emaciated.  I really don’t have the “reserve” to fight anything. If I get sick or have surgery, it really knocks me out because I don’t have the energy or “back up” to rely on in order to overcome either the surgery or the illness.  That is why partly the doctors freak out when I get sick or need surgery.  They know how much an illness and especially surgery exert on a body as it is, but if you don’t have the nutrition or ability to “fight” it, you are really up the creek. I already don’t have the ability to convert fatty acids into energy and such and therefore, when I run out of energy… that is it.  I also have a hard time getting oxygen into my organs and cells as well.  That is just more reasons why doctors freak out when I get sick.  This is also more reason why I need to have these surgeries that I am having before during this upcoming week and why it is so very important for them to work. 

So… dad and I made a trip to California to have some multiple surgeries done this week in hope that they will work.  I will be going to Stanford Medical Center because they ranked one of the best hospitals in the country.  However, even with the best doctors in the world, we aren’t 100% sure that the surgeries will work.  But, hopefully they will.   I have the best doctors in the world and I love them.  

I am going to have quite a lot done this week, but hopefully it will be worth it.  I know it will definitely be a rough week because surgery isn’t “easy” on anyone… let alone me because of my condition. I suffer not only from severe gastroparesis, but an underlying neurological disease that is also very rare.  I suffer from autonomic dysfunction and Reflex Sympathetic Dystrophy. It makes me extremely hypersensitive and therefore, anything that happens to me is hundred times worse than it would be for a “normal” person.  I am constantly in pain 24/7 and I never get a break. 

Everything that takes place is magnified for me, so a simple needle stick for a normal person is like getting stabbed to death with a knife for me.  A simple cold for a normal person is like getting the Flu to me.  Plus, my disease is already spreading like crazy and taking over.  It affects everything on the neurological system and therefore, essentially my entire body is affected because everything in your body relies on the nervous system to an extent.  Since my disease is rapidly spreading like a wildflower, it has really spread to all over my body and took over.  My disease spreads through “trauma” and therefore, we are really worried that it will worsen and spread even more this week because of the surgeries and such.  Surgeries are one of the most traumatic things that can happen to a person and therefore, it is very probable that it can spread my illness and make it worse.  So, we are crossing our fingers that it doesn’t come down to that. 

Anyway… gosh… what a trip I have had to California.  I really haven’t felt well all day, which really didn’t help the situation.  I have been suffering from the WORST stomach pains.  I don’t know if it is because of my illness or because of my nerves, but I have been doubling over with pains that are really debilitating.  I am also extremely nauseous as well.  Being sick like this on top of how I usually feel so horrible was not good, especially when I had to travel so much today.    But, you know what they say… MURPHY’S LAW… anything that can go wrong will go wrong!!

The trip on the plane was so horrible.  I have had problems this past week with my ears, so traveling on the plane really made them worse.  I was really crying on the plane this time, so for me to do that, it really had to be bad.  I never cry like that on a plane, especially because of pain in my ears.  I have been suffering from bleeding in my ears.  We don’t know where the blood is coming from and we don’t know if it is associated with the bleeding that I am having down below.  I am bleeding somewhere internally in my stomach and/or intestines because I have blood in my stool, but the doctors can’t figure out what is going on because the tests that they have done weren’t really able to be completed.  The doctors couldn’t do a colonoscopy on me because they couldn’t “prep” me.  Since my GI tract is so paralyzed, I can’t drink and take all that laxative prep that needs to be taken.  Even when the doctors gave me an NG tube to prep me for the colonoscopy, they still weren’t able to do it. I am in such bad shape with how paralyzed my GI tract is that they were only able to pour in less than a ¼ of a liter of the “GO LITELY” prep before the tube backed up.  The laxative literally started coming out the same end it was being poured in. So, since this was occurring, the tube had to be taken out and the colonoscopy couldn’t be done.  Even when the doctors tried to see what was going on by doing another procedure that entailed swallowing a camera, it didn’t work out well either because I ended up throwing up the camera.  Nothing passes through my stomach even though the sphincters are wide open and such. Since my stomach is completely paralyzed, there are no “contractions” to push things through. As a result, the camera couldn’t pass through and ended up getting thrown back up.  In fact, there are so many times that I can take medication and even like 12 hours later when I vomit, I can throw up my pills that are not dissolved because they don’t pass through my stomach.  So…. since none of these tests were able to diagnose the bleeding, one of the major surgeries that I am going to be having this week will hopefully do that as well.

Anyway, since I had the problem with the bleeding in my ears, I did go to an ENT doctor prior to leaving for California.  He wasn’t too sure of the cause, but he also told me how congested my ears were as well. He also told me that I had a condition like “eczema” in my ear as well. It turns out that I have an autoimmune problem in my ear too, which makes sense because the disease that I have is an autoimmune disease. The doctor did give me some steroids to take and put in my ear, but we all knew that it wasn’t going to be easy on me when I was on the plane.  After all, they always say that when you have something wrong with your ears (i.e. ear infection) that you shouldn’t fly. 

So, I was really in a lot of pain on the plane. My dad tried to comfort me, but no matter what tactic he tried to help ease the pressure on my ears… it didn’t work.  To think… California isn’t around the corner either.  It is such a long way off, as it is literally on the other side of the country.  I thought we were never going to make it there.  To top it off, we had a stopover, so we had to go up and down more than once, which was the worst.  It was bad enough to have all that pressure and pain in my ears when we were up in the air.  But, when we were going up and down… that was the worst.

I brought my 2 bears with me to San Francisco. One bear, WALLY, went below in the cargo area because he was too big to carry.  Yet, JUNIOR, went aboard the plane with me.  I took WALLY with me before to California, but JUNIOR never went. So, I let JUNIOR look out the window and enjoy the trip.  He really got to experience the trip to California.  I even took pictures of him looking out the window and everything.  He was so cute on the plane.  It was stupid what I did, but what else could you do when you are on a  plane for so many hours?  I had a little traveling buddy with me.

I never had doctors like the doctors I have in California.  Not only are they very knowledgeable, but they are the most caring doctors I have ever had.  They work together as a “team” and they really are in it for the “patient” instead of for themselves and the “money!”  Stanford is ranked as one of the highest hospitals in the country.  Many of the top doctors throughout the country have gone there to practice, as they only take the best of the best.  Not only are the doctors superb, but so is the entire staff… including nurses and everyone else.  Everyone is so caring there. They really want to help you out in any way possible. 

The doctors really go out of their way for you.  I can’t believe how much they “bend over backwards.” Even when they don’t have office hours, they make time for me.  I have even had doctors come back from their vacation earlier than planned just so they can see me.  It really is amazing.  I never had anything like that before.  When a doctor from Stanford says that they are going to call back, you can be assured a call back.  Plus, when you do talk to them… whether it is in an appointment or on the phone… they never rush you.  There is no stupid question for them.  They answer everything and they will take as much time as you need.  It is really nothing for them to spend like 2 hours with me for an appointment.

Anyway, as we were getting closer to leaving for California, the doctors and other people from the hospital were calling me to make sure that I had all the info and to make sure that I didn’t have questions and to check up on me.  I was really surprised that even my head doctor called me this morning to make sure that I was on the plane and everything.  He even gave me his private cell number.  I was totally shocked. 

This trip was not easy.  I thought it would be easier too since we wouldn’t have to change planes and such.  I didn’t think it would be possible to have a delay because of that too.  But, I guess I was wrong.  It turns out that when we got to Chicago, we were stuck.  Even though we didn’t have to change planes, we did have a brief stopover in Chicago.  Well, that brief stopover turned into an over 2-hour stopover.  It was so long that they didn’t even let us remain on the aircraft even though we could leave all our belongings on it.  However, during the stopover, I wanted to charge my laptop since I was using it on the plane. I still had another 5 hours on the plane and therefore, I wanted to make sure that my laptop would make it. However, after looking and then waiting forever for a place to charge my laptop, guess what? I didn’t have the plug to do so.  It turns out that I had the plug to charge my phone and iPad, but I left the plug to charge my laptop on the plane.  So, there went that. The guy next to me was kind enough to offer me his plug, but unfortunately it didn’t fit. 

O wanna hear something weird?  I thought all airports had Wi-Fi for free to use.  Well, apparently the airport in Chicago doesn’t.  I was really disappointed because I wanted to go onto the Internet during my stopover, but I was definitely not going to pay for it.  Gosh… doesn’t it cost enough to fly already?  They charge for literally EVERYTHING!!

Even though I was over-medicated on the plane so that I could get to California, my dad was not.  So, I kinda was relaxed and able to rest on the plane.  The doctors kinda overmedicated me because of how much pain I was in and such.   So, whereas the time went kinda quick for me, it didn’t do so much for dad.  Dad said to me that he “can’t do these long trips to California anymore.”  I can’t blame him because we just about go there every 2 weeks.  When we were like 2 hours into the trip, he was already going bizerkus.  He told me that he was getting claustrophobic with being on the plane so long and such.  He was also freezing because the plane was so cold.  It is like an 8-hour trip to California, so I can’t blame him for being in “edge.”

When we got to the hotel, it turns out that the room that we always get was not ready.  The people that were in the room before were supposed to check out, but they didn’t.  I really liked that room too because it was perfect.  It had the king size bed, which was good because it gave me and my dad plenty of room and less chance of him banging into me or anything.  After all, like I said before…  I am extremely hypersensitive and if he would knock into me or touch me or something, it could really hurt me.  Even though my dad tries to hug the side of the bed so he doesn’t hit me at all, you never can be too careful.  So at least with the king size bed, we have more room.  The room also had a great bathroom.  It really was “accessible” to the way it was set up for me.  The location of the room was also terrific because it wasn’t that far once we got off the elevator and it was also close to the soda machines.  My dad said it was “no big deal” that it was by the soda machines because he is the one that goes to get it, but it really was a big deal to me because when I am not feeling well, I don’t like him to go so far or for me to be alone too long while he goes to get the soda.

But, unfortunately the room wasn’t ready.  The manager said that I can get placed in that room tomorrow though.  But, they of course had to put us in another room in the meantime.  I was kinda upset because of how good the other room was.  So the new room that we were given was an upgrade, as it was considered a “junior suite.” 

Thank goodness they gave us the opportunity to stay in the “junior suite” if we wanted to instead of going into the original room that we wanted because when we walked into that room, I couldn’t believe my eyes.  It was ENORMOUS.  The closet was a total walk-in closet and it was big enough for me to sleep in. It was like another bedroom in there.  I told my dad that if he snores too much at night, I am going to throw him in there because he always ends up snoring and bothering me.  I always end up hitting him throughout the night because he is snoring so much and it annoys me so.  I don’t know how on earth my mom could have put up with it all throughout these years.  I don’t know how she could have gotten any sleep whatsoever, and I even told her that too 

The room has everything.  It has a great TV, a couch, etc.  Gosh… too bad I am going to be spending my time in the hospital because I am sooo jealous that my dad is going to be able to stay here.  My dad kept telling me that he was going to probably sleep in the car outside the hospital because by the time he leaves the hospital at night, it would be too late to go back to the hotel, especially since it is like 1 hour away.  My dad doesn’t really know the way around and therefore, he said that he would sleep in the car since it would be late, dark, and he wouldn’t know the way.  I thought he was only joking, but I am sure now that he has a room like this to go back to… I am sure he will make sure he will go back to the hotel.  My dad always depends on my iPhone for the GPS.  However, my phone will be with me at the hospital and therefore, he won’t have it to rely on. I am sure that my dad really does know how to go to the hospital and back because we have been there so many times, but he just doesn’t trust himself.  He did bring his GPS though, so he should be ok anyway. 

Well… tomorrow is the first of the surgeries.  I am so very nervous.  But…. I know it has to be done.  I have the surgery at 11 AM, and I am supposed to be at the hospitably 9:30.  I am so very nervous not only because of the operation, but I am so nervous for my dad as well because he is the only one going to be there.  I am worried that if something happens, he won’t have someone to support him. After all, I know that if something should happen to me… he would never recover.  When we left for the airport today, my brother and mother were in tears.  They are so scared for the operation as well.  I never saw them like that… especially my brother.  He wanted to make sure that I knew that he “loved me” and such.  Everyone is so very nervous. 

The surgery is extremely risky and since I am so “high risk” as it is, they are putting me on bypass.  So, I am hoping that they will be able to get me off bypass with how poorly my body is functioning.  When I asked the doctors the other day if I am considered “High Risk,” they looked at me like I had a million heads and said, “Someone that is going on bypass is always considered high risk.”

I will be having the surgery that entails putting tubes in me.  They are going to be bypassing my esophagus, stomach, and most of my small intestine.  They are going to hopefully find a small piece of small intestine at the bottom that might be viable to implant the tube.  After the surgery, they will start putting pre-digested food through it.  If I am able to tolerate it and it doesn’t stir up the autonomic dysfunction or the other neurological disease, then they will make it more permanent.  They also have to make sure that it doesn’t form a “bag” or a collection there because my intestines are so badly paralyzed as well.  It is very possible that the stuff being put through the tube will just stay there and form a collection there so I will become very distended and look “pregnant.”  The doctors say that I have less than a 20% chance of this operation being successful, but they have to try something because like I said before, I am running out of time. 

As long as the tubes are in me, I will never eat again. Never will I have another morsel of food in me again.  So, it is very likely that today was my very last meal.  I can’t believe that I will never eat again. It is really bothering me to be honest about it.  I can’t picture my life not eating.  I don’t know how I am going to manage the hunger pains because I know that I am going to be so hungry since feeling “full and satisfied” isn’t just about eating.  People feel “full and satisfied” because they have it in their mouth and in their stomach, so it registers in their brain.  Since I will no longer have that, I will always be hungry.  I really hope the hunger pains won’t be so bad.  I also feel horrible because I would hate to go out and watch other people eat.  It would probably make me even more hungry.  People would probably even feel weird having me around because who would want me to watch them eat? 

So I had my last meal.  I am surely going to miss my ice cream.  That is the one thing I am really going to miss. I can live on ice-cream 24/7.  But, hopefully I will have the transplant really soon and then I will be able to eat again.  You can bet your dollar that when I can eat again, I am going to gorge myself to no end on anything and everything, especially ice cream.

Well, gonna get going.  Going to relax a little because have to leave in a bit for the hospital.  So very nervous.  I have such a stomachache, but I think it is nerves.  I cannot eat or drink anything, not even a piece of gum.  The docs told me that if I have ANYTHING, they will cancel my surgery.  I was originally supposed to go to the floor first when I got to the hospital and then have transport bring me down, but because of my circumstances and how high risk I am, they want me brought directly to anesthesiology and the pre-op area because they want the actual team to do the intake interview instead of messages being relayed to each other.  If I had went to the floor, I would have a different team check me out and such and then they would just give the surgeons and team the info. In this way, there can be no mishaps or confusion.  I just hope they put me out like they always do … with my dad instead of bringing me into the OR and doing everything there.  Usually they do everything and knock me out before I get into the OR so I am more comfortable and at ease because I am with my dad.  Also, it is better because I am so hypersensitive and it makes it easier when they transport me from the bed to the operating table.

Well… gonna get going.  The next time I talk to you I will be somewhat the “bionic” woman.  Please say a prayer for me that I will make it through the surgeries and that I everything will turn out ok.                                                                                                                                                                                                                                                                                                              

Love always,

Fallon

P.S. I have to be ok because they don’t call me WAR HORSE and the ENERGIZER BUNNY for nothing!! “I keep going and going and going!”  My father is already telling the doctors “Not to let anything happen to me because otherwise he isn’t allowed home!”

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September 19, 2012

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Hi-

Just wanted to update because it is getting close to leaving for California and so much has happened since the last time I posted.  So… I wanted to keep you abreast on all that has been happening, so I decided to write now so that it all doesn’t build up into one GIANT post.  I also wanted to share that I ended up saving a person’s life today.  So, just when I thought that I was “useless,” I ended up saving a lady’s life today.  I couldn’t believe what I did.  I just happened to be in the right place at the right time. 

I guess I should begin with the news that I saved a lady’s life because that is not an everyday occurrence.  I really still can’t believe all that has happened.  I just happened to be at the right place at the right time.  Since I am leaving in such a few days for California and will not be able to eat ever again (if all goes well with the tubes and the surgeries in California), I wanted to get my ice cream today.  I love my ice cream and that is definitely something that I am going to miss when I can’t eat anymore.

Ever since I got sick, I have been getting weird visions and feelings.  It is something that only the “dying” gets.  It is really hard to understand unless you are going through it.  Well, I kept getting a feeling that something was going to happen in the parking lot exit of the place that I got my ice-cream from.  I kept feeling that something was going to happen and kept saying how dangerous it is here and such. But, I never really thought my feeling would come true.  Then again, whenever I have these feelings, they do 99% always come true, so it shouldn’t surprise me.  But still… I never expect that it will happen still.

Anyway, I was going out of the parking lot and was the only one around.  I wasn’t really even supposed to be out because I wasn’t feeling well.  Well, a lady about 68 years old was walking on the sidewalk and crossing the driveway of the parking lot to go to French class.  All of a sudden this huge Dodge Ram came and hit her.  I saw the truck come and I was like “he is going to hit her.”  He wasn’t even supposed to be making a turn to enter the parking lot at that area, as it is only the “exit.”  But, he entered it anyway.  I saw him coming and such even though he wasn’t making the turn completely yet because I see things before they happen.  It is really weird. 

Before I could get out of the car to say something to the lady to get her attention, he ended up hitting her.  My hindsight was right all this time.  The feeling that I had all week that something was going to happen was right and the feeling today that he was going to turn and hit her even before he did was right too.  He hit her, knocked her down, and she went underneath the wheel well.  However, not only did he hit her and knock her down, but he gunned the car as soon as he hit her and basically dragged her like 20 feet.  During this time, she was stuck underneath the wheel well.  If he was going 20 mph with entering the parking lot, he then went close to 40 mph once he made contact with her.

 I couldn’t believe it.  I started honking immediately after he hit her.  He dragged her 20 feet and all I could do was stare with my mouth agape.  I thought for sure that she was dead.  She wasn’t even moving.  She was knocked unconscious.  However, luckily there was a cop across the street pushing another car that was immobile.   So when this happened, he came running and called for ambulances and emergency vehicles immediately.  Everyone came ended up coming down from policemen to firefighters to EMT to rescue workers to helicopters to more.  It was a real ruckus.

What did shock me though was that the officer even attend to her.  The guy that was driving the vehicle came out screaming and he went to him.  I was the one that went over to the woman.  I was so shocked that the officer didn’t attend to the woman and check her vitals and everything, but he went and dealt with the man.  I think the man worked for the town and it was a TOWN OF HEMPSTEAD vehicle.  But, I am not completely sure.

I rushed right over to the lady.  She regained consciousness and told her she will be ok. I talked to her and tried to keep her calm.  She knew the day, her name, her age, where she was going, etc.  But, she was really pinned.  She wasn’t in pain at that point, but I think it was because she was in “shock” and because of the pressure of the truck.  She really lucked out because it could have been A LOT worse.  She had lacerations on her head, but they were minor.  I think she had a pelvis fracture. I am pretty sure that she probably has internal bleeding too because of the weight of the truck. But, at least she was able to talk to me.  Another person came over to help me and when she did, I asked the officer for gloves.  I stayed with her and everything until the paramedics, firefighters, and other rescue crewmembers arrived.  However, I didn’t want to remain in the way, so when they came, I left the other person with her since I couldn’t really move around because of my illness.  They had to literally hoist the vehicle off of her and then she was transported to the hospital by helicopter.

Since I was the only one around, I had to stay with the officers and detectives to talk to them and give a statement and everything.  I never saw anything like that.  It was a real mess. The street closed down and it literally took over an hour to get down the street because of the traffic.  The detectives and policemen were extremely nice to me. They all asked me if I wanted to sit in their cars and everything because they saw the condition that I was in (not the healthiest). 

The cops asked me so many questions and I tried to remember to the best that I could the answers.  However, it is amazing how much you don’t really pay attention to when something happens.  They wanted to know such specific info like which way she was walking, the type of turn he made (wide or narrow), did he have his blinkers on, what did his eyes look like, etc.  I gave them as much detail as I could, but I couldn’t remember everything.  

Gosh… when something happens, so many people come to see and watch.  People from everywhere came out to see what happened. Everyone just wanted to know what happened.  Of course since I was the only one around and saw everything, all questions were directed towards me.  I can’t believe how “nosy” people could be as there were even people snapping pictures. One person kept snapping my picture for over 20 minutes.  The cop told him to “stop snapping” but he just moved across the street.  The cops were trying to keep me calm after all that I did and were talking to me.  It did get to the point that with the guy that was snapping pictures, I said to the cop, “I am going to whack that man.” The cop told me “Go ahead, I didn’t see anything.”  That guy was really pissing me off.  I wonder what he is going to do with all the pictures that he took of me. 

Anyway, I really hope that the lady is going to be ok. She was such a sweet lady too.  I tried my best to do everything that I could. Even when she was pinned under the car and everything, she wouldn’t let go of her pocketbook.  I told her that she could let go of it and I promise that she will get it back.  To think…  all I wanted was to go out and have my ice cream because I only have a few more days to enjoy food.  Look what I got myself into.  I did make a lot of “friends” though, as I was well taken care of by the cops.  I am just so glad that I was there to help. I am just still freakin out to be honest with you because of those visions and feelings that I get.  I can’t believe that every time I get one… 99% of the time they come true.

I can’t believe how close it is getting.  It is going to be here in no time. Three more days and I am out of here.  Sunday is the big day that my dad and I leave for California.  I am so very nervous. I am not only nervous about going, but nervous that I am not going to make it to California too even though it is only a few days away.  I desperately need to get to California because I am going for lots of surgeries. I am rapidly deteriorating and I don’t have much time left.

So many things can happen in 3 days that can prohibit me from going to California.  I am really hoping that I am going to make it.  But, we will see.  The doctors are hoping that I will make it as well because I am so very sick, so everyone has their fingers crossed. With everything happening lately, I should really be in the hospital as we speak.  However, the hospital here is not really situated to take care of me or able to really “help” me.  The BEST place for me is California and therefore, we are hoping that I will just make it there.  If I would go to the hospital here in New York, I would never make it to California, and California is the place where my “team” is located and where the doctors are most knowledgeable about what is going on with me.  I am not going to admit that they are 100% knowledgeable and will definitely be able to help me, but they are doing stuff there that they are not doing anywhere else. For example, they have treatment of snail venom for my neurological disease and autonomic disease that they pioneered and cannot be found anywhere else.

California is also the best place for my gastroparesis.  Only 8 hospitals in the United States are really situated for a small bowel transplant, and it is even less for a “multi-organ visceral transplant.” Stanford Medical Center, which is the hospital that I go to, is one of those hospitals that specialize in those transplants that I need, as I need a new stomach, small intestine, large intestine, and pancreas.  I also recently found out that a new esophagus might be needed, which really complicates things.  This is a very dangerous, risky, radical transplant and it runs the highest risk of rejection of all transplants.  You really have to have the BEST doctors in the field in order to undergo a transplant like this and therefore, California is where all the BEST doctors have culminated.

Doctors from all over the country, from top hospitals, have traveled and relocated to Stanford Hospital and therefore, it is where I can receive top-notch treatment.  I really need to be there because I can get treatment that I don’t receive no place else since all the top-notch doctors are there.  Not only are they extremely knowledgeable, but their bedside manners are unmatchable.  They really have a “team” approach and work together.  It is amazing how much they work together and try to “help” the patient.  They are in it for the patient, unlike the doctors who are only in it for themselves. I have never seen anything like it before.  The only thing that stinks is that they are located across the country.

Anyway, I am just hoping to get to California because like I said before, so much has been happening.  First of all, I have really been bleeding.  We don’t know where the blood is coming from, but we know that I am bleeding from somewhere because I have had blood in my stool.  I have had blood in my stool for a while, but it is getting a lot worse.  The doctors in the past in other hospitals besides California have tried to figure out where the bleeding was coming from and the cause, but they have unable to do so.  They have wanted to do a colonoscopy to see what was occurring in the intestines, but even that was a fruitless attempt because I was unable to prepare for it.

In order to have a colonoscopy, you have to prepare for it and be basically completely “cleaned out” by using laxatives.  People generally take pills or drink a gallon of a mixture called GO LITELY. However, since I suffer from severe gastroparesis and unable to swallow anything, the doctors placed a NG tube in me to help “prep” me for the procedure.  Since my GI tract is completely “dead” and nothing really passes through, the doctor placed a tube in me that went directly into my stomach to help put the mixture in me so that I wouldn’t have to swallow it.  However, when the doctors put the mixture into the tube, they only had to remove the tube because it failed.  They were only able to put in less than a quarter of a liter because the tube started to back up.  My GI tract is too bad and my stomach is too “dead” that nothing was passing through whatsoever.  Therefore, the tube was completely backing up and the mixture (Go Litely) was coming back out the side that they were putting into the tube.  So, since they couldn’t put any of the mixture into the tube anymore because it was “backing up,” the doctors had no other choice but to remove the tube.  It was a failed attempt to prep for the colonoscopy and therefore, the colonoscopy could not be performed.  Even with the amount that was given to me in the tube, it still should have made me go to the bathroom, even if it is was a little bit.  However, my GI tract is too bad that I didn’t go at all.

So, the doctors were unable to do the colonoscopy to find out where the bleeding was located.  The doctors have also tried in the past to put a camera in me by having me “swallow” the camera.  It came in a pill form, but that too was a failed attempt. Nothing passes through my stomach and therefore, I only threw up the camera a few hours afterwards.  I literally throw up everything because nothing passes through my stomach.  I can literally take pills in the morning and then when I throw up over 12 hours later, I can vomit up my pills and bring them to my dad in a cup.  They are all whole and not dissolved.  You would think especially after that much time that they would be dissolved or something, but they aren’t.  Even with the pills that do dissolve, they don’t even dissolve in the place that they are supposed to, which is in the stomach.  They end up dissolving in the esophagus and therefore, the doctors have to be extremely careful when giving me medications because it can easily ulcerate my esophagus since they dissolve there instead. There have been so many times that I have needed emergency endoscopies to remove pills because they became stuck in my esophagus and were causing problems.  After all, we can’t afford for my esophagus to ulcerate.

Therefore, when I go to California, not only will I be having other surgeries, but one of the surgeries that I will be having will be surgically placing the camera into my small intestines.  This way they will find out exactly what is going on because I am bleeding worse than ever.   They can’t find out what is happening any other way, so this way it will bypass my stomach and they can be assured that it will be put in the place that they need it to be. 

I really have been bleeding a lot more than usual.  So, the doctors are really getting worried.  We have no idea where it is coming from.  So, hopefully I will make it to California and they will be able to find out where it is coming from.  I have been so very thirsty as well lately.  We know I don’t absorb because of the severe gastroparesis, but we are thinking that the bleeding is possibly making things worse. From the severe gastroparesis and malabsorption, I really am dehydrated.  So, I really can’t afford to lose even more hydration because of the bleeding.  Things just keep getting worse and worse.

Speaking about bleeding, it also turns out that I have bleeding in my ears.  We don’t know why there is bleeding in my ears, but I now have bleeding in my right ear.  I went to my internist today and he confirmed that there was indeed blood in there, especially in the ear canal.  There was also a lot of congestion as well.  We don’t know what to make of this, but this is not good.  Not only in general is it not a good thing that I am bleeding, but it can really complicate things with going to California as you aren’t supposed to fly with ear problems and it isn’t a “short” flight either.  The flight to California will be easily 8 hours long and it will be up and down because we have stopovers.  So, it is really going to be a problem.

The doctors are really worried about the bleeding in my ear and congestion not just because they don’t know why there is the bleeding, but because of the “flying” to California.  They have me seeing an ENT doctor tomorrow because something has to be done because it can cause a great big problem if it is not taken care of.  It cannot only cause further problems if not treated, but it can cause a lot of pain on the plane.  I am in so much pain as it is when I am on the plane that they have to literally overmedicate me and knock me out in order to get me there, I don’t need something else occurring.  So…. we will see what will happen tomorrow when we go to the ENT doc tomorrow.  All I know is that he better have some “magic” up his sleeve because I leave in such a short amount of time.  I need a quick “fix!”

I also have recently gone to the cardiologist and had an echo because my heart isn’t doing too well.  I am still awaiting the results, but I should have them back tomorrow.  I am really having heart problems and trouble breathing lately.  My organs are failing, my heart is having trouble beating, I am having trouble breathing, and the doctors are afraid that I am going to have a life-threatening fracture on my spine because of the Gastroparesis.  Due to the Gastroparesis, I am getting so much gas/air buildup in me.  There is so much in me that it is putting huge amount of pressure on all my organs, spine, and diaphragm.  As a result, it is causing organ failure and difficulty breathing.  In addition, my bones are paper-thin and I already suffer from dextroscoliosis.  They are so worried that pressure from the gas/air will collapse the vertebral bodies of the spine because of how weak they are.  I really need someone to “pop” me.  It is so dangerous because it is twisting my colon too and once that twists, I am in HUGE trouble because I can easily die. I need to have a rectal tube inserted to remove the pressure and air, but that is only a temporary fix. It will be back in no time.  So, something really needs to be done and done quickly because of the gastroparesis. 

So, tomorrow will be a big day because I will not only be seeing the doctor for my ear, but I will be talking to the cardiologist and getting back the results to my heart.  I really hope that I get good results because as of the last ECHO, my heart was really in distress.  I was suffering from pericardial effusion, ascites (is an accumulation of fluid in the peritoneal cavity), and other stuff.  Never a dull moment. 

I am really deteriorating and I am seriously going to die soon if something isn’t done fast.  The doctors already said that if I was a “male,” would sure have been dead already.  He said that a male would never be able to live at the BMI level that I am, as males can’t live below 13 under any circumstances.  Females can live for a little longer, as they can live til 12.  I am at a level of 12.2, so I am borderline death.  So… I really need something to be done and done quickly.  Plus, I am really starting to show all the “effects” that my illness has been doing to me all these years.

I have really been fortunate (f you want to call it that) because I was able to conceal being sick for a long time.  Even though I was suffering with this life-threatening disease, I never really “showed” it and people never really knew that I was suffering with this condition.  People just thought that I was extremely thin because I always had a good attitude and I never showed it.  I was always able to conceal everything that was happening.  However, the diseases have gotten so badly that I can no longer do that. People even comment on a daily basis of how “bad” I look and how “worried” they are of me.  I am in so much pain and I am getting symptoms that I never got before.

I was always able to conceal all that was happening to me.  However, the pain and suffering lately has gone way out of control.  I am getting too many new pains and I can’t tolerate it anymore. I can barely even get off the couch nowadays.  Even though I was so sick before, I did try to be as “active” as possible.  However, it has gotten to the point that I can’t even move.  It is complete agony no matter what I do.  Even getting up and down off the couch is too much for me to bear.  My legs feel like they can’t even support me and I keep getting very dizzy and such.  You know when you over exercise and your muscles are all shaky from being overused? That is how I feel.  

The doctors say that even though I was able to conceal all that was happening in the past and even though I was so “sick” for so long and my body was able to handle it for such a long time, it doesn’t mean that my body wasn’t suffering in the inside it wasn’t physically suffering in the inside either with damage.  My body has been undergoing all this physical damage all throughout the years even though I have been able to conceal it and such.  So, it is at the point where this “damage” can’t be concealed anymore. My body just can’t do it anymore.  I need desperate help or else I am going to die.  My body just can’t do it anymore. 

So, it is imperative that something be done and done fast.  I have had countless procedures and surgeries, but nothing has worked.  We have even exhausted all the medications out there and even tried medication that I get out-of-the country because it is not FDA approved, but nothing still has worked to help me get better.  I am just getting worse and worse.  It is at the point that not only do I have the neurological disease and autonomic dysfunction that is spreading like a wildflower and affecting everything throughout my body because it affects everything and anything on the nervous system, but I am suffering from severe gastroparesis.  I suffer from severe paralysis of the stomach, small intestine, and large intestine.  They are essentially “dead,” as there are no contractions of them whatsoever.  The sphincters of them are literally wide open and it looks like I was given Botox. Yet, nothing can pass through because there are no contractions because the organs are so “paralyzed” and “dead.”  My esophagus is even giving problems, as it is giving me severe swallowing difficulties.  I can no longer really swallow and it is having dysphagia as well.  As a result, it has led to aspirations into my lungs and has caused other severe life threatening problems like organ failure too.  I am also life-threatening thin and malnourished because I can’t absorb, as I barely weigh 70 pounds.

Although I am awaiting a transplant, we are trying to “buy” time because I am definitely running out of time.  So many people die waiting for a transplant because of the time that they have to spend “waiting” for a transplant. As of now, I really don’t have time to do this “waiting.”  In addition, the transplant is extremely risky and dangerous.  It runs the highest rejection of all transplants.  Since I am so low in weight and malnourished, I am not even the strongest person to undergo surgery.  I really need to gain some weight so that I can be stronger.  I really need to regain some of my strength, especially if I am to undergo a huge transplant like this.  I am going to need all the strength that I have if I am going to survive the transplant because the survival rate of this transplant is not good. 

With just small intestine transplant, the survival rate after 5 years is 60%. I need a whole system, so the survival rate is less.  Even with just the transplant alone, there is not one transplant that happens that doesn’t come with complications.  Everyone that has this transplant undergoes complications.  So, I need to be strong enough so that I can overcome it.  After all, 20% end up with major complications and may not even survive the surgery.  I don’t want to be one of those statistics.

In a way to make me stronger for the transplant and in a way to “buy” me time because if something isn’t done, I am going to end up dying, I am headed to California so that I can have multiple surgeries next week. They are going to be putting in tubes in me that will bypass my entire GI system and go into the small intestine directly.  They know that the small intestine is “dead” as well, but they are hoping that if they go low enough into the small intestine, there just might be a viable part.  So, the tube will bypass the esophagus, stomach, and upper portion of the intestines and enter directly into the lower portion of the small intestine.  This surgery will take place on Monday. 

If the surgery is successful and the tubes can be tolerated, I will then have a second surgery on Thursday to make the tubes more permanent and have them coming out of abdomen. The doctors don’t want to make the tubes completely permanent because they don’t know if the tubes are going to work or if I am going to be able to tolerate it.  I have less than a 20% chance of this happening.  Due to my neurological and autonomic dysfunction, I have trouble having anything “foreign” in my body.  Even when I have IV in me, it doesn’t come without extreme pain.  They can’t usually give me IV fluid without knocking me out because I am so extremely hypersensitive.  I am in so much pain because I am so hypersensitive and they are fearful that I will be in so much pain from the tubes because of the sensitivity too.  In addition, usually anything “foreign” stirs up the autonomic dysfunction as well. If that occurs, I have difficulty breathing, I become in more pain, I get extremely hot and cannot sweat because of the autonomic dysfunction, etc.  It is simply horrible.

I am in so much pain as it is and I can’t tolerate any more pain. The amount of pain that I am in is astronomical as it is.  Doctors say that if “Hell was a medical condition, it would be known as my disease.”  My neurological disease is ranked as the most painful thing that can occur.  It is more painful than exist.  RSD ranks #1 on the McGill Pain Scale, which means it is the most painful disease that exists.  As you can see on the scale, Arthritis pain is ranked about a 18, Cancer pain is 24, Chronic Back Pain a 26, and then my illness is ranked a whopping 42! The only thing close to RSD pain is the amputation of a finger and that is quick.  My disease is constant, as I don’t get a break from it. I suffer with it 24 hours a day, 7 days a week.  So, I can’t afford for it to be made worse or for it to be exacerbated. In addition, any traumatic event or exacerbation can cause it to “spread.”  It is already spreading like a wildflower and therefore, I can’t afford for it to spread even more.  Basically we are playing with fire.  So, if it means starting this illness of even more and exacerbating it, the doctors will have to remove the tubes as well.

The tubes will also have to be removed if they fail to work because the intestines are too “dead.”  They are hoping to find a small piece in the lower intestine, but they are not even sure that will be possible.  Since I have no contractions, it is very possible that even though they are going into the lower intestine, whatever enters the intestine at that portion will still collect there and form a “bag” there.  In the upper portion of the intestine, the food had no place to go and therefore, it always collected there with no place to go.  It formed a “bag” there and abdomen would become extremely distended. I would even look pregnant.  So, if this would occur even with the tubes, it will have to be removed as well.

If the tubes do work, I will never be able to eat again.  That is one thing that is really bothering me.  To think about never eating again and only being 30 years old, it really bothers me.  I mean… eating is such a social issue that people love to do.  So many people go out to eat with friends and family to talk and such.  But, I know I wouldn’t feel comfortable sitting around and just “watching” other people eat and I am sure that other people wouldn’t feel comfortable either having me “watch” them either.  In addition, I would constantly feel hungry despite being fed minimally through the tube.  Even though I would be “fed” through the tube, I won’t feel full because being “full” entails feeling food in your stomach and in your mouth so it registers in your brain.  Since I won’t have this anymore, I will always be hungry and my stomach will always be rumbling.  I don’t know how I am going to manage.

So, I have been trying to enjoy as much food as I can in the last couple of days before surgery.  I already told my mom that Saturday night, which is the night before I leave for California, all I want for dinner is mounds and mounds of ice cream.  I love my ice cream and I am surely going to miss it.

So, I have been spending my last few days trying to enjoy whatever food I want to have before I can’t have it anymore.  I love pumpkin, so I went to Dunkin Donuts yesterday and had a whole “pumpkin” fix.  I really went PUMPKIN overboard at Dunkin Donuts… pumpkin muffin, pumpkin cream cheese, and pumpkin coffee to wash it down. Would have gotten a pumpkin donut too if they had that, but I had to settle on an Apple Orchard donut.  However, when I got home, I realized they messed up on the cream cheese.  They ended up giving me Jalapeno cream cheese instead.  So, I was kinda annoyed.  But… Dunkin Donuts definitely has the BEST pumpkin muffins in the world.

Well, I am headed to California on Sunday. I will be undergoing the surgeries for the tubes, the surgery for the camera to be put into my small intestine and hopefully be given the snail venom, which they pioneered.  Although they would really like to put the snail venom in a pump, I am too small for one, as there is no room for one in my body.  They thought about putting it in my toosh, but there isn’t even enough room and padding there.  So, they are just going to put it in my spine (the venom), and then when I gain weight and room is made, I will have the pump implanted. 

I really hope that I can make it to California.  I just gotta hang in there 3 more days.  But, I am sure that since I don’t want it to come, it will come in a blink of an eye because whenever you don’t want something to come, it comes so quickly.  Isn’t it amazing how that happens.  It is only the stuff that you want to come so quickly that doesn’t.  However,  I do find it awesome that I am going to be in the same state as the EMMY awards this year. Even though I of course won’t be in Los Angeles, I think it is still awesome that I will be in California when they are being televised.

I am still having problems with the insurance company in regards to covering me with the transplant in California.  They will only cover me if I have it in Nebraska or Indiana, and both places aren’t really the best places to have it.  If I have it in Nebraska, they don’t do multi-organ transplants.  They only do small bowel transplants.  Indiana only started doing multi-organ visceral transplants since January, so they only did 1 or 2 since.  This is such a risky operation that I don’t want to be the guinea pig for this operation.  I really need to be in California because they did this operation before and my entire team is there.  Like I said before, they are the only place also that is equipped to handle my neurological disease as well.  So, I really need to go there.

We have made an appeal to the insurance company, but I doubt they will allow me to have it in California.  I did speak to the transplant nurse from the insurance company today because I got the approval for Nebraska and such, but when I explained my case to her saying how detrimental it is that I have it in California and how I can’t have it in Nebraska and Indiana, she said that I have a very valid case and that I really do in fact need to have it in California.  However, she is just a “nurse,” so essentially… she has no say.  She told me that unfortunately my insurance company will only approve 2 centers.  I don’t know what is going to happen.

Even worse case scenario and I end up being the guinea pig, I still need plenty of money in order to have this operation.  Even with the insurance covering it, I still have plenty of money that I need to fundraise because the insurance is not going to pay for everything.  They will pay for the multi million-dollar operation, but I will still have a deductible.  I will have to still pay for the living expenses because I will have to remain out there for 3-4 months afterwards, traveling expenses, appointments, medications, etc. 

We desperately need help because the anti-rejection meds that are required to take after the transplant that are needed in order to survive are not even covered by the insurance and will easily cost me $1000 per month alone.  That is not even including all the other medications that I will need that are not covered by the insurance or the copayments that we still pay.  After all, our copayments alone for the year (and that is with insurance paying) usually total up to over $25,000.  Also, I won’t be able to fly to the transplant center commercially when it is time for the transplant.  They won’t accept that at all.  I will need to fly PRIVATELY and therefore, it will be additional money.  The cost of a private plane is like $20,000.  I don’t know how we are ever going to afford this.

So…. even if the insurance should cover the actual operation, there are just so many other costs that I will still have to pay.  So… even if the insurance does cover the actual operation, I will still need over at least $100,000 in order to have the operation.  I don’t know how on earth we are going to pay for this, especially when there aren’t a lot of donations coming in.  Don’t get me wrong… I am extremely grateful for all the donations that I did receive, but they are not nearly enough to what I need.  I really need so much more because the amount that I have already made is like “peanuts!” 

I have tried so much to find different ways of fundraising, but nothing works.  If anything, it will work initially and then quickly die out.  I have tried websites, writing to the media, flyers, etc.  Yet, they really haven’t produced much.  I really wish I could get on the news or in the media because the media is so powerful.  I don’t understand how other people get on the news and TV talk shows and such and then I can’t.  I guess it is like it always goes… “It is not what you know, it is who you know.” 

Well… Gonna go and rest. Had a really big day today and need to rest.  Like always, please say a prayer for me.  I really need all the “help” that I can get.  If you can, please spread the word of my site so hopefully there can be more awareness of my condition and I can receive further help.

Love always,

Fallon

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September 18, 2012

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Hey-

What is going on?  Just felt like I would update since I haven’t written in awhile and I am leaving in a few days for California.

O my goodness. I have to make a decision where to have the transplant.  I really don’t know what to do.  It turns out that I really need a transplant and I am really deteriorating rapidly.  I really would love to have the transplant performed in California because that is where I have been going, and I feel so comfortable there.  I love the hospital, the doctors, the nurses, etc.  It is the best place that I have ever gone to.  The doctors are not only knowledgeable, but they have terrific bedside manners. They even have a whole “team” approach and they all talk to each other.  Never before have I seen something like that.  Believe me… I have seen my slew of doctors and no other hospital or doctors are as good as the ones that are in California.

In addition, I also need a multi-organ visceral transplant, which is very rare, radical, and dangerous.  Only about 8 hospitals in the country perform small bowel transplants and the amount that do “multi organ” is even less.  I need a small intestine, large intestine, stomach, and pancreas.  The other hospitals just do transplant of the small intestine even though they will remove most of the stomach.  However, this wouldn’t even be good for me because my entire stomach is completely “paralyzed” and “gone.”  So… whereas other people might be able to get by on just a small intestine transplant because that is where most of your nutrients are absorbed as well as removing most of the stomach and only leaving a small portion there, I can’t. 

My entire stomach is completely paralyzed, as my entire GI system is dead.  I have problems starting from my esophagus downward. My stomach is so bad that it even looks like I have had Botox in my stomach because it is completely wide open.  The sphincters are completely dilated, so food could pass through easily if my stomach did indeed work.  However, since my stomach is completely “gone,” I have no contractions whatsoever and therefore, I cannot push the food through.  Therefore, even if they leave a little bit of the stomach in me and just give me a small intestine, it really wouldn’t benefit me because I will still have that little bit of stomach still in me that doesn’t work. I need a completely NEW stomach.  Otherwise there is no point in getting the transplant because nothing will pass through and into the intestines.

Finally, I have underlying conditions as well.  I have the neurological disease and the autonomic dysfunction as well, which is spreading like a wildflower.  There is no known cure for these illnesses either, but when there are traumatic experiences are stressful events, the diseases become exacerbated and spread.  When I go for the transplant, you can bet your dollar that the disease is really going to be exacerbated and most likely spread because the stress of this type of surgery is probably enormous. 

So, I really need to be in a place that will be able to handle me.  The only place that really can handle this situation is California.  I have been all over the country for these illnesses and despite all the treatments that I have had such as sympathetic blocks, sympathectomy, medications, stimulators, etc., I have failed everything.  I have even been placed in radical ketamine comas, but the amount of ketamine that I require is far too great than is FDA approved.  The amount that I need can only be given outside the country and therefore, I am still awaiting for the approval of the IRB board to send me to Santo Domingo, which is where my doctor is setting up another center to do his experimental “studies.”  However, in the meantime, other means of treatments have to be sought and even though I have been undergoing comas in New York, they are not as intensive as the ones that I need.

Yet, there is a team in California that is situated to deal with these underlying conditions.  They have treatments that they pioneered that could help me in my disease should there be a flare up, which there most likely will be.  They have the snail venom as well as the ketamine coma.  The ketamine coma that they will even give me there is more intensive than the one that I am receiving here, but of course it is definitely not as intensive as the one I need out of the country.

However, like always… there are always problems.  I don’t think that I can ever do anything without there being MASSIVE problems.  It turns out that my insurance company will not pay for the transplant in California, but only will pay for it in 2 other hospitals.  They will only pay for it in California if the other 2 hospitals “deny” me.  The other 2 hospitals are in Nebraska and Indiana. However, what hospital is going to reject me knowing that if they “cure” me or something, they can really have it “made?”  I mean… I don’t really mean to put myself on a pedestal, but whoever “helps” me can really get a whole slew of publicity and wealth from me because I am suffering from a very rare and extreme disease and going for a very radical and risky procedure.  You know?  So, what doctor is going to give me up so easily?

I really need to have the transplant in Cali because my whole team is there as well as because they do the multi-organ visceral transplant that I need.  The hospital in Nebraska only does the small bowel transplant, which really won’t help me.  Indiana does do the whole multi-visceral transplant, but they only started doing them this past January. However, I now come to a problem because I don’t know if I should just go to a hospital like Indiana that just started doing this kind of operation in January or go to Nebraska and be the first one, or should I really fight and hope that I get ability to go to California and have the operation there. I know that this operation is very rare and that hospitals only do about 1-3 a year in general, but I don’t really know if I want to go to a hospital that only started doing them this year or be the first one in that matter.  In the meantime, we are appealing the decision to be able to go to California.

However, I might be forced to only go to Nebraska or Indiana if I don’t win the appeal.  Nebraska called me today and said that even though they don’t do “multi-organ visceral transplants,” the doctors had a meeting and are willing to do it on me.  Therefore, I would be essentially the FIRST one to have it performed on.  Do I really want that to happen?  I don’t know how much I want to be the first one to have a rare, radical and risky surgery like that because there are so many complications that can arise and they won’t necessarily know what to do in order to overcome it.  California even said to me when I saw them that “Not one transplant is performed without a complication.”  In fact 20% end up having a major complication and really need to go back to the OR.

I am sure that Nebraska is a very good hospital, but do I really want to be the “first” one to have this performed.  It is the hospital though that is considered to be the “largest” small bowel transplant center.  it is also the first hospital to have performed it in the United States.  So, in comparison to all the other hospitals, they have done the MOST small bowel transplants and have done it the longest. But, like I said before… that is for only small bowel. Also, the success rate of people living after 5 years is only 60%.  It isn’t even that great.  So, if it is that low with just small intestine, I wonder how much the survival rate will be for me with a surgery that has never been done before.  You know?

I need more organs than that, so it is a much different, a much more radical, risky, and dangerous operation.  So… is it really the same?  I really don’t know what to do. I also know that it matters where you list for the transplant (such as what hospital) because it determines your placement and how quickly you will get an organ.  Each hospital places you differently on the list and has a different speed that they receive organs.  So, I don’t even know which hospital I would probably be better off listing at. All I know is that I am rapidly deteriorating and not going to make it much longer.  Even the doctors in both hospitals have said that I need to have this transplant done soon because I am not going to make it much longer.

I know I am getting worse because not only are the doctors telling me this, but I am feeling worse too. I can barely get off the couch nowadays. My body just wants to “give out” already.  It is like they my body is screaming out in mercy.  My legs can’t even support me anymore.  My legs have that “shaky” feeling that you get when you exercise too much.  The doctors say that even though I have made it this long, the damage that was occurring all these years inside of my body are finally being seen and can no longer be concealed.  I have also been bleeding, but it has been getting worse lately.  We don’t know where it is coming from, but hopefully we will find out when I go to Cali this week because they are doing a surgery to implant a camera. 

We also know that I am worse than usual because my cat won’t leave my side. She is even worse than usual because she walks by my side no matter where I go and cries that she wants me to be with her and hold her.  Whenever I am doing worse than usual, she is like my “babysitter.”  My parents know all the time when I am doing worse because Missy always tells them.  I love that cat.  I am definitely going to miss her when I go to California on Sunday and especially when I have to spend all that time away when I have the transplant.

However, if I do have Nebraska perform the operation, I do have to be evaluated by them as well.  I asked if I can have the records sent from the other hospital, but of course they want to do their own evaluation.  So, of course that will entail more money, more time away, and more time waiting… time I don’t necessarily have.   I wouldn’t be able to get to Nebraska til another 3 weeks or so, and then the evaluation will take another week in duration to do. I don’t know if I can last that long.  Plus, I don’t have the money to continue traveling and such.  This disease is such a financial burden and we are literally “broke!” We are literally having such a hard time finding the funds that we need to go to San Francisco on Sunday for the upcoming surgeries.

However, if push comes to shove and the insurance won’t cover me in California, I might have to just go to Nebraska.  However, even with the insurance covering it, I still have plenty of money that I need to fundraise because the insurance is not going to pay for everything.  They will pay for the multi million-dollar operation, but I will still have a deductible.  I will have to still pay for the living expenses because I will have to remain out there for 3-4 months afterwards, traveling expenses, appointments, medications, etc. 

We desperately need help because the anti-rejection meds that are required to take after the transplant that are needed in order to survive are not even covered by the insurance and will easily cost me $1000 per month alone.  That is not even including all the other medications that I will need that are not covered by the insurance or the copayments that we still pay.  After all, our copayments alone for the year (and that is with insurance paying) usually total up to over $25,000.  Also, I won’t be able to fly to the transplant center commercially when it is time for the transplant.  They won’t accept that at all.  I will need to fly PRIVATELY and therefore, it will be additional money.  The cost of a private plane is like $20,000.  I don’t know how we are ever going to afford this.

So…. even if the insurance should cover the actual operation, there are just so many other costs that I will still have to pay.  So… even if the insurance does cover the actual operation, I will still need over at least $100,000 in order to have the operation.  I don’t know how on earth we are going to pay for this, especially when there aren’t a lot of donations coming in.  Don’t get me wrong… I am extremely grateful for all the donations that I did receive, but they are not nearly enough to what I need.  I really need so much more because the amount that I have already made is like “peanuts!” 

I have tried so much to find different ways of fundraising, but nothing works.  If anything, it will work initially and then quickly die out.  I have tried websites, writing to the media, flyers, etc.  Yet, they really haven’t produced much.  I really wish I could get on the news or in the media because the media is so powerful.  I don’t understand how other people get on the news and TV talk shows and such and then I can’t.  I guess it is like it always goes… “It is not what you know, it is who you know.”

In the meantime though, Nebraska did send me a whole entire packet of different ways to fundraise. Of course I have done many of those ways already.  However, I really saw one way that I haven’t tried yet and I thought it would be very interesting to do.  Of course it would never work out because this is New York and not Nebraska, but I couldn’t get over it when I saw the fundraising idea.  They suggested having a PIG ROAST.  Can you imagine having one of those in New York?  I thought it was hysterical.

I was also told that until I have the transplant and such. I have to have my teeth examined like every 4-6 weeks and have the reports sent to the hospital.  They said that they want to make sure that I have to infections and such since the mouth is the prime area where infections lurk. 

So… I really need to start thinking about what to do.  I am just hoping honestly that things work out with California.  I am hoping that we win the appeal.  In the meantime though, I am supposed to be leaving on Sunday for San Francisco again.  I am so nervous.  To think… I just got back literally 2 weeks ago and here we go again… back to across the country.  I am supposed to be having lots of surgeries next week, as well as having snail venom put into me.  I really don’t want Sunday to come, but you know that whenever you don’t want something to come, it always come in a blink of an eye.

I am supposed to be leaving Sunday for California and then Monday is the surgery for the tubes. I am so nervous for it.  They will of course be putting me on full bypass during the operations because my body is too “weak” and such. They don’t think my body will be able to make it through the surgery otherwise.  They are hoping to be able to find a tiny piece of viable intestine to put the tube in.  The tube will bypass my esophagus, stomach, and most of my small intestine. The chance of this working is less than 15%, but they are trying this to “buy” me time because I am rapidly deteriorating.  I am just so scared that I won’t be able to come off the bypass machines because I am too weak and sick.  The doctors did express that as a huge risk.

I will then have another surgery on Wednesday to make the tubes even more permanent if I am able to tolerate the tubes and if the tubes work.  The tubes can easily exacerbate and stir up my autonomic dysfunction and neurological disease and if it does that, then they have to be removed.  In addition, the food has to be tolerated through there as well because my intestines are “dead” and there is no contractions.  Just because they put the tube in me, it doesn’t mean that the food will be able to move and pass.  They are hoping that by putting it low enough into the intestine and perhaps bypassing almost all the intestine, they might find a piece that is viable, but it is very unlikely.  It can be very possible that it can still form a “bag” there as it does in the upper part because there is no place for it to go.  If this happens, the tubes will also have to be removed.

I am not sure I am so thrilled about the tubes even though they will “buy” me time.  We don’t even know how much time it will “buy” me.  So, who even knows if it is at all even worth it. In addition, if I get the tubes, I will never eat again.  I hate to even fathom that idea.  Eating is such an activity that people take for granted. I don’t know what I will do if I can’t eat.  I will always be hungry.  Even though I will be fed minutely through the tube, I will still be hungry because it won’t ever be in my stomach or in my mouth.  People feel full because it goes in the stomach and it goes in the mouth because it registers in your brain.  therefore, my stomach will always be rumbling and have hunger pains.  I don’t know if I want to be bothered with that

But, I guess we will have to take one thing at a time.  I am also supposed to have snail venom for my underlying neurological disease and my autonomic dysfunction.  They have pioneered the treatment, and therefore, it is the only place where I can get it. Hopefully it will help.  Ideally, it should be placed in a pump.  However, I am way too small for a pump, as there is no place to put it.  They thought of putting the pump in my butt, but even there… there isn’t room.  So, they are going to just inject the stuff into my spine and hope it works just as well.  Then, when I gain weight, they will implant the pump.  I am hoping that the snail venom works because that is one thing that I haven’t tried and the autonomic dysfunction and neurological disease is spreading like a wildflower.

As I said before, I am also supposed to have another surgery to have the camera implanted in my small intestine.  I am bleeding and we have to find out what is going on. I have tried in the past to swallow the camera, but since my stomach is not working, nothing passes through. Last time I swallowed the camera, I ended up throwing it back up.  In fact, since nothing passes through, I can literally take my pills in the morning and then 12 hours later when I throw up, I can literally take my pills to my father in a cup because they come back up and are not dissolved.  Can you imagine?  It is over 12 hours and they are still whole and everything. 

The doctors have tried to do a colonoscopy on me, but even that was no good.  Since I am so badly paralyzed in my GI system and couldn’t swallow the laxatives and such, I had a NG tube put in me.  They only could put in less than a quarter of a liter and they had to remove the tube because it was literally backing up because of my poor GI tract. We couldn’t pour anymore of the stuff in because I was “full to capacity.”  So… there went that prep.  Even with the amount of prep that I took, it still should have done something.  However, it didn’t do anything.  So, they really couldn’t’ do a colonoscopy and see what was going on because I wasn’t “cleaned out.”  So… we still have no idea where the bleeding is coming from. 

I am really nervous about going to California not just because of me, but because of my dad.  I know that if something happens to me, my dad will never recover.  I wish he would talk to someone when I am there, but he won’t.  My dad is not handling this anymore very well.  He used to be “Mr. Cool” with everything and now… you can’t even talk to him.  He is yelling over everything.  There is like no talking to him about anything.  Social workers have said that he is in the “grieving process” already.  He is no longer able to keep it together.  It must be really hard on him to watch me like this because he wants me to get better so badly and no matter what he does, his hands are tied.

My dad would do whatever it takes to get me well.  He doesn’t want me to give up.  Even though I am suffering, he doesn’t want me to die.  He says that he is “selfish,” but he just doesn’t want anything happening to me.  I tell him all the time that I can’t do this anymore. I tell him that I am tired.  I tell him that I am tired of suffering in pain.  I tell him I am tired of suffering mentally, physically, emotionally, etc.  I just don’t have the strength anymore to continue to do this anymore.  Like the doctors have said, even though I have been like this for so long and not shown how “sick” I really was, it doesn’t mean that it wasn’t doing real physical damage to me on the inside.  My heart has a lot of damage and so does my organs.  I can’t hide it anymore and either can my organs.  I just can’t do it anymore.  Yet, my dad doesn’t want anything to happen to me.

My dad always tells me that he is going to “freeze” me.  That is how serious he is about not wanting anything to happen to me.  I see how much I mean to him and that is why I continue to push on.  I am so afraid of everything, but I am most afraid of leaving him because I know he wont’ be able to handle it.

So… California is right around the corner.  I just hope that my dad finds the way to the hospital and back to the hotel.  Even though we have been there a countless amount of times, he still doesn’t know the way to go.  I am sure that he does know the right way, but he doesn’t trust himself.  I am usually his co-pilot because we use my GPS on my iPhone.  However, the phone is going to be of course with me, so he is going to be out-of-luck with that.  So… he is planning on bringing his own GPS unit.

My mom isn’t going to California with us.  So, I am planning on doing a lot of FACETIME with her.  Thank goodness for technology.  I really am going to miss her.  I really wish she would be there this time, especially since I am having all these dangerous surgeries.  But, I know that I am in good hands with dad.  I just have to show her how to “Face Time!”  She just got the new iPhone, so she has no excuse that she can’t.

It is getting so close to California, but there is still so much to do. I still have to go have my bloods taken, pre-surgical clearance, and today I have the cardiologist. I have to go for an echo.  I wonder what news I am going to have this time.

Well, it is that time that the Fall shows are coming back.  I just saw the most amazing show.  I just saw REVOLUTION, and I love it.  I definitely recommend it.  It is about the world stopping electricity.  The world is suddenly thrust back into the dark ages. Planes fall from the sky, hospitals shut down, and communication is impossible. And without any modern technology, who can tell us why? Now, 15 years later, life is back to what it once was long before the industrial revolution: families living in quiet cul-de-sacs, and when the sun goes down lanterns and candles are lit. Life is slower and sweeter. Or is it? On the fringes of small farming communities, danger lurks. And a young woman’s life is dramatically changed when a local militia arrives and kills her father, who mysteriously – and unbeknownst to her – had something to do with the blackout. This brutal encounter sets her and two unlikely companions off on a daring coming-of-age journey to find answers about the past in the hopes of reclaiming the future.

Well… I guess that is about it.  I am also trying to read a book called TIME KEEPER by Mitch Albom.  I am waiting for next week to get the new book that J.K. Rowling wrote. I was such a HARRY POTTER fan, so I am really hoping that this book will be great as well. 

There are some movies that  I want to see, but I am saving them for California. At least it will give me something to watch on the plane.  I really want to see SNOW WHITE AND THE HUNTSMAN, ARBITRAGE, and SAFE.  After all, the plane ride is like 8 hours and there is nothing else to do.  Dad is already dreading the ride.  I usually get knocked out because the doctors “overmedicate” me, but dad has no other choice but to “stare” at the seat in front of him.  Whenever we get to California, dad always complains about how long the trip is.  However, for me… it goes by so quickly because I am knocked out.  My dad never hears a peep from me.  My dad loves the iPad because at least that keeps him busy.  So… I will download the movies onto the iPad so that we will have something to watch just in case I am up.  If nothing else, I will have something to watch when I am in the hospital. 

Well… gotta keep pushing onward. Hoping that tomorrow will be a better day.  I really gotta hang in there because California is just around the corner and I have to be strong for the surgeries. With everything happening, please say a prayer for me. 

Sincerely,

Fallon

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September 13, 2012

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I can’t believe the news that I was just given. Things just continue to get worse and worse.  It is like I just keep hearing brick walls and I am continuing to deteriorate. Time is of the essence and I am rapidly deteriorating.  I don’t have time for all this BULLSHIT that is happening now. I mean really… why does life have to revolve around money so much?  It is such a shame because since it does… my life is so much at stake.  It turns out that unless I raise over $100,000, I am literally screwed.  There is so much that I need to tell you that it isn’t even funny.  I don’t know whether to cry or not, I am so numb as of right now to everything that is happening because things are just horrible. 

I am doing horrible and time is counting down til I leave for California.  I am supposed to leave for California in a little over a week.  I am scheduled to leave September 23rd, but who knows honestly if I am going to make it that long.  Dad, the doctors, and me are hoping that it will happen, but I guess we won’t know for certain until I actually touchdown in San Francisco on that Sunday.  As of right now… things are just so touch and go.

I am not doing well at all.  First of all, I have bleeding going on someplace in my digestive tract.  We knew for a while that there was bleeding going on, but we couldn’t find out where it was located.  We have tried various ways to determine the location, but they have not been able to do so.  We have even tried colonoscopies, but they were not really successful, mainly because we weren’t really able to prepare for it because of my failed GI system.  I have such a paralyzed stomach that even with a NG tube that bypasses everything and goes directly into the stomach, we weren’t able to “clean” me out.  We poured in the laxative “Go Litely,” which would make anyone have the runs. However, due to my paralyzed stomach, we only got less than a quarter of a liter into the NG tube because the tube started to back up and the liquid came back out of the tube.  As a result, we had to end up pulling out the tube.  It was a failed attempt to “prepare” for the procedure and nothing even happened with the amount given even though it should still have had an effect. However, they tried to do the colonoscopy the best that they could, but they still couldn’t determine where the bleeding was coming from.

Despite the colonoscopy and endoscopies and other exams, they couldn’t locate the bleeding. Yet, they knew that there was bleeding because there was blood in my stool.  It was not as bad as it is now, so even though they were concerned, it was not a great emergency because the amount wasn’t too great.  Yet, it is at the point now where the bleeding is really significant.  I am literally pouring black stuff out of my toosh.  It is like liquid coming out and it is purely black.  I am also getting the worst stomach pains in the world and then I get this pure liquid that comes out that is black.  So… we definitely know something is going on. 

In addition, I can barely go to the bathroom to have a #2 (bowel) movement, if at all. Not to sound disgusting or anything, but it feels like I have a “hole” in my intestine and I just can’t go to the bathroom.  I don’t know what is up with that.  All I keep doing is producing “mucous” or something that looks like “chicken fat,” if anything at all.  It is like my intestines are not “toned” enough to push anything out and yet, it keeps blowing up and filling up with gas. My GI system is completely a HUGE mess. 

I have also received my bloods and they are not doing well either.  My bloods are significantly dropping and I am really at risk for dropping dead from cardiac arrest.  In addition, my bloods are so bad that it is causing my heart to beat irregularly.  This isn’t good at all, especially since I have all that gas/air that is filling up in my because of my failed GI system.  I am literally so filled up with gas/air and it is seriously getting worse. It is putting so much pressure on my organs that it is causing organ failure and causing the intestines to twist. It is causing me to have trouble breathing and it is causing my heart to have trouble beating as well because of the pressure put on the diaphragm as well.  It is a real mess.  So… to have this pressure giving my trouble with having my heart beating in addition to my bloods causing my heart to beat irregularly… I am in serious jeopardy of having a heart attack or something serious happen. 

In addition, the gas/air is putting severe pressure on my spine as well.  My bones are paper-thin and I am already suffering from “Dextroscoliosis.”  The doctors are so worried that between the pressure exerted from the gas and from the poor bone structure that I have, as my bones are paper-thin and the doctors say I am a fracture just waiting to happen, they are afraid that my spine is going to break in half.  They are afraid that the vertebral bodies of the spine are going to be compressed.  If something like that happens, I can easily become paralyzed. 

So… as you can see… things are really getting worse.  My bloods are getting really bad, I am bleeding more than before, I am weaker than before, I am collapsing, etc.  I desperately need to get to California as soon as possible because they are the only ones that can basically help me.  The doctors really would like for me to be in the hospital now because I need URGENT and immediate care, but they all know that going to the hospital here would kinda be pointless because they wouldn’t know how to deal with me and how to treat me. I desperately need to get to California, so hopefully I will be able to make it there on Sunday. 

As of right now, I am scheduled to go to California for surgery on Sunday.  I will be having multiple procedures during this time.  I am having surgery to put a tube in me because they really need to try to “buy” some time since I am rapidly deteriorating.  I am literally at a level that is borderline death.  I was told that if I was a male, I would definitely not be alive right now.  Luckily, I am a female and therefore, I can live at a lower level.  However, females can only live til a level of a BMI of 12 at the lowest and mine is like 12.2.  So… time is of the essence. 

The doctors are going to put the tube into the lower portion of the small intestines even though they know that the entire GI system (stomach, intestines, etc.) is dead.  However, they are hoping that perhaps they can find a little bit that might be “functional.”  They know that the upper part is completely gone, but they are hoping that maybe there might be a small and tiny piece at the bottom that might be “alive” still and can be worked with.  So, the tube will bypass the esophagus, stomach, and most of the small intestine.  If successful, I will undergo another operation to further surgically implant the tube so that it will become more permanent and it will be coming out of abdomen. 

 All these surgeries will be done under bypass because I am way too sick to do it any other way.  The doctors claim that I wouldn’t survive any other way.  It really scares me to know that I will be on complete “bypass” during this time, especially since there is a chance that they might not be able to get me off the “bypass” machines afterwards.

In addition, with the tube implanted, I will never eat again.  So, this can be the last week of eating for the rest of my life too because once I get the tube, I will never eat again. I really am not “thrilled” with that idea because that means that I am going to be “hungry” for the rest of my life because feeling “full” isn’t just about being “fed.”  You feel “full” and “satisfied” because it enters your stomach and your mouth, so it registers in your brain.  However, since it won’t be doing that for me, I will be always hungry.  My stomach will always be rumbling even though I will be getting “fed” a bit through the tube.  It will be torture. 

I also don’t like the idea of not eating because I am going to feel “funny” being around people and always watching them eat.  I am going to be even more hungry seeing them eat and knowing that I can’t.  Plus… I am sure that other people will feel funny too eating and having me watch them too.  It won’t be a great situation for anybody.  Even though it might “buy” my time, it really might be more torture than anything else. Plus, who even knows how much “time” this tube will buy me.  Who even knows if the tube will be worth it?

In addition, since I am bleeding and everything, the doctor wants to implant a camera surgically into my intestines.  I can’t swallow the camera because I will only vomit it back up.  That has happened already in the past where I swallowed the camera and then many hours after, I vomited the camera up because it can’t pass through my stomach since it is “dead” and nothing passes through.  So, they are planning to surgically implant it into my intestines.

I am also scheduled to have snail venom to for my neurological disease.  It has been pioneered in California and since it is the underlying cause for the gastroparesis and autonomic dysfunction and spreading like a wildflower, they are going to try the snail venom on me.  I have tried countless other treatments, but nothing has worked.  They also want to try to get me off some of the hardcore meds that I have been taking for the underlying neurological disease because it only compounds the severe gastroparesis.  Plus, if I get the transplant, they don’t want the new organs to suffer the same fate and therefore, they want to get me off the drugs that possibly can contribute to causing the gastroparesis as well.  So… since I have tried other modalities and nothing in the past has worked, it is really important to go to California because I am at the bottom of barrel with getting treatment for this illness and I desperately need something to help me with it.  California is the only place where I can get this treatment. 

However, I am having the hugest problem now.  Who says that when it rains it doesn’t pour, right?  I am so upset that I am literally hysterical over the whole thing because I am so scared of what is happening now.  It doesn’t even feel realistic to what is going on.  It is like a nightmare.  I never thought this was going to happen. 

It turns out that the insurance will not grant me the ability to have the transplant in California. Can you believe it?  I am rapidly deteriorating, literally on borderline death, and I can’t get the transplant in California because the insurance won’t cover it.  This operation is over a million dollars and is extremely rare and risky.  It runs the highest rejection rate of all transplants.  I need a new stomach, small intestine, large intestine, and pancreas.  Only 8 hospitals in the country do this kind of surgery and not all hospitals even transplant all these organs. The type of transplant that I need is called a “multivisceral transplant.”  However, out of these 8 hospitals, very few hospitals do it, as most of these 8 only do “small bowel,” which includes only the small intestine. 

I got the phone call today from California that the insurance company will not pay for the transplant there.  They told me that the insurance company would only pay for it there in California if I was denied at the other places that it would pay for me to have it at, which were at Nebraska, Indiana, and Georgetown.  I can’t believe that they want me to travel to all these three places and get evaluated and denied before they will pay for me to have it performed in California.  Time is not on my side and I don’t have the time to travel to all these places.  Plus, I don’t have the money either.  You know how expensive it would be to go to all these places to be evaluated between airfare, hotel, etc.  Plus, my dad would have to take off so my unnecessary time from work and he can’t do that either. Traveling is not easy on me at all, as it really flares up my disease and makes it extremely worse.  How do they think that I am going to be able to travel to all these places and be evaluated?

California completely agrees that I don’t have time to travel to all these places and have the evaluation done there.  I don’t have time to travel and be “denied” so that the insurance will pay for the operation to take place in California.  Plus, I really need to have the operation done in California too because that is the only hospital that is situated to deal with my underlying neurological problem, which is definitely going to be a problem during the transplant.  Therefore, I will need someone (like California) to deal with it such as by giving me the snail venom or ketamine because it is really going to exacerbate the neurological problem.  It is spreading like a wildflower as it is, and it is going to really take off when I have this transplant. I am really going to need all the help I can get with it.  So… how am I supposed to go to a center that isn’t able to deal with this aspect?

My insurance company will only cover the transplant at 3 hospitals even though they cover me to be seen at all the hospitals like California and such.  Yet, you don’t know if you will be covered for the transplant or not until you go to through the “precertification” process, so it isn’t like I knew prior to going. Anyway, the only 3 hospitals that they will approve me to have the transplant at are Nebraska, Indiana, and Georgetown.  I really can’t have it done there because not only do they not have the team to treat my underlying neurological disease, but after speaking to all of them, I don’t really feel as comfortable with them as I do with the doctors in California.  We aren’t talking about a transplant either that they do hundreds of a year.  This transplant is done only like 2-3 times a year in each hospital. It is really risky and runs the highest rejection rate.  Therefore, it is really important that I feel as comfortable as possible with the surgeons and hospital. You know?

In addition, when I called the other hospitals, I learned a few things.  I learned that Nebraska only does the “small bowel” transplant.  That means that they only will transplant the small intestine.  They said they would remove the large intestine and most of the stomach, but they will only transplant the “small intestine.”  However, my stomach is the worst out of everything and even if they leave a piece of it, there is no point in having any of the transplant because the complete stomach is “dead.”  So, there really isn’t a point having Nebraska doing the operation because I need a multivisceral transplant (stomach, small intestine, large intestine, pancreas) and they don’t do that. 

As for Indiana, they do the multivisceral transplant, but they only started doing it as of January this year.  So… they are fairly new with the transplant.   I know how rare this transplant is already, as hospitals only do 1-3 a year, but they have only been doing it there for this year.  So… it isn’t like they have so much experience.  Do I really want to undergo a BIG surgery like this with a hospital that isn’t so experienced?  I mean we aren’t talking about a minor or everyday surgery. 

So… I really am having HUGE problems with the transplant because time isn’t on my side and I desperately need to have it done ASAP.  However, I am being held up because I need to be “covered” as much as possible by the insurance because we are talking about over a million dollar surgery, and non way can I afford it by myself.  However, California even sees how I can’t travel to all these other hospitals to be first “denied” in order to be covered at California because I don’t have the time, ability in health to do so, funds to travel, etc.  They have been fighting with the insurance company like crazy, but haven’t gotten anywhere.  I am going to call tomorrow and see what I can do.  I don’t know what I am going to do if I should lose and be forced to go to all these other hospitals prior to getting the approval at Stanford.  I will never make it because I don’t have the energy, time, money, resources, or even health to do this anymore.  I am really scared.

To make matters worse, I even found out worse news.  I found out that I would need to raise over $100,000 because after I get this over million-dollar operation, I will need anti-rejection meds that will not be covered by my health insurance company.  This transplant and lung transplant are the riskiest transplants and run the highest chance of being rejected.  Therefore, whereas other transplants may be able to cut down on the amount of anti-rejection drugs later on in the future, I will always need to take the utmost amount because of the potential to reject the organs. However, I don’t know how on earth I am going to afford to continue to live despite getting this life-saving operation because it will cost me like $1000 a month just on anti-rejection meds.  Here are meds that I will need to take in order to survive after the transplant and yet, I won’t be able to take them because I can’t afford the $1000 a month for them.  That isn’t even including all the other expenses that I will need for my other medications.  That $1000 is just for the anti-rejection meds.  So… I don’t know what is going to happen. 

 I am really scared.  How on earth is this all going to work out?  I really don’t see a clear-cut answer to all these problems.  I am hitting brick walls everywhere.  I am such a burden to my entire family.  Sometimes I just wish that the “end” would just happen already because I am causing such a burden, especially a financial burden, on my family.  They have given up so much for me, and it definitely isn’t fair to them anymore.  My parents should be at a point in their lives where they should be enjoying themselves.  However, they don’t do anything because of me.  They don’t even go out to dinner because of me.  We haven’t even been on a vacation in over 10 years or did anything “fun” because of me and the expenses.  My father works himself ragged because of me (7 days a week from 3AM to 7PM) and he is no youngster.  He doesn’t even have a desk-job, but his work entails being physically active.  If something should happen to him because he is overly worked or has a heart attack because he works so much and isn’t so young, I would never forgive myself.  It just isn’t fair what I am putting my family through. 

 I am not going to pretend and say that everything is “peachy” and I want to always be alive.  Sometimes I wonder what life would be like if I wasn’t here.  When things are going this bad and when I am feeling this horrible, I can’t help but think that things wouldn’t be better if I wasn’t here.  My family would be able to enjoy themselves and they wouldn’t be burdened with the financial strain from me.  The house or business wouldn’t be in jeopardy either.  In addition, it would even be beneficial for me as well because I would be out of my suffering. I am tired of suffering.  I am tired of being sick. 

I honestly don’t know how much longer I can hang on. However, despite how much it might be better if I wasn’t here because I would be out of my “suffering,” I still continue and want to LIVE because I am not done here.  There is so much that I still haven’t done yet and so much that I still want to do.  I was robbed of so much from this disease and I really would like to still be able to do so much.  I have even made a BUCKET LIST, which I am hoping to complete.  Some of the important things on my list are to get married, have a family, go to Atlantis, etc. 

The pain and agony is relentless, but despite all this… I continue to push on.  I am so afraid of what is going to happen because I am getting so bad.  I never thought it was going to get this bad.  We never know anymore if I am even going to wake up in the morning because I am so very sick.  So… we are just crossing our fingers and toes that everything is going to work out.  I am so afraid of everything, but the thing that I am most afraid of is leaving my family.  That is the main reason why I continue to push on and not give up!!

I feel so bad for my parents.  They want me to get better so badly and yet, their hands are tied.  They keep saying that they “aren’t going to let me die.”  But, in reality, they aren’t in control.  I would like to believe that they had the magic to make me all better and what they said was true… but truth be told… they don’t.  They keep telling me that “everything is going to be ok” even though I know deep down that it isn’t.  I know that I am dying inside and my organs are shutting down.  I know that I don’t have long to go because of the way I am feeling.  It is a feeling that only someone who is experiencing “dying” can explain, but I know that it is happening.  Yet, they keep telling me that “everything is going to be ok” so that I don’t give up.  They keep telling me “how much I am needed here” and how they “won’t be able to do this and that without me.”  I know they are scared.  My dad is very affected by it, as there is no talking to him.  He is extremely “jumpy,” which is so unlike him.  Like I said before… I am scared for what is going to happen with this illness, but I am more scared of leaving my parents. 

I don’t want to die and leave them. They say that the hardest thing for parents is to bury their children.  I really hope and pray that it doesn’t come down to that!! However, I did make them letters telling them how much I love them and how appreciative I am of them in case something does happen to me.  I gave them the letters to hold onto because it has everything in them such as a lot of important information too.  But, I told them not to open it until that day should come, which will hopefully not be soon!!

I really need all the help that I can get because my family can no longer do this alone.  We have tried alone to pay for my treatments and such, but it is no longer possible.  I am so scared because I know that we can’t afford to keep me alive alone and how desperately I need the help of others if I am to survive.  It is now up to others in the world to help me live because like I said before… my life revolves around money and we can’t afford it on our own.  I have tried various ways of raising funds, but they haven’t been too successful.  If you can think of any ways or can do anything to help out, I would really appreciate it.  Even saying a simple prayer or spreading the word of my website would be a great help and much appreciative.  Like I said before, I don’t want to die and we really need the help of others in order for this not to happen!!

On a better note, I was really shocked today to see that I flowers came for me.  The doorbell rang and to my surprise there was a delivery of flowers for me.  I happened to order clothes awhile back on the phone and when I spoke to the salesperson, we had such a interesting conversation.  I told him about my story and he was also an amazing person.  Ever since then, I have gotten surprises from him expressing his “thanks” for our conversation.  He had made me a card that he had drew and he had sent me these flowers as well. I couldn’t really believe my eyes when I received any of this.  Just as he had said that he an “amazing conversation” with me and was thankful for it, I was also very thankful to him as well for listening and talking.  He really brightened up my day when we spoke, as well as those days when I received those wonderful surprises.  He especially brightened up my day today with those beautiful flowers… a day that was really horrible.  

Well… I am going to go and rest.  My brain is fried from everything that has happened today.  Hope things turnaround soon!  But in the meantime, please say a prayer and I am going to continue to hang in there.  They don’t call me “WAR HORSE” or the “ENERGIZER BATTERY” for nothing.  I KEEP GOING AND GOING AND GOING.  9 more days til surgery!!

Love,

Fallon

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September 9, 2012

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Everything is so hectic around here.  So much is happening that it is unbelievable.  Every time you think that you heard “everything” or that you are “safe” from hearing anything bad because it is the weekend… something else comes your way.  I keep getting whacked with news below the belt and getting knocked down.  Thank goodness I am still standing, but I don’t honestly know how much longer that is going to be for.

I spoke to my head doctor the other day.  He is making all the necessary arrangements for my arrival in California on September 23rd.  However, I am now bleeding a bit more and suffering more as well.  The doctor really is hoping that I will make it down there, especially because of the bleeding. He really would like me to go to the hospital here, but he knows that they probably wouldn’t know what to do with me.  I am a very complicated person and therefore, he understands me not wanting to go to the hospital here since they aren’t the “experts” in my condition and don’t really know how to handle me. So… the doctor said that I can remain out of the hospital, but if it should get worse, I have to go ASAP into it.  He is just hoping that I will be able to last until I make it to California.

The doctor thinks that I am bleeding from my intestines.  He also thinks that my stomach could also be bleeding, but he is 99.9% sure that at the very least… the bleeding is coming from the intestines. Therefore, the doctor is going to implant a camera during one of the surgeries into my intestines so that he can see what exactly is going on.

He is surgically going to place it in my intestines because I can’t “swallow” the camera.  One time I had that procedure and it was worthless.  I ended up throwing up the camera a few hours later because nothing passes through my stomach.  Therefore, he has to place it in my intestines so he knows that it will be in my intestines.

I also learned that in order for me to undergo the surgeries, including the tube placements in my small intestine, he will be putting me on total bypass.  Since I am so very sick, I cannot withstand the surgery without being put on a heart/lung machine. It really scares me to know that I am that sick that I wouldn’t survive an operation otherwise.  I mean… I knew that I was “sick,” I just wasn’t prepared to be put on a heart/lung machine.  But, the doctor said that his would be the “safest” thing to do under all the given circumstances.

What really scares me though is that I have heard so many stories of people having difficulty coming off the heart/lung machines.  I am extremely nervous because I am not in the greatest condition and if that is the case, I wonder how my body is going to take it.  I am also worried about it because I have a habit of filling up with “air” and it makes it feel like I am going to “suffocate.”  I am so afraid that I am going to be so blown up on gas afterwards that I won’t be able to get the air to.  But, I guess I have no other choice because this is the “safest” way to undergo the surgeries.  After all, these aren’t simple surgeries either.

One of the surgeries that I am having besides having the camera placed in my intestines is being given snail venom.  It is for my underlying neurological disease.  They pioneered it there and only is done there too.  Hopefully it will work because it will get me off some of the meds that is compounding “killing” of my GI system.  Plus, my neurological disease is spreading like a wildflower and affecting everything.  So I desperately need something to stop it because all other treatments have failed in the past.

In addition, I will also be having surgery to get tubes placed into my small intestines to see if they can “buy” me time. I am rapidly deteriorating and rapidly running out of time.  I desperately need the transplant, as that is my only real “help.”  However, it is going to take some time to get that and it is also really risky to undergo the transplant, as it runs the highest rate of rejection of all transplants.  If they could avoid it, it honestly would be the best thing because of how dangerous this transplant is.  I will need a new stomach, small intestine, large intestine, pancreas, etc.  It is extremely dangerous because most of your immune system comes from these organs.  It also not only entails having a neurological supply but some of these organs are just “vascular.”

I have less than a 20% chance of this surgery for the tubes working, but they are willing to try it because we need something to work.  If I was a male, I would definitely have been dead because my levels are way too low.  Thank goodness I am a female because females can live to a lower level.  They can live to a 12, and right now I am like a 12.2. So… I am really borderline death and time is of the essence.  They are hoping to find a tiny piece of intestine that might be viable even though they are pretty sure my entire GI system is completely GONE.  They are hoping that perhaps they might just find even an inch of the small intestines that is viable in the lower portion of the small intestine still. So… they are placing the tubes in me to see if this is the case.  They will bypass my esophagus, stomach, and most of my intestines so that it will go directly into the lower portion of the small intestine.  If it works and I am able to tolerate the tubes, they will then do another operation and surgically implant the tube so that the tubes will be more permanent.  Of course if I can’t tolerate the tubes, that is it and they will be removed.  It will be considered a failure and then we will have no other options probably and just have to wait and pray that I get a transplant in time and that it works.

The doctor is making all the arrangements so that I won’t have to go to the ER first and wait for all hours in there.  He told me that when I arrive in California, there will be a bed waiting for me.  So, I can just go to ADMITTING instead.  The doctor said that since I am arriving on Sunday, I can go straight to the hospital, but I told the doctor that I rather wait til first thing on Monday because by the time I arrive in San Francisco, I am going to be too tired and too weak to go to the hospital.  Traveling really takes a lot out of me and I really am not going to be in the mood to be traumatized by being poked and prodded in the hospital afterwards.  After all, I will be traveling for over 8 hours that day and it will have taken a toll on my whole entire body.  Even though they will have overmedicated me to get me there, I am sure it will still stir up my illnesses, especially my autonomic dysfunction.  In addition, by the time we arrive in San Francisco, it will be late afternoon.  By the time we get to the hotel and everything it will be close to dinnertime and therefore, I figured that even if I did go to the hospital, what would they do me really on a Sunday night?  They probably would begin on Monday anyway, so why spend an extra night in the hospital when I don’t have to, right?

When I do arrive at the hospital, they will prep me for surgery and in 6 hours after I arrive, I will undergo the very first of the surgeries.  I already said to my dad that he BETTER be there when I wake up because he is starting to tease me about saying how he is going to be gallivanting around and sightseeing.  Of course he is only kidding, but still!!  I hate how he can joke around and I can’t.  Anyway… they will have a lot of surgeons in the room because of how complicated I am.  The last surgery that I had there entailed having 4 anesthesiologists in the room just to monitor me.  Talk about making a ruckus, right?  They try to make it as comfortable for me as possible, as they put me “out” in the presence of my dad instead of bringing me into the OR and doing it there. They also do it in that way so that when they transfer me from the gurney to the operating table, it is a lot easier on me too.  I like it so much better because I feel better knowing that my dad is right by my side when I go under.  At least I know when my dad is there, nothing “bad” can really happen.  You know?

I am not sure honestly if I want the tubes.  I feel weird saying this, but I don’t know if I want the tubes to work even though they will “buy” me time.  First of all, if they should “buy” me time, then that would me that it will put me “lower” on the list for the transplant because they will give a transplant to a person who has less time and has no time “bought” before they give it to someone that has a mechanism to keep them alive (even if it is for only a limited amount of time).  So… even though these tubes can basically only last for an extremely limited amount of time, it might force me to go lower on the list and therefore, it might really hurt my chances of getting a transplant.  But… on the other side of the coin… the transplant is so risky and dangerous that maybe it is better off to be able to survive on time “bought” and not have to undergo the transplant even though the transplant would give me back my life and the tubes would not let me eat anything ever again.  If the transplant would definitely work, it would be the perfect option because I would get my life back.  I would be able to eat whatever I want, whenever I want.  But it is so risky.  However, if I get the tubes, I will never put a morsel of food in my mouth again.  It really is a no win situation… that is unless I go for the transplant and it is a HUGE success.  So… is it worth having the tubes work?  I just don’t know.

I’ll also be honest with you because honesty is the best policy and I promised to always be honest with everyone.  I am also really afraid of getting the tubes because I am afraid of seeing them.  I know that other people won’t really see them, but knowing that it is there and such… I don’t think I can handle it.  It really is bothering me to know that I am going to have a tube coming out of me.  Another thing that is bothering me is knowing that I won’t be able to eat anything at all ever again.  I mean… eating is such a big part of life.  Who would want to go out with me if I couldn’t eat?  I know I would feel uncomfortable sitting at restaurants and such and watching people always eat.  Wouldn’t others feel uncomfortable as well just having me watch them as well?  I will always be hungry too because feel “full and satisfied” is not just about nourishing your body.  It is about taking in food in your mouth and your stomach so it registers in your brain.  Since I will never have this, I will always be hungry and my stomach will always be rumbling.  I don’t know if I want to have this feeling of hunger all the time.  Even though I technically won’t be “starving,” I would still be feeling hungry because I am not “eating” and it is missing my stomach.  It isn’t like a NG tube or G tube that goes into your stomach.  People that have those feel “full” because the food enters their stomach.  My stomach is going to be out of commission.

Well… I also spoke to the doctors today and it turns out that I have more problems.  Every time I think it can’t get any worse, it somehow does.  I also thought that I was kinda “safe” from getting bad news today because it is the weekend and doctors really don’t work on the weekend.  But… I guess I was wrong. I guess like the doctors said to me in the past, “They don’t call it Stanford for nothing.”  Doctors there are really different than any doctors elsewhere.  They really do care.  They actually call me back whenever I have a question, have meetings together so that they constantly talk so that they are on the same page, and they even go out of their way to see me.  I can’t even believe their office hours because instead of a traditional 9-5 day, they work from 7 AM to 7 PM.  So, when the phone rang today… I was kinda surprised to hear from them.  But, when I saw that it was them, I kinda knew right away that it couldn’t be good because why else would they be calling?

I found out so many things.  First… Turns out that I have severe scoliosis in my thoracic spine. It’s called Dextroscoliosis. Dextroscolosis is a medical term that refers to a curvature in your spine that, when viewed from the rear, curves to the right. In the case of thoracic Dextroscolosis, this curvature is located among the 12 vertebrae that also serve as connection points for your ribs. These vertebrae are designed to help stabilize and support your internal organs and the weight of your upper body.  They are very worried because not only does it contribute to muscle fatigue and pain, but it is interfering with my breathing.

However, in addition to the Dextroscoliosis, they found out that I have severe osteopenia in my spine as well and in the vertebral bodies.  They are very worried about this because my bones are paper-thin and they can’t take any stress.  They are worried that the pressure exerted by the air/gas that is in me will end up collapsing the vertebral bodies and I will become paralyzed or something worse.  Since my GI system has failed, I am filled up too much with air and gas and it is not only putting pressure on my organs and causing them to fail, but putting pressure on my spine as well.  It is also twisting my colon and if it completely twists, it will be an extreme emergency because I can die. In addition, once those vertebral bodies collapse, we are in for HUGE problems.  Something has to be done.  That is why I need to go to the hospital to get the “rectal tube.”  It will try to alleviate the gas/air in my system, but it will only be temporary.  It will immediately come back soon after and therefore, it will be a merry-go-round to the hospital constantly.

Secondly, they found out that my sacroiliac joints are deteriorating on both sides. So, it is causing a lot of problems and is especially not good considering I am only 30 years old.

Thirdly, they found masses in my lungs.  They are pretty sure that they are granulomas though.  They think it is because I am aspirating like crazy due to my poor GI function.  It is not good because it can lead to trouble breathing and such.  Aspirating itself can give me really bad infections in the lung, so it really is no wonder that I have these granulomas.  After all, granulomas form when the immune system attempts to wall off substances that it perceives as foreign but is unable to eliminate. Such substances include infectious organisms such as bacteria and fungi.

Fourthly, I have thickening of the pleural wall of my chest cavity.  The pleural cavity, in humans, refers to the body cavity that surrounds the lungs. This cavity is composed of a bi-layered membrane termed pleura. Bilateral pleural thickening refers to thickening of this membrane in both lungs, and causes trouble breathing and chest pain.

Fifthly, I found out some info finally about my brain tumor.  Due to everything that is going on with me, they are holding off a little longer with operating.  They want me first to see a neuro-opthamologist.  From the last MRI report, the tumor grew a bit, but because it is too risky to operate, they are waiting. It measures 10 by 6 and right on the pituitary (the master gland of the body) so it is causing its own set of problems.

Finally, my bloods are not so good, as my folate and B12 level are a way too high. It could mean a lot of things, but it probably shows the malfunction of my GI system and how I am not absorbing. It could also mean Leukemia, but I doubt that I have it. Yet, it still keeps popping in my head as a possibility even though I am 99.9% sure I don’t have it.  The highest folate should be is 570 and mine is 1975. I am so nervous.

The doctor did say that he can’t wait to see me and that “They are all looking forward to seeing me.”  It kinda drives me up the wall whenever he says this because I CAN wait.  I am so very nervous to go and I really don’t want to go despite knowing that I need to go in order to save my life.  I just hope that I will be able to go because I really need help with the finances.  I don’t know how on earth we are going to afford this.

So… I have a lot to undergo when I go to Cali.  I have to just make it to Cali and hold out til then.  I haven’t been feeling well at all and I have been having a lot of “out of body” experiences.  It is the weirdest thing and only people that really undergo it can really understand what I am saying.

I just can’t believe that in 2 weeks, it could very well be that I might never put another morsel of food in my mouth.  I asked my mom if the night before I leave for California if we could have an ice-cream party dinner.  I said can we just eat mounds and mounds of ice cream for dinner and load up on all the toppings and everything since it is my absolute favorite and since I won’t be able to have it once I get the tubes.  That is one thing that I am definitely going to miss.  I just LOVE my ice cream.  My mom said it was OK, but I don’t think she was taking me seriously.

My mom did ask me what I would like to have to eat in my last few days of eating.  She asked if there was anything that I would want to have.  Gosh… I never really thought about it until she asked me that. There is so much that I want to eat, I just can’t name just one. I have decided that I am just going to enjoy as much food as I can for the next 2 weeks!!

My dad’s birthday is today.  I really wanted to make his birthday special for him, especially since he does so much for me.  I also wanted to make it special for him because this could be the very last birthday I am here for.  It is a very real possibility of that because I am rapidly deteriorating and even the docs don’t think that I have much longer to go.  I just feel so bad because my dad has been working so very hard just to try to get money for my treatments and to get the “work” out.  He has been working nonstop and is basically ready to collapse.  He works 7 days a week from like 4 AM and doesn’t get home til 7 PM. He is totally exhausted.  I even have to wake him up and get him out of bed despite him having his alarm clock set.  Thank goodness I never sleep, right?

I am really upset because he even has to work on his birthday, which is something I am really upset about because this should be his day to enjoy himself and relax.  He definitely has given up so much for me.  I can never thank him enough for all that he has done for me.  My dad is not only my “dad,” but he is my best friend and my “hero.” I definitely wouldn’t be here today if it wasn’t for him.  I got him a nice cake, but I wish I could do more.  But due to the circumstances, between the finances and because my disease limits me, I really can’t do anything more which bothers me. I just hope he knows how much I love him and how much I appreciate all that he has done for me.  I definitely wouldn’t be here today if it wasn’t for him.

What scares me the most about this whole disease is not being here for my dad.  I am most scared of leaving him because I know he wouldn’t be able to survive. I am very scared for the surgeries in 2 weeks too because my dad will be there alone.  I am afraid that if something happens, no one will be here to support my dad.

Well… gonna get going. I really desperately need the help of others.  We can’t really afford treatment anymore, and we definitely can’t afford California without help from others.  If you can do anything to help such as by donating or spreading the word that we need help or even saying a prayer… that would be awesome.  Thank you so much for everything.

Love,

Fallon

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September 6, 2012

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Hello-

 Just wanted to give you an update since more news is known about the upcoming trip to California since I spoke to my head doctor tonight.  Every time I think that it can’t get any worse… it somehow does.  I just can’t believe everything that has been happening, especially since I have only been home from California for such a few days.  In fact, with everything happening and such, I couldn’t remember when I came home from California.  I couldn’t remember if I just came home this past weekend or the previous weekend because so much has been happening…. way too much than is possible for a few days.  But, it is amazing that it has only been a few days and I just got home this past weekend because of everything that has been happening.  My head is literally spinning with everything going on.  I think it is going to spin right off my shoulders, so if you find a headless body, it will probably be me.

 I can’t believe that I have just gotten home this past weekend and I am already turning around to go back to California. It is like my “home away from home.”  I know how detrimental it is that I get back to California and how imperative it is that I get back ASAP.  I am rapidly deteriorating and if I don’t get back soon… I fear that I am going to die.  I really don’t have much longer.  I know that it is getting really “bad” because I can feel it.  You wouldn’t understand it unless you are really going through it, but it is something you just “know.”  My body is just “giving in.”  I can’t take the suffering anymore.  My body is just getting so tired of suffering, so tired of fighting.  I am so mentally, physically, and emotionally exhausted. 

 Every time I think that things are going to get better, they just continue to worsen.  I just don’t know how much longer I can take. Even the doctor confirmed that it is really getting “bad”… worse than it has ever been because my head doc has lost his sense of humor and he also told me frankly that I am “not doing good and need to get to California NOW because I am dying!”  When I asked him “If I am going to be ok?”  The doctor even responded with an adamant statement of “NO!”  I am so very scared. 

 I know things are so bad and I take it seriously too because it is coming from my doctors in Stanford.  These doctors happen to be the BEST doctors in the world.  I love my doctors there.  I wouldn’t trade them in for anything.  The only thing that stinks is that they are on the other side of the country and it is such an inconvenience to get there.  However, they are the best of the best, as the hospital is ranked very highly in the United States.  They have pioneered so many treatments there, which I am also going to be undergoing such as the snail venom.  They do all high-risk surgeries and surgeries that no other hospitals in the country perform such as the full GI transplant that I am having.  Only 8 hospitals in the country do this transplant, and they are one of them.  So… if they are telling me to “worry”… I think it is time to really “worry!”

 I spoke to my head doctor tonight from California.  It appears that plans are being made and everything is getting in place for me to arrive in California.  My doctors in California have even been having meetings together and talking in order to arrange everything and get everything organized so that everything will be situated and everyone will be on board with all the plans when I arrive.  However, it is all contingent on the fact that I have the funds to go, as right now I don’t have the money.  I just don’t know how we are going to afford this.

 The doctor doesn’t like what is going on with me at all.  He really said that I “don’t have much longer” and it is imperative that I get to California as soon as possible.  My little body is shutting down and it just can’t take things much longer.  I am having such a difficult time swallowing, as I can literally not swallow anything anymore, not even liquids.  I was having trouble swallowing sucking candy before I left for California, but I thought it was just the candy.  Then, when I was in California and couldn’t swallow, I thought it was perhaps the coffee and I just didn’t like the taste.  However, it continued to worsen when I got home and it is at the point now where I can’t swallow basically anything.  It is really worrying the doctor.

 In addition, I have been having a lot of mucous as stool and the mucous has been black.  They think that I have bleeding somewhere in my GI tract, but they don’t know where.  They say it is imperative to find out what is going on because it is not normal to keep expelling mucous and have this bleeding.  So, when I go to California, they will be doing this investigating.  I don’t know how they are going to be able to do this though because the last time they tried to do a colonoscopy in Pennsylvania, it couldn’t be done.  They gave me a NG tube to try to “prep” me and after placing the NG tube up my nose and into my stomach, the tube ended up backing up after pouring only less than 1/4 of a gallon of that “Go Litely” stuff that makes you really go to the bathroom.  My stomach was so bad that it made the tube back up. So they had to remove the tube and that was that.  So… I wonder what they are going to do in California to find out what is going on.  So… I guess we will find out when we go.

 In addition, I told the doctor about how foul my gas smells. I told him how I never smelled something so bad.  Sorry to sound so disgusting, but is true.  When I told the doctor this, he told me that I have some sought of BAD bacteria in me that is taking over.  He said that I am in really BAD shape and need help ASAP.  I am really borderline death between all this and my level being so low too as I am only a 12.2 level and girls can’t live below 12.

 Even though I am doing so horrible and it is imperative that I go to the hospital ASAP, my head doctor is only in the hospital at certain times. He doesn’t really want another doctor taking care of me because he knows my case and he is the BEST.  Therefore, I have to wait til he is back in the hospital, which is on September 23rd.  I am so very scared to go to California.  I will be arriving in California on Sunday and the doctor will be admitting me into the hospital on Monday.   The doctor said that I could go straight to the hospital and be admitted Sunday night, but I will be tired and in pain and exhausted from all the traveling.  By the time we arrive in California, it is just better if I get admitted the next day because this way I can “relax” a little and regroup.  After all, I figured even if I went into the hospital Sunday night, it wouldn’t be like they would do anything anyway that night.  They would wait til Monday.  So… I will just be admitted first thing Monday morning.

 September 23rd isn’t too far away, but I still have time that I need to “hang” in there and make it.  Each day is a day that I need to remain strong and a day to battle staying alive.  After all, we never know from one day to the next if I am going to make it or not.  There are so many times we don’t even know if I am going to make it through the night.  Everything is just so touch and go.  So… I just gotta make it til then.  Hopefully that will also give me some time to get some money together also because I definitely can’t afford it as of now.

 Not only will I be admitted on Monday, but I will undergo surgery Monday as well.  Due to my condition, they are going to basically “shut my entire body down.”  They are going to put my entire body under general anesthesia and bypass because of how it is doing.  It just isn’t safe any other way.  When the doctor told me this, it kinda freaked me out because to hear that your body is so bad that it won’t survive surgery unless you are on total “bypass” and such… it really puts a scare in you.  You know?

 The doctor will be placing tubes in me.  He wants to see if there is any viable piece of small intestine in me.  Even though my entire GI system (stomach, small intestine, large intestine, etc.) are dead, he wants to see if perhaps he can find even a tiny piece of viable small intestine if goes low enough into the small intestine.  So… he will bypass the esophagus, stomach, and most of the small intestine.  They will then tube feed me and see if I can “accept” it or not.  They will see if it will be too “painful” or not, especially since I have this underlying neurological disease.  They will see if it stirs up my autonomic dysfunction because anything that is “foreign” stirs up my autonomic dysfunction and causes further problems because of my extreme hypersensitivity.  They will see if the stuff forms a “bag” because my intestines are so bad that it will have no where else to go.  If any of this happens, it will be considered a “failure” and be removed.  If it should work, then I will have another operation and they will permanently and surgically place the tube through my abdomen.

 The chance of the tubes working is extremely small.  I have less than a 20% chance of this happening and working, but they are willing to try this because they have no other choice.  They are hoping that this will buy them some time and perhaps also make me stronger too. I definitely need to be stronger because I am so weak.  It would definitely help with the transplant because it is so risky and such.  I will need all my strength for it.  Plus, they want to put a pump in me with snail venom, and they can’t do that without getting me to gain some weight.

 In a way, I am even more fearful for the tube to work because if it does, I will never then eat or drink ever again. Therefore, my stomach will be rumbling and hungry all the time since feeling “full” isn’t just about nourishing your body.  It is about putting it in your stomach and feeling it in there, as well as putting it in your mouth.  Since I won’t have that anymore, I will always be hungry.

 The doctor said that we will work together as a “team.” I told the doctor how fearful I am of the tube.  I told him how scared I am that I am going to be in so much pain and I am scared that they won’t listen to me when I tell them to stop the “tube” feeds and such.  I also told him how I am scared that the are just going to leave me there because of what has happened in the past in New York.  I explained to them how in New York, doctors really don’t listen to patients.  When you need to talk to them, even when you are suffering, it takes them forever to come.  In the meantime… you are there suffering.  Plus, whenever you don’t feel well and want something that is different from the doctor in New York wants, they always end up winning out because they never listen to the patient.  That is another thing that scares me. 

 After expressing these fears to the doctor, the doctor said to me that I had nothing to be afraid about.  He said that we are going to “work together.”  He said we are going to go so slowly.  He said “the feeds are going to be so slow and so little, especially since I feel absolutely everything that goes into me.”  I even feel all the IV saline and solution that goes through my veins because I am so hypersensitive.  The doctor said to me that if “if I want it stopped, they will stop it immediately.”  He also assured me that if I needed him, he would be there immediately.  So, he really made me feel comfortable and made me feel better knowing that he wasn’t going to just “leave” me and do things his way like it has been done before in New York, which has led to further suffering and agony.  You know?

 I really have the most wonderful doctors.  He is really the best.  He is setting everything up and trying to make it as “easy” as possible for me, as well as so I don’t have to worry about it.  He is arranging all the other procedures that I will be having such as getting the snail venom, as well as continuing the transplant process since that probably is my only chance of living even though it is so radical, risky, and dangerous.  It is the transplant with the highest rate of rejection. 

 I will also be undergoing a procedure where I will be getting snail venom.  Ideally it should be going into a pump.  However, since I am too small for the pump, they are going to put it in my spine, and hopefully it will still do something.  It is for the underlying neurological disease.  It was pioneered there and used when all other treatments have failed.  It treats pain by directly blocking pain signals.  It blocks the nerve channels that transmit pain signals as they travel up the spine.  The best thing is that it doesn’t really weaken. If this works, it should simmer my autonomic dysfunction too.  It would help me get off the drugs too that are compounding my GI system shutting down as a lot of my drugs that I take for my underlying neurological disease compound shutting down my GI system.  However, it is really risky as it can cause psychosis and such.  It can even upturn memories that have been repressed during an earlier time.  So… I have to have a psych clearance beforehand to make sure that I am “ok” to go for it.

 If the snail venom should fail, they will probably place me in a 5-day ketamine coma.  Even though I need an amount that is not FDA approved and have to go out of the country to receive it, they will to a more intensive dose than the one that I usually receive in New York.  I usually only get ketamine for one day in New York at a time.  However, in California, I will undergo the coma for 5 days in the ICU. 

 When I go to Cali, they are going to be working more on the transplant process as well.  It is such an intensive and long process to get one. I still haven’t decided where to get it still, and I really have to make my decision soon.  I have a choice whether to have it in California, Nebraska, or Indiana.  Nebraska is the biggest center, as they have done like 4 a year and have a one year survival of like 92%.  California does 1-2 a year and has a 1-year survival of 85%.  It is all in the numbers.  Also, my entire team is in California and I can get the snail venom or ketamine there too, so that is an added plus too.  However, I do know that if I go to Cali, I love the doctors there. I also know that if I list there, I am so sick that I will get the organs probably within 2 weeks or so.  I don’t know what would happen if I went someplace else.  So… I gotta start making decisions.  We also have to figure out things because it will be so expensive too.  Someone will also have to be with me at the hospital for about 3 months.  So… it is causing a lot of problems because there is no one really to do that because of the business.  No way can my dad be away that long.

 I am so very sick and a lot will be done.  I am scared, but at least my dad will be with me.  I just wish my mom would be with me too. At least my dad will be in the hospital all the time with me though because I have become phobic of hospitals.  I know it sounds strange because I have been in the hospital so many times, but I have become petrified of them.  I literally hate them.

 I just hope my dad will be able to find his way back and forth to the hospital and hotel without me.  I am usually his co-pilot because without my GPS system, and me he has no way of knowing how to go.  I even know how to go by now to the hospital since we have been there so many times.  However, he still depends on my iPhone GPS system.  I am sure that he knows how to go too, but he doesn’t trust himself.  However, I will have my iPhone with me and therefore, I don’t know how he is going to have the GPS system because it is in my iPhone.  My dad already said to me “We better pack the GPS system from home so I know how to get to the hospital.”  After all, I will end up calling my mom at home and I will be like “where is dad?” and she will be like “haven’t heard from him in days… have you?”

 My dad isn’t handling things very well with me.  My dad has always been the “rock” in the family.  However, he is really falling apart. He tries not to show it, but he is really showing it in the way that he is angry over everything.  He is extremely jumpy and he won’t talk about what is really going on or the possibility of dying.  He has it that he is going “freeze” me before anything.  My dad keeps saying things like “you can’t go anywhere because we won’t take care of ourselves” or “If you die, we won’t be taking our medicines” or “if you die, you wouldn’t even recognize us afterwards because we will be fat as a house.”  He is constantly saying things because he is trying to keep me going.  Yet, I hate when he does that.

 I can’t blame him for not wanting to lose me.  What parent wants to lose his or her child?  But I am suffering so much.  Doesn’t he think that perhaps it might be better off?  At least I will be out of my suffering.  But, my dad told me that he  “Doesn’t care.” My dad says that he is “selfish.”  I know how much he loves me and I love him too, but it is a lot of stress on me.

 I spoke to a counselor about this and what has been going on.  She said that my dad is already “grieving” and such.  We all know that if something happened to me, my dad would NEVER recover.  As for me, she said that I am in “Hopeful Denial.”  The reason she said that is because I am still “hopeful” that I am going to get better. Yet, she says I am in “denial” because I still feel like this is all in my “head.”  I feel like I am going to wake up and this is all going to go away.  I feel like if I really wanted, I could make this all go away, as if I was in control.  Even though the doctors have told me numerous times that it isn’t in my head and not in my control.  I still think it is even though I know deep down that it isn’t.  They say that this is how I am dealing with it.  They say that since I was able to achieve everything that I set my mind to and this is something that I can’t achieve and overcome, this is my way of “still controlling” the situation.  You know?

 Gosh… I really need to go back to California and yet, it really is impossible.  Even though everything is being scheduled, it isn’t 100% that we are going to be able to go because right now we don’t have the money to go.  It really depends on a lot of factors. So… essentially my life rests in the hands of others because I need money from others in order to help pay for treatment since my family can no longer afford it.  I don’t know how on earth we are going to do this because we are basically “broke!”  It is really worrying me.  We still have so much debt from the last trip.   I don’t know how on earth we are going to survive paying for Cali to go back again in such a short time.

 In addition, I am so very worried about my dad because he is working harder than ever to try to make “ends” meet.  He is already working 7 days a week from like 3 AM to 7 PM.  There isn’t much more that he can possibly work. He jokes around saying that he is going to “invent more hours in the day,” but in reality… you know that isn’t possible.  Not only is he working like a horse, but he is also running himself ragged.  He is really worrying me because he is no youngster. He is going to be 59 on Sunday and it isn’t like his job entails just sitting around.  He is constantly on the “go” and his job entails all physical labor.  I just don’t know how on earth my dad can keep up this pace.  I am so worried that something is going to happen to him like a heart attack or something.  Between the stress of what is happening with me and the stress of the business… he is a heart attack waiting to happen… not to mention that it runs in his family and everyone has been dying earlier and earlier in his family, as his father died at 66.

 There is no way that my dad is going to be able to take me to California in such a short amount of time.  My dad can’t just take off and go because the business suffers.  When he doesn’t work, there is no money to be made and as a result, the business is definitely going to crumble.  Customers aren’t going to wait around for him to return, but they will just move on.  That is why my dad has the motto “the early bird catches the worm.”  He knows that if you aren’t there to grab them, they are just going to move on.  Therefore, I don’t know what is going to happen if he comes with me to California because not only will he be away from the business, but he will be away for awhile, which will mean no work will go out for awhile too.  This will also mean no income for my family too and therefore, how are we going to pay for things such as our mortgage?  We are having a hard enough time paying for things as it is because of my disease, I don’t know what we are going to do if there is no money coming in. 

 I am so very scared because my family has definitely suffered enough.  They have given up way more than I can ever thank them for.  I don’t want them to lose the business or the house because of me.  If they would lose that stuff, I would NEVER forgive myself.  I just don’t know what to do.  My dad tries to make up all the work that he is going to be missing before we go to Cali so that it isn’t money that we “lose” out on and customers that aren’t attended to, but my dad still is catching up from the last time we went to California. Now with having to go back to California again so soon, he will have to make up that work that he will be missing too. If he hasn’t caught up with the work before, how is he going to make up this work too?  He is trying to be superhuman and do EVERYTHING, but it is literally impossible.  There is no way that he is going to be able to catch up on the work that he will be missing if we go back to Cali now when he has still work to catch up from the last trip.  It is just snowballing out of control.  I am just so very scared because I don’t want my family to suffer anymore.  Like I said before, if anything should happen to my house or my dad’s business… I would NEVER forgive myself.

 With all that is happening, I didn’t want my dad to even work on his birthday, which is this coming Sunday.  He has done so very much for me and has been working himself ragged.  He works so hard that he literally comes home and collapses.  He is just mentally and physically exhausted.  There is only so much that he can take.  You know?  With him doing so very much and him being such a great dad, I would really love for him to be able to relax and enjoy his very special day.  He enjoys to have one day devoted just to him such as his birthday!! After all… it is his SPECIAL day and he should be treated like “royalty.” 

 However, he is working because of me.  Since we are going to California and everything, my dad has no choice but to continue to work himself ragged, especially on a day that should be made for celebration and a day that should be a day of “R & R” for him.  I would have really loved for him to have been home because I really would have loved to have spend the day with him since this can very well be the last birthday I have with him.  It just isn’t fair that because of me he can’t enjoy a day that is meant to be a day of celebration and a day meant to be “special”.  I feel so bad for what I do to my dad.  My dad says that he “doesn’t mind at all,” but I mind because he does so much for me and it isn’t fair.

 I doubt very much if I will be around for his next birthday, so I wanted to make it as special as I could.  I already bought him shirts and gave it to him because he needed them for California.  I figured that since he needed clothes for Cali and he wouldn’t get them by himself, I would treat it to him so that he would have them.  At least it was something he could definitely use.  I also wanted to make a cake for him and have a clambake or something for him. I can’t really “go out” and celebrate his birthday, which is something I would love to do because my disease and illness limits me and kinda forces me to stay in my house, so I would like to make it as nice as possible in the house.  I can’t even go out to dinner, which I would love to do, so I wanted to make him a really nice meal.  After all, he does so much for me and I just want to show him how much I love him, appreciate him, and how wonderful he is.  My dad is not only my “dad,” but he is my best friend, my “hero” and my idol.  I would definitely not be here if it wasn’t for him.  My dad is definitely one of a kind.

 Gosh… so much is doing… I can’t even tell u how much I can’t take it anymore.  I am reading a great book though.  I just started it, but if it is like any of his other books, then it is going to be great.  It is by the same author who wrote TUESDAYS WITH MORRIE and THE FIVE PEOPLE YOU MEET IN HEAVEN, which is Mitch Albom.  The book I am reading is called THE TIMEKEEPER.  The inventor of the world’s first clock is punished for trying to measure God’s greatest gift. He is banished to a cave for centuries and forced to listen to the voices of all who come after him seeking more days, more years. Eventually, with his soul nearly broken, Father Time is granted his freedom, along with a magical hourglass and a mission: a chance to redeem himself by teaching two earthly people the true meaning of time.  He teaches one a teenage girl who is about to give up on life, the other a wealthy old businessman who wants to live forever. To save himself, he must save them both. And stop the world to do so.

 There is so much to do and so little time before the 23rd.  I just hope that I can accomplish everything.  I also have to get a new suitcase because I not only need a suitcase because it is ripped, but I need to get a little suitcase so I can bring it to the hospital.  But, like always… that is more money.  Why does everything have to cost money?  I wonder what life would be like if money didn’t exist.

 Well, going to rest. I am not feeling well and going to rest.  Thanks again for standing by my side.  Like I said before… I am so very scared. Not just scared for me, but very scared for my family, especially for my dad because I know that if anything happens to me… my dad would never recover. I am really pushing on because of him. I don’t want to let him down.  I really am hoping for a brighter tomorrow even though the road is difficult.  Yet, it is people like you that give me the STRENGTH to continue on. 

 Love always,

Fallon

 

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September 4, 2012

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Hey-

 Well… I am writing to let you know the latest, as so much has happened since I have gotten home already and I promised to keep you all updated.  A lot has been happening, but since it all really hit the “roof” today… it is all fresh and still settling in and I am still so overwhelmed by it. My head is still spinning from everything that has happened today. I am really not feeling well, and therefore, I don’t know how long this post will be. I will try to tell you as much as possible, but I might have to continue at a later time.

 I can’t believe all that is happening. I just got home from California and I am already heading back there.  It is like my “home away from home!”  Then again… it will be my “home” when I go for the transplant because I will be there for about 3 months or so.  I don’t know how on earth I am going to manage that.  I don’t know how we are going to afford that and I don’t know how on earth dad is going to be able to take that much time away from the business to be with me because if he isn’t there to work, the business will crumble.  Without him working, there is no work going out and therefore, no income is being made.  When my dad takes me to California for just even that one week, it really hits hard to my dad.  I don’t know how on earth he is going to manage to be away for 3 months. 

 We really have to start making decisions because we have to get back to California ASAP.  I am really not feeling well and I am literally on “borrowed time!”  I never thought that things could get so bad to be honest with you.  I knew that I would have to return to back to California for surgery in 3 weeks, but I didn’t think that it would come down to being so URGENT and that I would be in such a mega crisis.  I never thought that my life was going to take such a downturn so fast and I didn’t think that my life was going to be at stake like it is.  I have always been walking a “tight” rope, but right now it is about to snap.  I really need to find a way to get back to California fast because time is of the essence.  My life is literally at stake.  We don’t even know if I have 3 weeks to spare, but we are hoping I will make it.

 I haven’t been feeling well, but honestly… that isn’t anything new.  I am always not feeling well.  But when I was in California the last time, I started to feel worse and different.  I started to have severe stomach pains and I was also having a very difficult time swallowing, especially when I ate.  I always had this problem, but it was nothing like this.  I thought it was really “nothing,” as I thought it might have been the food that was there.  I thought perhaps I just couldn’t stand the taste of their food or coffee or something.  But, apparently it was not that because when I got home it didn’t stop.

 When I got home, it just continued to get worse.  I was back to eating my regular stuff, so therefore I knew it couldn’t be about eating the “wrong” stuff that was making me sick.  Not only that, but as the days continued to progress, the difficulty swallowing and my stomachache continued to worsen.  It has only been a few days that I have been home and yet, there has been a significant difference in just these few days.  I can’t believe how much it could worsen in this short amount of time.  I literally can’t swallow anything… pills, liquid, ice cream, eggs, etc. … you name it!! No matter how soft and how easy it was to go down before, I just can’t swallow it now.  It feels like my swallowing function just doesn’t work. I can’t really eat or swallow anything anymore. My stomach is all distended and feels like there’s holes and obstructions and blockages. I am so uncomfortable and in so much pain. I am also suffering with lots of blood and mucous coming from the bottom half.

 My stomach not only hurts, but it is very distended.  I have severe gas pains and it goes beyond just being in my tummy.  It extends to even below my tummy and into my lower abdomen, which is into my intestines.  It is as if I want to take a pin and just “pop” me. 

 Being all filled up with air the way I am and distended kinda makes me worried too because I am supposed to have surgery when I return to California to see if there is any viable parts of the small intestine left.  They are pretty much sure that they aren’t going to find anything since my entire GI system is basically gone (my stomach, small intestine, large intestine, etc. are all paralyzed), but they are hoping that perhaps if they go low enough into the intestines… they might be able to find a viable portion.  Therefore, they are putting a tube in me that will pass through my nose, down my esophagus, through my stomach (that will bypass it) and into my small intestine that will go into the bottom portion of it to see if there is any viable portion.  They will try to tube feed me into the very end of my small intestines and see if my body will accept any food whatsoever. 

 The doctors insist that I have less than a 20% chance of this working, but they are willing to try it because at this point, we are really desperate.  I am basically on borderline death, as my BMI is so very low.  I am so very lucky to be a female too because if I was a male, I would be dead already since a male cannot last below a BMI of 13 under any circumstances.  Fortunately, a female can last down to a BMI of 12 and therefore, I am still able to survive. I am surviving, but barely because my BMI is like 12.2 at the current moment.  Therefore, I am literally knocking on “death’s door.” Plus, they want to give me tube feedings because they want to make me stronger for the transplant as well because the transplant is so very risky and dangerous, and I will need as much weight and nourishment to recover. 

 If I am able to accept the food, they will then do surgery and permanently place the tube in my abdomen and it will come out of there instead of my nose.  But, they have to make sure that I “accept” the tube first and that I don’t form a ‘bag’ there because my intestines are dead and there is no place for the stuff to go.  If I do get the tube, I won’t ever eat ever again.  This kinda bothers me because I will always be “hungry.”  Feeling “full” is not just about taking in food and feeding yourself.  You get the “full” sensation because you feel it in your stomach and you put it in your mouth.  Since I won’t be able to do that anymore, I will always have a rumbling stomach.  I don’t now how I would be able to manage that because I am sure that will be very bothersome.  Plus… I am worried because I don’t know how I will feel “Watching” everyone in the world eat and I can’t.  Wouldn’t other people feel funny going out with me and having me just “watch” them?  Well, I guess I will just cross that bridge when I come to it.  First thing is to see if I can tolerate the tube.  I might not even have to worry about that part because who knows if I can even tolerate it.  I have less than a 20% chance.  So… lets first see what happens.

 However, I am really scared because due to all this distension in my stomach and how it is hurting me, I really don’t think that they are going to find any viable part.  My intestines are all distended and it isn’t looking really good.  I have a really bad feeling about this and this procedure.  It really doesn’t look so promising with the way that I am feeling and the way that my stomach and intestines are looking at the current moment.

 Anyway, since things have gotten so bad, I did call the doctor in California to let him know what was going on.  I wasn’t expecting to hear the news that he gave me.  Even though I knew that I wasn’t feeling well, I didn’t realize how bad things have gotten and I didn’t realize that I was really in a state of “emergency,” and even more so than before. 

 Anyway… when I spoke to the doctor in California today, I explained everything to him.  Dr. Winter is one of the nicest doctors I have and he is so intelligent.  He set up so many programs in Africa and I think if anyone can get me “better” or help me… it is him.  I have the most amazing doctors in California.  They always call you back and what a relief that is because when you are sick, you always want an answer.

 I am not doing good at all and when I spoke to Dr. Winter, I was not expecting to hear what he told me.  I wasn’t expecting to hear that I was really in such an “emergency” or in a “crisis.”  But, Dr. Winter told me that he wanted me hospitalized ASAP because I could die realistically any time. Dr. Winter does not like what’s going on AT ALL.  He told me that when he saw me that he was “very scared for my life” and now he is even “More so!” 

 Dr. Winter wants me to get to California as soon as possible and be hospitalized so that I can have a lot of procedures and surgeries performed.  He is very worried about the swallowing, the stomach pains, and the distension.  He is also so very worried because I am bleeding from down below and having a lot of mucous pass too.  He told me that he wants to get to the bottom of what is going on because it can easily kill me anytime.  We don’t have time to play with anymore.  Dr. Winter was also very concerned with what was happening with the transplant team as well, as that most likely will be the only thing that will save my life.  Even though he is my doctor, the transplant team is another team that works jointly with him.  The doctor is really concerned about the transplant and what’s happening with that process because apparently I need it more than ever. I’m literally REALLY RUNNING OUT OF TIME QUICKLY!!!

 However, even though I have all this going on, Dr. Winter wants me in the hospital when he is the attending doctor on the inpatient ward so that he can be in charge of my case.  I am an extremely complicated case and he doesn’t want just any doctor in charge of me.  We thought about at one time “tag” teaming, which means that another doctor would take care of me, but he wants to be the one since I am so very ill and knows me best and is supposed to be the BEST doc as well.  However, he won’t be in the hospital until September 16th, and therefore, he wants me to in the hospital then.   

 I am so very scared.  I know that it is very bad and I know that this is worse than it has ever been. I know that it is definitely something to worry about and I know that we are really in “crisis” mode because of what he said to me when I asked him, “Am I going to be ok? I’m not doing too well… Am I? I’m going to die, aren’t I?” When I asked him those questions, Dr. Winter responded by saying, “Things don’t look too good. No you are not doing good at all. You gotta get here!”

 I also know things are bad because when I tried today after receiving this bad news to make jokes with doc and laugh it off… No one was in a joking matter anymore.  Even when I went to my appointments in California when I was there, I was still able to “joke” around with them.  However, no one was laughing or wanting to ‘joke’ around anymore.

 I also know things are bad for one other reason.  Dr. Winter didn’t really want me on any more medications for pain when I went to see him in California. However, when I spoke to him today, he was wanted to give me more stuff to make me more ‘comfortable.’ If things weren’t so bad, why would he all of a sudden want to give me pain meds when he was so against it before?  You know?

 Dr. Winter wants me to come September 16th or September 23rd.  He gave me those 2 weeks to play with.  I will be hospitalized for at least a week and during that time I will have numerous and various procedures.  Some procedures and surgeries that I will have include the tube surgery, the procedure where I will be given snake venom, etc.  They want to see if they can help my underlying neurological disease by giving me snail venom.  They pioneered it and even though it is preferred to go in a pump, I am too small to have one.  Therefore, they are just going to insert the venom into my spine and hopefully it will still do something.  So much will be happening during that time and thankfully, Dr. Winter will coordinate everything.  That is another great thing about my California doctors.  They are fantastic in coordinating things.  They make sure that everything is coordinating and they make sure that they always talk to each other.  It is a real “team” approach.  I really can’t ask for better doctors.

 The doctors in California are really so very caring.  I couldn’t believe that Dr. Winter told me that he wanted me to discuss everything with my family about when I was going to come back and all the plans, and then he will call me tomorrow to finalize everything.  At first he told me that I can call him tomorrow and let him know, but then he said that he will call me just to make sure that we end up talking.  We are going to have a little meeting to get everything situated!” That’s some doc to make sure that he calls and such. You know?? He’s organizing everything including all the hospital admissions, surgeries, snake venom, etc. He really is taking everything off of our shoulders and making it as easy as possible on us.  It really is a big help. 

 Even though the doctor really wants me September 16th, I think we might have to put it off til the 23rd even though my life is really at risk.  I really have no other choice because there is really no money to go on.  We just came back from California, which cost a lot of money.  We really had no time to rejuvenate.  Plus, my dad has to catch up on some of his work.  When he misses out on a week of work, it really takes a toll because he “backs” up.  When the work doesn’t go out, it is lost income.  When we go to California for a week, my dad not only has to do his regular work before we leave, but he has to do his extra work so that he can make up the work that he will be missing when we are gone.  So… my dad still has to get back on his feet from the last trip.  We can’t just pick up and leave so fast.  You know?

 I know we don’t have a lot of money and I sometimes wonder if it isn’t just better if we just leave things the way they are and let me just be the way that I am.  In this way, my family will no longer suffer because I know how very hard it is for my family with me being sick.  My family has given up so very much for me and I can never thank them enough.  However, I don’t want them to lose the business or house because of me.  It just isn’t fair to them.  I have been a burden to them enough.  They don’t deserve this.

Of course my dad won’t hear any of this.  My dad wants to get me any help that is out there.  Even though it is going to really be a hardship to go back to California, especially so soon, my father says “we really have no choice.” My dad is like “what r u going to do? It’s our only option. The only other option is death!” that’s the last thing my dad wants and if I should even hint at the word or mention giving up or anything… OFF WITH MY HEAD!!  I can’t blame him for being that way because no parent wants to lose their child, but I have caused enough problems for them.  I really don’t want to be a bother to them anymore.  It isn’t fair to them.

Another reason that I need to postpone the trip to California is because I have an appointment with my pain doctors in New York that cannot be rescheduled and I cannot miss them.  I already missed them for the past 2 months because of the trips to California and there is no way that the doctor is going to allow me to miss another month and still give me my drugs. After all, we aren’t talking about “everyday” drugs that I am taking. I am on very potent medications including methadone, morphine, nucynta, etc. The doctor can’t just call the pharmacist either and renew the prescription because the pharmacist needs to have the actual prescription on hand. Therefore, it is imperative that I keep the appointment because I need these medications. I have been fortunate for the past 2 months that he mailed me my prescriptions without me seeing him, but he was barely going to do it the last time. No way is he going to do another month. So, even though my life is basically at stake, I have no other choice because I need these drugs and have no other way of getting them.

Well… that appears to be everything that is going on.  As you can see… everything is chaotic right now.  I don’t know what is going to happen.  I guess I am just going to have to take each day one day at a time and hope for the “best.”

The doctors already told me that I better “not get stressed out.”  I can no longer convert energy and oxygen into my cells and organs.  Therefore, whenever I use up all the oxygen and energy that I have… that is it.  I can’t rejuvenate like a normal person or like I used to.  I easily get exhausted and therefore even talking can make me tire easily.  So… I really have to be careful not to exert any extra energy on “stupid” and unnecessary things because I don’t have that much oxygen and energy on hand as it is.  I need to save all that for trying to keep myself alive.

I am really scared because I know that I am not doing too well. I can feel my body giving out.  It is the “weirdest” thing.  My body is literally shutting down and I can feel it. It is so hard to explain and unless you are physically going through it, you probably wouldn’t understand it.  I keep having these “out of body” experiences and weird sensations and everything.  They are really freaky and everything.  But… despite everything… I still try to keep a positive attitude.

We are still trying to debate what to do about the transplant too.  Even though I do love my doctors in California, we don’t know if that is the best place to have the transplant.  The transplant doctors said that there are like only few hospitals that they would have the transplant at.  They are Stanford, Nebraska, Indiana, and Georgetown.  I really like California, but they only do like 1-2 a year and only have a 85% survival rate after 1 year.  Nebraska is the biggest center, but they have a 92% survival rate after 1 year.  Like my dad said… it is all in the numbers.   I also know that if I have it done in California, I would probably get the organs within 2 weeks because I am so ill and where I would fall out on the transplant list.  If I went someplace else, we don’t know how long it would be.  So… there are so many factors to think of and a lot of decisions still need to be made.  We better start moving because the process is in the “works.”

Thanks so much for everything that everyone has done for me.  I wouldn’t be here today if it wasn’t for the encouragement and support that I have been given by everyone.  I really get my strength from you. 

However, as you can see, we are really having a hard time with my disease.  It is a real financial burden to my family.  I am really deteriorating and it is a shame how money is such a crucial factor in this whole entire process of living. It really could basically “make” me or “break” me because without money, I can’t receive the treatment that would help me live.  Without the treatment, I will surely die.  I hate to be a “crier” because I never was one before.  It really hurts knowing that I have to “ask” and literally “beg” for money.  However, my life is at stake and without money… I can’t receive the treatment that can potentially save my life.  Therefore, I am hoping and asking if you can help me out in any way possible… whether it is by donating, spreading the word and bringing attention to my cause and website, saying a prayer, etc.  Any help that you can do would be much appreciated.  If you have any fundraising idea, it would be much appreciated.

Thanks again for all your help.  I can’t thank you enough.

Love always,

Fallon

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August 31, 2012

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Hey-

 How are you?  I finally made it back to NY.  I am having such a hard time seeing tonight, but I wanted to write and let you know that I made it back to New York safe and sound.  At least I am home now for a couple of weeks… well at least for the next 2-3 weeks.  It is so great to be home because I missed my mom and animals. Nothing feels as good as being “home!”

 I have no idea why I can’t see.  Last night I had a hard time with my eye too.  It felt like there was cuts all in my eye yesterday and we couldn’t see anything. I woke up that way.  However, tonight I woke up not being able to see.  We don’t know what to make of that.  I have had problems in the past with my eyes due to my disease and autonomic dysfunction because due to my diseases, I have severe “dry eyes.”  My eyes are so dry that it literally has caused my cornea to scar.  It is like having sand paper on my cornea and it has even caused my cornea to tear at times. 

 My eyes are really a mess from my illness because not only do I have the dry eyes problem that causes the scarring all over the cornea, but I have severe muscle deterioration in my eyes, which causes my eyes not to focus and such.  I have to wear very intensive prisms in my glasses in order to try to correct my vision.  In eyeglasses, prisms are used primarily for double vision, positional correction, or convergence correction.  Standard eyeglasses usually correct two types of eyesight errors, or a combination of both:  focal distance (near or farsightedness), or unusual curving of the cornea (astigmatism and cylinder).  However, Prism lenses are necessary to aid in getting the eyes to work together. One or both eyes tend to pull up, down, to the left, or to the right. The use of prism in the lenses tricks the brain into thinking the eyes are working together by shifting the image only slightly up, down, left, or right.  The prisms are very important to me because I have problems with my peripheral vision, as part of my eye has blind spots due to my neurological disease.  Since peripheral vision is most often affected, prisms are ground into the lenses to show an image outside the range of sight, simply by placing the prisms within the viewer’s sighted area. This alerts them to something, which would normally not be seen, and they can then turn to observe it more closely, thereby avoiding running into people or objects simply from lack of seeing them.

 However, prisms are extremely costly.  It makes my glasses incredibly expensive and therefore, it is nothing for my lenses alone to cost $1000 easy.  So… it really is a big deal when it is time to get a new pair of glasses because they come out to costing so much money.  After all, I can’t get just one pair of glasses either because you always have to have a spare pair in case there is an emergency or they break or get lost.  I also need sunglasses because I can’t go into the sun without them due to my extreme hypersensivity.

 There can be various reasons why I can’t see.  We don’t know if perhaps it is my illness acting up and it is starting up the autonomic dysfunction, if perhaps I did something to the cornea since I do have the severe dry eyes such as ripping it or scarring it even more, if the tumor is causing problems, or if there is something else going on with my eye. All I know is that I can’t see!  Not only that, but there feels like there is a lot of pressure in my eye, and there feels like a film/fog in it as well.  I have tried to put lubricating drops and steroids in my eye, but nothing is helping.  Dad is scared too, especially since I haven’t been feeling well at all and my blood pressure has been so very low.  I am also worried that this might be an indication of another underlying problem such as with my heart or something else because I do suffer from severe low blood pressure, have been complaining about my heart feeling extremely funny, having really bad bloods, etc., which all can cause problems and show warning signs in the eyes.  I have also been told recently by the doctors that they are worried about my jugular veins collapsing and such because they are not very prominent or as prominent as they should be anymore and therefore, perhaps something else is going on such as maybe I am having a stroke or something. I am so very sick and with me… anything is possible. 

 But… I don’t want to read into anything because I don’t want to be a hypochondriac.  I am supposed to see a neuro-opthamologist… but of course that is when I go back to Cali. Dad wants me to call the doc in the morning, but I don’t know what that is going to do.  First of all it is a Saturday and no one is really in on a Saturday.  Second of all… I need to see the neuro-opthamologist and there aren’t really a lot of them.

 Anyway, what a day I’ve had today. To begin with, I was weighed when I got home, which was something I was trying to avoid all throughout the week. Whenever the doc tried to weigh me, I was like “I was just weighed… My weight was blah blah blah!”  Luckily, they took my word for my weight even though my dad thought I was weighing less. I didn’t want to know because he was probably right. When I went to get dressed this morning, I put on my belt and I was like “Uh Oh!” my belt didn’t fit me anymore because it was way too big. It was soooo obvious and I couldn’t believe how big it was… Especially since it was only 1 week. I knew I was screwed and my dad was going to have my head.

 My dad started with me this morning telling me how “I don’t eat right” and how I’m “playing with fire.” My dad was after me all day then to eat but between not feeling well and traveling… I didn’t really eat. I really don’t like to eat when I am out because I cannot keep down food due to my gastroparesis.  I end up vomiting everything I eat and therefore, I am so embarrassed.  So, it is just better off not eating so I don’t have that problem. 

 Anyway, when I got home I was weighed and even though it was nighttime and I was wearing sweatshirts and everything (all things that should’ve made a huge difference and made me heavier), I did lose a lot of weight. My parents ended up freaking out, and I really can’t blame them.  So, obviously besides freaking out and giving me the big lectures, they definitely made sure I ate tonight. I never stopped hearing the end of it.

 It is very important for me not to lose weight because not only do I weigh so little, as I barely weigh 70 lbs., but once I lose the weight, I’ll never really gain it back.  It’s literally impossible.   That is partly why my parents freak out so much when I lose weight. That’s also why my dad hates traveling because he knows that every time we travel, I lose weight because I definitely don’t eat like I should and I definitely can’t afford to lose even an ounce. He tells my brother and everyone else that I really scare him because for him, if he doesn’t eat or anything… He can afford to not eat and lose an ounce. However, for me… He tells people that I cant afford not to eat at all. He says I can’t afford to lose a single ounce because it is a matter of life and death with me. It is literally a matter of life and death because I honestly don’t have room to lose.

 Even the docs are freaked out about this and REALLY REALLY REALLY worried about me losing… Especially when my BMI is so very low and deathly low too. They said if I was a MALE I would definitely b dead. They said that there would be no way I’d be alive because a male can’t live under 13 by any means. Luckily, a female can live til 12, so it leaves me a little more wiggle room and I’m able to live because my BMI is 12.6 … At least it was at the weight I TOLD the docs. With me being the actual weight that I am now… There is no way I am even that high. My BMI is definitely even lower. So if I was knocking on death’s door before… U can imagine what I really am at my true value. No wonder I’m feeling do horrible and  my heart feels like its giving out… Right??  So scared.

 What a trip to the airport we had.  We had a very early flight this morning and every time I closed my eyes in the car, my dad always makes a wrong turn. So… He kept getting lost.  He was having a fit that we were going to miss the plane and everything because we were “late!” Meanwhile we had plenty of time. He was feeling for no reason. I also told him how this was so not my fault. He was the driver and it wasn’t my fault he couldn’t read signs. Plus… I was ready and waiting for him in the room. Usually he blames me hit getting out of the room so late, but it was his fault definitely this time. I was all ready and waiting for him. I was sitting on the bed waiting for him to finish circling the room checking and rechecking things to make sure we didn’t leave anything, as well as waiting for him to finish up in the bathroom. I was not taking the blame this time whatsoever.

 We dropped the rental off and instead of walking to the airport and terminals because it was kinda a walk and we had to take the “tram” and everything, this lady that worked for HERTZ said she would give us a rude in the car over to the terminal so we wouldn’t have to walk. It wasn’t that far, but it would b much easier. Of course my dad hates when people dies favors for us so he started Ti tell her “no” when she was like “u listen here… When someone nice offers to do something for u… U take then up on it. There aren’t many nice people in the world, so when people wanna do something nice to help u out… U take them up on it!” thankfully after my dad was told that … We took her up on the offer and she took us to the terminal. It was definitely better than walking… Especially when I wasn’t feeling well at all. Some people are NICE in the world after all. Lol. Actually I think that people in Cali happen to be so much nicer than the people in NY.  The doctors are so much better with their bedside manners and help you out more and so are the people.  For example, when I got to the terminal, the skycap guys (the guys who get the baggage) he recognized me from.  Last time and of course was talking to me. Even though there are always so many lines, luckily I never have to wait on them because of my illness. So thankfully I don’t have to because if I did… It would really make me late.

 Guess what though?? When we were on the plane, we almost had to make a emergency landing. LITERALLY. I am not kidding. When we were going to Chicago, we almost had to make an emergency landing and it wasn’t because of me. We thought for sure something was going to happen to me and meanwhile it wasn’t because of me that we were going to have to land. All of a sudden we heard over the loudspeaker “are there any doctors on the plane?” We were sitting next to one, but he was a dermatologist.

 We asked him if he was going to volunteer but he said that he has a policy of waiting a full minute before volunteering and jumping in to help. So he looked at his watch and started to count down from a minute. Luckily during that minute other doctors showed up to help, so this dermatologist didn’t have to do anything.

 The guy fainted and needed oxygen and stuff. My dad and I thought for sure we were going to have to have an emergency landing. But… Luckily… We didn’t. They gave him oxygen and monitored him throughout the remainder of the trip. Apparently it is a very common thing for people to FAINT on a plane because when I was talking to the flight attendant afterwards, he said it was something “common” and something  they were “used to happening!”

 It didn’t get better though. When we landed and went to baggage, a guy had a heart attack and was getting worked on right next to me… Literally. It is like someone is trying to tell me something. Lol.

 Gosh… I have so much to think about now.  I am supposed to be going back to California in 3 weeks, but of course that depends on the money issue. I desperately need to get back, but we really can’t afford it. When I go back I will be admitted into the hospital and I will be given “tubes” into my intestines. Even though we know that my entire GI system (esophagus, stomach, small intestine, and large intestine) is completely dead, we are hoping perhaps we might find just one little piece that MIGHT be viable.  The doctors are thinking that if they go low enough into the small intestine, they might find that little piece. So they are going to give me a tube that is going to go into my nose and bypass my esophagus, stomach, beginning of the small intestine, and end up in the end of the small intestine.  The doctors don’t think it is going to work, as I have less than a 20% chance of it working, but it is worth a shot.  I am desperately running out of time and something has to be done because I am rapidly deteriorating.  If they do find a little piece that is viable and able to feed me through that, I will be able to possibly put off the transplant for a while and I will never eat or drink again.  I will then be operated on and the tube will be surgically implanted so that it will come out of my abdomen instead of going through my nose and passing downward through my esophagus and stomach.

 Another procedure that will be done will be that they will try to treat my underlying neurological disease as well, which is extremely painful.  They will be giving me snail venom and/or a very intensive ketamine coma in the ICU.  They have treatments there that they have pioneered and cannot be found anyplace else.  So.. hopefully they might have something that might help me because I am suffering so much. I suffer every single second of the day and I never get a moments rest.

 In addition, when I go down in three weeks, they are going to be working on getting the transplant on its way. To be considered as a candidate for intestinal transplantation, I have to undergo a thorough transplant evaluation. I need blood tests, heart tests, abdominal ultrasounds, radiological tests looking at the length and function of the intestine, lung function tests, physical exams, etc.  I also need consultations with the transplant team members including dietician, psychologist, financial coordinator, specialists, etc. 

 I desperately need it ASAP and therefore, there is so much work that goes into getting the transplant.  So… since so much needs to be done, they were going to start doing it when I came the next time, as I have to undergo many tests, procedures, consultations, etc.  The transplant is extremely risky and dangerous, so if we can put it off… it would be great.  However, if the transplant is successful, then it would really be awesome because I will be able to eat whatever I want.  So, in a way it would be much better than having the tube implanted into my intestines because if get the tube into my intestines, then I won’t ever eat again, which would leave me to be always “hungry.”  Feeling “full” and “satisfied” isn’t just because you are “feeding” yourself.  It is because your stomach feels food and you taste it.  Since my stomach is never going to feel food again and I won’t taste it ever again, I won’t ever feel that feeling again. As a result, I will always be hungry and my stomach will always rumble with hunger.  It will also stink because when I go out with friends I will have to watch other people eat while I just sit there, which would make me very uncomfortable and probably even more hungry as I watch people eat and I can’t.  The doctors said there are tricks so I don’t smell the food, but I am sure it won’t be pleasant for people either to have me just “watch” them eat. 

 I just want to be ‘normal’ and that will only probably be if I have that risky transplant surgery.  However, only 8 hospitals in the country do it.  I am having a very hard time now decided on what hospital to do it even though in the end, it is the insurance company’s decision.  Even though the insurance company probably will pay for the transplant, it probably will not pay for all of it.  Therefore, it is imperative that I raise money for this operation because if I don’t, I don’t know how I am going to afford to be able to have it.  It is going to be extremely expensive because we are talking about a HUGE transplant.  Then, I also need to raise money because I will have to stay in the hospital and relocate for about 3 months.  That means that dad won’t really be able to work during that time either, which means no income to the family.  This poses additional problems because we don’t know how on earth the business is going to survive or how we are going to pay our bills. But we do know that if nothing is done, I am definitely going to die.

 The operation is really long and intense.  The operation will take between 10-15 hours to complete. After the organs are removed and the new organs are placed into me, an ileostomy is created and the skin is closed. An ostomy is an opening from inside the abdomen to the outside of the abdomen and is used for elimination of stool, as well as monitoring the new intestine for rejection. Depending on the type of intestinal failure, some ostomies are temporary and others are not. If the ostomy is temporary and the patient remains stable, the bowel can be reconnected within three to six months after the initial transplant.  After surgery, I will be taken directly to the intensive care unit (ICU). An average hospital stay is between one and two months and may be longer. Once patients leave the ICU, they move to the solid organ transplant unit (SOTU, and once on these units, activity and diet are advanced as quickly as possible. Most patients require Total Parenteral Nutrition (TPN) for a short period of time as they advance to oral feedings. They already told me not to expect to gain weight in the first 6 weeks because all the food will go into “healing” the body.

 I can get many complications from this surgery. Not only can I end up dying or rejecting the organs, but I can also have surgical complications.  These can include wound infections, perforation of the intestine, abdominal abscesses, anastomotic leaks (leaking from the blood vessel connections), and biliary leaks (leaking from the bile ducts).  The most common medical complications after transplant are hypertension, rejection of the new organs, infection, kidney dysfunction, and diabetes.  Of course since I am so very sick and weigh so little, I am at greater risk of not coming off the table and not healing.  They are even very worried that I may not even be strong enough to make it through the surgery. 

 After speaking with the transplant team in California, they said they would have the transplant only there, Nebraska, Indiana, or in Georgetown.  So, we really need to think where the best place is that I should have it.  I really love California, but I don’t know if that is necessarily the BEST place for me.  I love the hospital and I love the doctors, but like I said before, I don’t know if it is the best place because they only do 1-2 a year.  However, my whole entire ‘team’ of doctors are there including the doctors for the underlying neurological disease, which I think might be important since my disease spreads through surgery and trauma. Having this transplant and such is going to be very traumatic and is probably going to spread it like crazy and therefore, it is important to have people who can control the underlying disease and help me in that aspect too.  At least that is what I think.

 However, I do also know that it is better too if I go someplace where they do a lot of the transplants such as Nebraska since it is so dangerous, risky, and radical. It brings about the highest chance of rejection of all transplants. Nebraska has one of the biggest transplant centers for my transplant, as they did about 12 last year. However, they were the first of the hospitals to do them. 

 Last year Nebraska had 12 candidates with 4 being adults. After 1 year, the survival rate was only 92% (for the adults). However, last year California had 1 transplant and after one year, he/she is still alive (100% survival rate).   It is all in the numbers.  Plus… it all comes down to in the end also where the insurance will send me as well. But hopefully they will send me where  I pick.

 I like Nebraska because it is a bigger center and they did more.  But… I like Cali because I love the docs and I love the hospital.  Plus.. I probably would get the organs sooner (don’t know for sure on that. I do know that where I fall on the list for that in Cali is about a 1-2 week wait because I am so sick).  I also know that they are pioneering stuff there for my underlying neurological disease and therefore they can treat that as well while I am there, so they can be on top of that at the same time.  So… since I am in so much pain from the underlying neurological disease and it spreads… especially through surgery…. at least they can help ‘contain’ it.

 Since this is such a MAJOR decision, whenever I find out things, I am sure I will let you know. If you ever have any advice or an opinion, please don’t hesitate to contact me and let me know it.  I would appreciate any advice that anyone can give me. I am just so confused. My head is like spinning. I am so scared.  Never been so scared before.

 Anyway, even though I spent basically all the time at the hospital, I made sure that I made a stop at the airport to pick up bread for my brother before I boarded the plane to come home because I knew how much my brother wanted it.  He absolutely  LOVES the bread from California, as it is so yummy and there is nothing like it.  I bought him two loaves because he loves it so much.  But guess what?  When my dad went to get the bread, he kept knocked  down basically all the loaves that were on the shelf.  Every time he picked one up and put it on the shelf… they just continued to fall down.  He was so pissed.  When I gave my brother the bread, I told him, “Hopefully this will hold u off for another 3 weeks or so til I come back to Cali!”

 However u know what?? Even though my brother did love the bread that I bought him from the airport, you know what he said to me?? He was like “where is the bread shaped in the lobster?” Of course he meant the crab bread, but I had to explain to him that I didn’t go to the bread factory and he was lucky he got what he got because it was picked up at the airport (so if course they only had a limited supply). Even though he did understand, you could tell that he was definitely disappointed. Big whoop! I’m sure that even though it wasn’t in the shape of a “crab” like usual, I’m sure that it definitely tasted that same. But he was definitely upset.  So I promised him that when I go back the next time… I’ll get him the crab bread.

Guess what though?? Guess what happened?? When we were on the plane, we almost had to make a emergency landing. LITERALLY. I am not kidding. When we were going to Chicago, we almost had to make an emergency landing and it wasn’t because of me. We thought for sure something was going to happen to me and meanwhile it wasn’t because of me that we were going to have to land. All of a sudden we heard over the loudspeaker “are there any doctors on the plane?” we were sitting next to one, but he was a dermatologist.

We asked him if he was going to volunteer but he said that he has a policy of waiting a full minute before volunteering and jumping in to help. So he looked at his watch and started to count down from a minute. Luckily during that minute other doctors showed up to help, so this dermatologist didn’t have to do anything.

The guy fainted and needed oxygen and stuff. My dad and I thought for sure we were going to have to have an emergency landing. But… Luckily… We didn’t. They gave him oxygen and monitored him throughout the remainder of the trip. Apparently it is a very common thing for people to FAINT on a plane because when I was talking to the flight attendant afterwards, he said it was something “common” and something  they were “used to happening!”

It didn’t get better though. When we landed and went to baggage, a guy had a heart attack and was getting worked on right next to me… Literally. It is like someone is trying to tell me something. Lol.

Well… gonna get going.  I am going to rest.  Had a big day today, as traveling is definitely not easy. I still have to go to the hospital as soon as I can so I can have the rectal tube put into me so that I can relieve the pressure in my abdomen.  My organs are shutting down because of all the gas buildup in it due to my failed GI system.  I know how urgent and important it is for that to happen, but I kinda don’t really want to do it.  It sounds really painful, embarrassing, etc.  Plus, I really don’t want to go to the hospital right now either.  I hate hospitals.  You would think that with all that I have been though that I would be “used” to hospitals.  However, it has only went the other way.  I have become “phobic” to hospitals and I hate to be there.  But… I know how imperative it is that I have this done because not only am I suffering from the pain of the organs shutting down and all this pressure, but I can’t afford to have my organs shut down any more than they already are right now.  In addition, it is also putting pressure on my spine and since my bones are so very weak and paper-thin as they are, it is very possible that something can happen to that as well and that is the last thing that I need because the spine is just so very important.  As it is, the doctors are always worried that I am going to get a life-threatening fracture.

Well… thanks again for all your support and encouragement.  If you have any ideas on raising funds or anything, please let me know because time is of the essence, which is something that I don’t have a lot of.  I desperately need treatment and without help from others, I fear that it won’t be able to happen.  I desperately need to get back to California in 3 weeks and it is important that I get HELP in order for that to happen because it won’t happen on my own. 

Thanks again for all your support. Please help me whether it is by donating, saying a prayer, and/or spreading the word and bringing attention to my website and me!!

Love always,

Fallon

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