FALLON MIRSKY

Please help SAVE MY LIFE!

August 31, 2012

on September 1, 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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