FALLON MIRSKY

Please help SAVE MY LIFE!

December 27, 2012

ImageHey-

Well just wanted to keep you up-to-date on all that is happening since things are happening so frequently lately and everything is so “bad” lately that we never know from one minute what is going to happen or what the next step is actually going to be. We never know from one minute to the next if I am going to be “here” or not because with everything being the way that it is… I am basically walking a tightrope between life and death, and that rope is ready to snap.  I am trying to hang on, but to be honest… it is getting harder and harder.

I am also writing because I have another doctor’s appointment in the morning.  I have to go for my bloods and if things continue to worsen, I am really afraid that I am going to be hospitalized. They really wanted to put me into the hospital on this past Monday, but I refused to go.  I really wanted to remain at home because I hate hospitals and because it was also Christmas. I also wanted to try one more time to see if taking added medication can possibly raise my bloods, but I know deep down that it probably is a worthless attempt.  Even my dad says it is probably “inevitable” that I am going to end up in the hospital.

Even though I am so very sick and I know that the BEST place for me is probably to be in the hospital, I really don’t want to be there.  Therefore, I am hoping that tomorrow won’t have to end up in going to the hospital.  That is also the reason why I didn’t go on Monday.  There are so many reasons why I didn’t go to the hospital.  I hate hospitals for one reason.  Even though I have been hospitalized so many times already, you would think that I would be so “used” to the hospital.  The fact is that the more that I am hospitalized, the more phobic I am getting.  I am petrified of the hospital and therefore it really scares me to go.

A second reason is that I am extremely fragile and have no immune system. The hospital isn’t the best place for me because there are so many chances of getting sicker in a hospital. The hospital is the highest place to catch an infection because of all the illnesses that loom there.  Since I can’t fight anything, I really can’t chance catching anything because I will really catch everything there is.  Plus, once I catch it… it really is a big deal because due to my situation, everything is magnified. A simple cold is like getting the FLU to me and therefore a simple cold can easily kill me.  Not to mention that when I do get sick, there aren’t a lot of medications that I can take to cure the problem due to all the other meds that I take.  I take over 50 pills a day and due to all the medications that I take, there are so many interactions that it really limits me as to what I can take.  Doctors have such a hard time when I get sick finding anything that they can put me on and they really get scared because everything interacts with everything.

In addition, I can’t be treated like a regular patient.  My disease and condition is very complicated and complex and to be honest… not a lot of doctors or nurses have seen patients like me around.  That is why when I go to the hospital, it is like I am on “show.”  I have like everyone coming into my room when I go to the hospital because I am like a “once in lifetime” case and everyone wants to see it.  When I went to California, I went to a top hospital and I literally had all the doctors “running” all over the hospital with their feet not even touching the ground.  They even said that they “saw things that they never saw before” and they were at a top hospital in the country and used to seeing rare and abnormal things.

As a result, I can’t be treated like the typical patient.  I need around the clock care and I can’t be touched like the typical patient either.  I am constantly taking medication and people have to be extremely careful touching me because I am so much in pain.  I am extremely hypersensitive that the slightest innocuous touch can send me running for the hills.  I can’t even sleep or have a blanket on me and therefore, nurses have to be extremely careful touching me.  I can’t even tolerate IVs because the needles being put in me are like having knives in me and the fluid being passed through the IV lines is like glass being put in my veins.  That is why when I go to the hospital, they literally can’t start the IV until I am “knocked” out and they have to literally put the IV on as slow as possible… so it is barely working.  I also need medication that is unheard about and very few hospitals are capable of doing, as only certain hospitals are capable of giving ketamine and such, which is one of the very few medications that I need and work.

So… with all things considered…. I really hate going to the hospital because with everything happening and how difficult I am to handle, I don’t have the energy to put up with all this. Nurses and doctors think that they are doing the “right” thing because that is how they would treat a “normal” patient, but like I said before… I can’t be treated like a normal patient.  I am so weak and sick that I honestly can’t be bothered with constantly putting up with them touching me the wrong way or explaining to them how to deal with me.  It is just too exhausting.  You know what I mean?  It is at the point I just want to be left alone.

Finally, I can’t just go to any hospital either. Due to my complex medical condition, I really need to go to a hospital that is able to handle me.  There really are only 6 hospitals in the country that are able to do this because they understand and know about my disease.  There are only 6 hospitals that are even able to do the transplant that I need, which is getting a new stomach, small and large intestine, pancreas, and liver.  However, those two hospitals that I need to go to are not exactly “local” and since I can’t get to California or Indiana right now… it can really “hurt” me to go to a hospital that doesn’t quite know how to handle my condition or is knowledgeable or treating me.  However, when there is an “emergency,” of course all bets are off where you go.  When there is an emergency… you go anywhere. But… we are just hoping to be able to hold off on that and be able to hold out until we leave on January 20th to Indiana since that is the best place for me.

I can’t just go to any hospital.  That was proven to dad today when we went to the doctor because we found out that I wouldn’t be able to get my needs met at every single hospital.  I was already told in the past from certain hospitals that they wouldn’t be able to handle me and if I were to go there, I would have to be transferred.  However, when I went to the doctor today, I was told that not all places could give me the ketamine treatment as well that I would need.  Ketamine is one of the few drugs that help and is the only drug that would really help me if my disease were really exacerbated.  When I went to California and had surgery, I was not able to walk.  The doctors immediately put me into a ketamine coma and thankfully, at least I was able to go back to walking… well actually walking on crutches (but that was how I was before because I can’t walk on my own).  But without that ketamine, I would not be back to walking with the crutches.  That ketamine is like my “miracle” drug… so I need to be in a place that can administer it in case I need it.  It is a very dangerous drug and therefore, not all hospitals can give it to me.

Yet, my bloods are continuing to worsen and it is at the point that I can have cardiac arrest and die at any minute.  Like I said before, when I went for my bloods on this past Monday, the doctors wanted to put me into the hospital then because my bloods came back so very low.  At this current level, my heart can easily have an arrhythmia or even cardiac arrest.  Yet, due to the above reasons as well as because of it being the holidays, I didn’t want to go.  I know that if I went to the hospital, I probably wouldn’t be coming home so fast because of how “sick” I really am.  I  really don’t want to live whatever time I have left in the hospital and I didn’t want to spend the holidays in the hospital either.  So, I was hoping that I would be able to stay out.

I have the bloods in the morning and hopefully I will be able to continue to stay out of the hospital, but who knows what will happen?  I just hope so because I really don’t want to spend New Years in the hospital and I know that if I end up going to the hospital, I probably will end up in the hospital then too.  I just know that unless a miracle happens soon, this will be my last New Years to celebrate.  I don’t want to spend it in the hospital.

I also went to the doctor this morning.  I had the doctor at 6:30 in the morning.  Can you believe how early I had an appointment in Manhattan?  But… things have gotten so bad that the doctor was meeting me.  I can barely swallow.  I can’t swallow anything including food, pills, etc.  I was only able to swallow egg whites before, but even that is difficult nowadays.  I am also passing more mucous than ever.  Not only is it worse, but I am also passing more blood as well.  It seems that the harder I try to keep hydrated and the harder I try to take my meds to raise my bloods, the worse the mucous and the worse the blood.  Therefore, I wouldn’t be surprised if my bloods are continuing to worsen because we know that the mucous and blood is contributing to making my bloods values to fall.  I am also getting the worse stomach pains to the point where I am debilitated from them.  I literally have to crawl in a ball and there is nothing that can be done to alleviate them.   So I was hoping that perhaps my local GI doc in Manhattan could possibly do something to help me in the meantime because Indiana on January 20th is still sometime away.

When I went to the GI doctor, he wanted to hospitalize me.  Of course I didn’t want that though.  He also wants to put some ports in me so that I will have access to TPN, as well as a port for bloods and medications.  This way I won’t have to be “stuck” over and over again and I will also be able to get nutrients and other things that I wasn’t able to get before.  He thought that perhaps this could buy me some time.  However, it isn’t an “easy” answer because any surgery and especially a port (an artificial device) can really wreak havoc in my body.

Any sought of trauma to my body like surgery can stir up my disease since my disease spreads and worsens through trauma.  Any sign of trauma or such will of course also exacerbate it.  I am so fragile and weak that we don’t even know if it is “smart” to even do this because we have to be careful what we do to me because I don’t have any reserves on me.  I will have a difficult time recovering in whatever we do, especially since I only weigh like 70 lbs., and therefore, we don’t want to waste it on unnecessary operations.  We need to save whatever reserves and energy for the bigger and more important operations like the transplant.  So… We aren’t sure if the port is the “right” thing to do because like I said before, I have the upcoming transplant, which is very BIG and risky.  It is the most dangerous and radical surgery you can have.  It runs the highest rejection rate of all transplants.  So I am of course going to need all the energy to recover from that.  I can’t be further weakened from littler and unnecessary surgeries.  You know?

However, the doctor was thinking that if I could possibly get the port, I would be able to get some TPN or some meds to also help raise my bloods and such. Due to my extreme paralyzed GI system and gastroparesis, I can’t absorb anything and therefore, my whole entire body is failing.  If I could get the port, the thinking would be that I would be able to be given some TPN and some other meds, which I would be able to absorb since I can’t absorb it in other ways.

I can’t get TPN any other way, so the doctor was thinking that I would be able to also receive that too.  He was hoping that it would make me a bit stronger as well because I am definitely going to need to be as strong as can be for the operation.  I have had TPN before, but it had to be removed due to all the side effects that had occurred.  The TPN in the past was given through a needle and catheter placed in my arm.  TPN may include a combination of sugar and carbohydrates (for energy), proteins (for muscle strength), lipids (fat), electrolytes, and trace elements and therefore, the doctor was hoping that it would really benefit me and help my situation.  But, even though I only weigh 70 lbs., it wouldn’t really make me “fat” or solve the problem of gaining weight.  It wouldn’t really make the transplant disappear.  Even though TPN often includes lipids, it will not make you fat. Everyone needs calories, protein, and fat, in addition to other substances, to stay healthy.

However, I had to have the TPN removed in the past because of the complications that arose.  TPN is very dangerous and it can’t be used over the long-term.  I was getting severe stomach pains, reaction from the exacerbation of my painful neurological condition because it was something “foreign” in my body, and I was showing signs of infection.  Every time we tried to restart the TPN, my body would just reject it because not only would it cause me tremendous pain, but the sites also would become tender, warm, red, swollen, etc.

So, the doctor was hoping that the port would be a good thing to have prior to the transplant.  A Mediport is an internally installed needle accessed device that is typically used for patients that need long term IV access (like cancer chemotherapy, antibiotics, parenteral nutrition).  It is surgically placed, usually by creating a false pocket somewhere in the upper chest wall (under the skin on top of the ribs, though they can literally be placed anywhere [eg abdomen, thigh, etc.]). An internal tube is then attached to a nipple on the device, with the other end of the tube then sewn into a nearby large vein (usually one of the subclavians).  It would be awesome that it would really limit the number of times I would have to be pricked.  Yet, I would only be able to get SOME of my meds through this and therefore, I would still have the problem of swallowing.

The doctor wanted me to have it done ASAP, but it would entail also being in the hospital for the operation. I would also have to be in the hospital afterwards for a while because we don’t know how I would react to the operation since I am so high-risk. Also, I would need time to get adjusted to the TPN and such because I can’t just be started on it.  Since I am so malnourished and fragile, I will most likely have a condition called “refeeding” syndrome that the doctors will have to watch out for.  Refeeding syndrome can be defined as the potentially fatal shifts in fluids and electrolytes that may occur in malnourished patients receiving artificial refeeding (whether enterally or parenterally). These shifts result from hormonal and metabolic changes and may cause serious clinical complications. Refeeding syndrome can be fatal if not recognized and treated properly. Therefore, it  needs to be carefully monitored.

The doctor really wants me to have it done ASAP because time is of the essence, especially when I am deteriorating so rapidly.  Plus, I am leaving for Indiana on January and therefore, I need to have it done and be able to travel by January 20th.  The doctor said that I can go and meet with the surgeon to have it “scheduled” or he can just have me admitted to the hospital today and then we can work with the surgeon from here.  Of course my dad wanted me admitted immediately because my dad is so very scared of something happening to me.  Even the doctor said the future doesn’t look too “good” for me.  But… I of course didn’t want to be admitted into the hospital so quickly and I said I would meet with the surgeon on the outside.  I also wanted to discuss all this with the transplant team to make sure that this was the wisest decision to make and should be done prior to the transplant.  As I said before, I am really weak and didn’t want to waste my energy and reserves on surgery that was not going to “help” or further going to weaken me.  So I went home to make plans to contact the surgeon privately after speaking with the transplant team if they did consent to it.  However, of course I would go to the hospital immediately and have it done if things warranted it beforehand.

I did speak to the transplant team and I am still waiting to hear a finalized decision before I make a final decision as to what is going to happen.  At the initial thought, they weren’t too keen up front about it because they were thinking that maybe a central line would be better.  I am supposed to be talking to the head doctor on Friday, so we will see what the end  result will be.  The doctors also didn’t really want to start anything now before I see them because they didn’t want me further weakened.  They rather get me to Indiana and do everything there before I am weakened here and have to then first travel.

In addition, I am also very worried about what is going to happen financially during the transplant.  I don’t know how on earth I am going to afford all this.  That is part of the reason as well that I don’t want to go to the hospital now too.  Every time I do something, I see dollar signs.  I know we can’t afford anything and I know that unless I receive support from other people, I won’t be able to receive the lifesaving treatment that I need.  I found out that even with the insurance covering the transplant, it is really just a needle in the haystack.  Like I said before… even though the insurance company will pay for the multimillion-dollar operation, it really doesn’t solve my major problem.  I really need so much help in order for this to happen.

Even though the operation is technically covered, it doesn’t mean that everything that they do is covered as well. Each day in the hospital will cost me $100 at the very least and since I will be in the hospital for about 2 months, it will be like 6000 at the very least just for being in the hospital.  I need to have scans every day, as well as tests, and the copayments for each of them is at least $100 per day.  I don’t know how on earth I am going to pay for this.  That is just one more reason why I am hesitant to be hospitalized now because I know that if I am and they run tests, I am going to have to pay these costly copayments as well.  I can’t afford them when I have the transplant, how am I going to afford them now too?

The bills are racking up so much and to be honest… it is really taking a HUGE toll on me.  I can’t do it anymore.  Mom and dad can’t pay for them anymore and they have fallen on my shoulders.  I can’t blame them for not being able to pay for them anymore because they are so astronomical, but it just stinks that everything revolves around the dollar.  You know?  I can’t receive treatment or testing because of that very factor.  I didn’t go to the hospital because I already owe so much money and I didn’t want to owe more money.  Each time I go to the hospital, I have to pay a copayment (even though I am covered) and then even though I am “covered” and I am in the ER or even an inpatient… I am still responsible for all the testing that they run.  Even though I am admitted or in the ER, I still have copayments for EVERYTHING that they do including all tests, scans, etc.  So… not only would I have like the $200 copayment for going to the ER, but I would have to be bothered with the copayments of all the scans that they would then have to run on me when I was there… each scan is like a $100 copayment… and they will obviously add up VERY quickly.  Not to mention if I needed any procedures such as endoscopies or anything.  The copayments for them are even higher.  So.. I really didn’t want to be bombarded with those costs, especially when I probably will only have to have them redone when I go to Indiana when I go in January.

Besides the copayments, I will have to worry about the traveling expenses.  Like I said in past blogs, I have to worry about getting to the transplant since I have to take a private plane.  Usually they want all their patients living within 4 hours vicinity.  However, since I can’t because of dad’s business and how we really can’t afford it because dad has to work and such (you can even be on the list for a long time and we can’t afford to not have an income during that time.  As it is we don’t know how we are going to not have dad work after the transplant because I will have to be in Indiana for like 2 or so months), the doctors have said that as long as we can get to the hospital via private plane and have every detail set up when We meet with them… then they will allow it.  They just want everything set up because they don’t want us fiddling with things and setting everything up last minute because these are organs that we are playing around with and we can’t afford for them to go wasted.  I can’t blame them, but it gives me so little time to figure things out and I don’t even know how I am going to afford all this especially when taking a private plane is going to cost me so much money… $12,000-14,000.  But like I said before… I don’t know how we can afford not to do this because we can’t afford to relocate before the transplant.

I also have to worry about the other funds for my treatment including my copayments for the doctors, medications, hospital, etc.  Even though they might be covered, I still have copayments.  As it is, I already pay over $25,000 per year in copayments and that is with the insurance paying.  I also take medications and see doctors that the insurance doesn’t pay for.  I don’t know how I am going to be able to afford all this.  I also have to worry about the living expenses and traveling expenses post-transplant as well because I will have to live there for a while and my dad won’t be able to work.  That means that the business won’t be able to function really because without him being there… there is really no one to work.  I don’t know how on earth the business is going to survive and I don’t know how on earth we are going to manage to pay our bills when we can’t even pay them now and he is working.  I desperately need help.

With everything happening, I am wondering if the transplant is the best option. I know it is my only option, but I am wondering if it is worth putting my family through all this.  After all, I am really asking them to suffer and they have suffered enough.  I really don’t want to hurt them anymore than I already have.  They have given up so much for me already and I don’t want to hurt them even more.  As it is, they don’t do anything.  We don’t go out to eat, we haven’t been on a family vacation in like 8 years, we don’t buy anything “nice”, they work 7 days a week (even holidays), etc.  They have literally given their lives up for me and I am very thankful and appreciative for it.  But I really wonder if it just isn’t enough already.  With everything happening, this disease and illness has really taken a huge toll on my family… physically, emotionally, and financially.  I really don’t want to see them suffer anymore.  If they would lose the house or anything, I would never forgive myself.  My parents are at the time in their lives where they should be “enjoying” themselves.  Instead, they are working like workaholics and trying to make ends meet.  They are no youngsters and I am so worried that something is even going to happen to them.  My mom has MS and my dad is a heart attack waiting to happen.  Yet… they continue to work around the clock and continue to push themselves so that I can try to get whatever treatment we can afford.

I know that they want me to get well so badly and would want me to get all the treatment that I could get.  I know that it kills them that they can’t afford all the necessary treatment that I need to save my life.  I know it kills them to watch their daughter deteriorate and die and to know that no matter what they do… nothing that they can do can really save my life.  I just wish I could make their lives better because they don’t deserve all this.  They really have given up way too much than I could have ever asked.  I just don’t know if it is worth going through the transplant and risking them suffering more.

Well… there is so much that has to be done and so much that is happening.  I just hope that I live to see the New Year.  Who even knows if that will happen at this point. Sometimes I wonder if it is even worth it because of everything that is happening.  Sometimes I wonder if it just wouldn’t be better if I just “went” because I am suffering so much.  Plus, I wouldn’t be such a burden on everyone’s shoulders.  Dad of course doesn’t want me to go and says that I am no way a “burden,” but I know that I am.  It doesn’t take an EINSTEIN to see that.  I am suffering so very much… and I don’t honestly know how much I can take anymore.  The double morphine barely helps.  I am trying to hang in there, but it is extremely difficult.  I just can’t do it.  I just want to be free from all this pain and suffering already. I just lie around and do nothing nowadays.  I can barely get off the couch.  I went from a world that was full of so much life and promise to a world of nothing.  I don’t even want to be bothered with nothing… which is really out of the normal for me.  For me not to care about nothing… not even school… you know things aren’t good for me.

The transplant is going to be so difficult on me.  The recovery is going to be crazy… especially if I end up getting a pediatric organ. Since I am so small, I have the possibility of getting an adult or pediatric.  The problem is that I am on such high doses of opioids and narcotics because of the current pain and neurological condition.  The new organs won’t have them in their system and therefore they won’t be able to tolerate them… especially the high doses that I am currently living on at the current moment.  Therefore, since I am used to these high doses for the pain… it is going to be impossible to recover because I am going to want these high doses and they won’t be able to give them to me (especially if I get pediatric because they will even have less of a chance of having any signs of opioids in their system) because of this fact that these new organs won’t be able to handle them.  So… it is really going to be hard on me because I am going to have to live with the horrendous pain and such because we can’t “overdose” the new organs and such.  You know?

But… I guess first thing is first, which is the transplant. Actually… we first have to make it to Indiana on January 20th.  Who knows if that is going to happen because lately things have been so horrendous.  Everything is touch and go and we never know from one minute to the next where I will be.  I honestly should be in the hospital… but I really don’t wanna go.  Dad keeps saying, “Let’s go to the hospital” but I really don’t wanna go.  I am hoping to stay out as long as possible.

ImageHope everyone had a good holiday.  For Christmas, my parents bought me a keychain.  It wasn’t much, but it was really nice.  I love it.  I may not have gotten my miracle wish for Christmas, but I got this.  Perhaps the New Year will bring in my Miracle and 2013 will be filled with only GOOD things.

Well… I guess I will be going. I will keep in touch and let you know what will be happening.  Hopefully I will remain at home tomorrow after the bloods.  I am also supposed to have a ketamine coma on Saturday.  So… hopefully everything will go according to plan.

I really hope that I get to spend the New Year at home.  Even though I won’t be doing anything, I really just want to be at home to ring in the New Year.  I mean… I just will be watching the ball drop by myself in my bed with my cat, Missy, but at least I will be home.  I don’t want to be in the hospital for what can very well be my last New Years if a miracle doesn’t happen.

When the clocks strike twelve on December 31st, people all over the world cheer and wish each other a very Happy New Year. For some, this event is no more than a change of a calendar. For others, the New Year symbolizes the beginning of a better tomorrow. I can’t keep wondering what the next year is going to bring! I can’t believe what my life has turned into… basically went from a life filled with riches and full of promise (was going to be a doctor, have a family, grow up happy, etc.) to being alone, isolated, stripped of everything, poor, and fighting for my life. Everything that I took for granted…eating, walking, and even living.. is now gone. as I am continuing to worsen and deteriorate, I am hoping that 2013 will be a year for the BETTER year and that a MIRACLE will take place because without it… I was told that I won’t be able to survive much longer. During this time when you look back and feel grateful on what you have and think about the upcoming year… please think of me and know that without the help of others… living and enjoying a life in 2013 will not be possible. Any help whatsoever would be much appreciated… a donation (even the slightest amount)… a prayer…. or even to pass this message on. Have a very happy and Healthy New Year.

Love,
Fallon

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December 25, 2012

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Hi-

Just wanted to take this time and write a little bit because things have gotten progressively worse and I am supposed to be in the hospital tonight.  I am at the point right now where things are so bad that I really should be in the hospital.  Dad and I have known for a while that I needed to be in the hospital, but I really didn’t want to go.  I was really hoping that I could avoid it.  After all, I really didn’t want to live whatever time I had in the hospital.  Plus… there really isn’t good hospital for me to be in around here.  If I was to go to the hospital, I really need to be in California or Indiana because they are the only ones situated to handle my complicated illness and me.

I am so complicated and such that going to a hospital really takes a lot of thought because it isn’t as “simple” as people might think.  Even though people think that going to a hospital is the BEST place to be because it might SAVE your life, it won’t always do so in my case.  In fact, it can actually kill me because I can’t be treated like a “regular” patient.  I am so rare and complicated that it is only few hospitals that really are situated to handle me.  Plus… I am so very fragile that they have to be so very careful because the very wrong move can easily kill me.

As I suffer from a rare and life threatening illness, there aren’t many doctors capable of handling my illness.  Not many doctors are knowledgeable about them and therefore, all doctors are not able to “treat” me.  I suffer from so many illnesses and so very complicated.  Some might say that I have the “luck of the draw.”  I have a severe neurological disease that is extremely painful known as Reflex Sympathetic Dystrophy.  It is one of the most painful diseases that you can have and it actually ranks as #1 on the McGill Pain Scale, which means it is the most painful disease to exist.  As you can see on the scale, Arthritis pain is ranked about an 18, Cancer pain is 24, Chronic Back Pain a 26, and then RSD/CRPS is ranked a whopping 42!  On the McGill Pain Scale, RSD pain rates the highest, even above cancer, amputation and childbirth. Most people don’t understand that even a slight breeze across the RSD affected area causes excruciating pain. Even loud noises affect me.  I am basically hypersensitive in every aspect you can imagine.  In addition, everything is magnified for me so that a simple cold to me is like the Flu or a simple needle prick is like someone sticking a knife in me.  The sleepless nights are the worse because I cannot tolerate the pain.  Even the sensitivity of the blanket on me is just too much to bear.  I can’t even wear a shoe or a sock on my foot because that is where the disease is the worst, as the RSD started in my left foot and left leg.  The disease then took over my entire body and affected everything that relied on the nervous system.

Not only do I suffer from that severe painful and debilitating neurological disease that affects everything on the nervous system, but I also suffer from severe autonomic dysfunction, severe gastroparesis, and even a pituitary brain tumor.  In fact, I found out that the form of gastroparesis that I have, which is a condition that reduces the ability of the stomach to empty its contents, but there is no blockage (obstruction), is the most severe form to exist.  The form that I have is actually called Acute Intestinal Pseudo Obstruction, which is when there are symptoms of intestinal blockage without any physical blockage.  This is in addition to a paralyzed or “dead” stomach.  So… basically my entire GI system is gone.  I have dwindled down to 69 lbs. and unless something is done and done quickly, I will end up dying.

I am literally wasting away.  I am so very sick that if I was a male, the doctors said that I could not exist.  I was told that males couldn’t live at the levels that I am.  Fortunately, I am a female and therefore, females can live at a little lower level than males can.  I always knew that females were the stronger sex.  LOL.  However, I am borderline even with that survival level as they can only live down to a level of 12 and I am already at that level.  So action really needs to be taken quickly if I am going to survive.

Only 6 hospitals are really capable of handling me.  I need a rare and complicated transplant known as a multivisceral transplant, and not all hospitals in the country perform them.  In fact, only 6 hospitals in the country do them, as they are extremely rare, dangerous, and run the highest rejection rate of all transplants.  As of the current year (2012), only 35 of these transplants were done.  So, it isn’t like there are a lot done either.  So, I really need to be in the best of hands when having this operation as well because of course it will help the recovery process since the one-year survival rate and five-year survival rate isn’t too good.  During this transplant, I will be receiving a new stomach, small and large intestine, pancreas, and liver.

I have known for a while that I really needed to go to the hospital.  Dad has known it too. However, like I said before, I really was hoping to avoid it.  I also can’t really just go to ANY hospital and therefore, it would be difficult going to California or Indiana, which are the hospitals able to handle me because of the financial expenses.  As it is… we are having a great deal of problems paying out bills as it is.  We don’t even know how we are going to pay for the Indiana trip because we are headed to Indiana on January 20th because that is where I will be having the multivisceral transplant. I just hope that I will be able to make it that long.

Not only do we not know how we are going to manage to pay for the trip to Indiana, but we don’t even know how we are going to pay for my treatment in general.  My treatment is extremely costly because it the cost of my treatment is astronomical.  Even though there isn’t anything that my parents wouldn’t do for me, the cost of my medication, appointments, deductibles, traveling expenses, etc. are so great that they have gotten to the point that despite the cuts that we have made, we can no longer afford them.  So… I have tried numerous ways to raise funds such as make posters, send messages through Facebook, contact media, etc. but nothing has really come about.  I really was hoping that perhaps something would help because the money is so very important because without it… I won’t be able to receive treatment and I will definitely die.  However, I haven’t been fortunate enough.  It really bugs me to see all these other stories aired in the media and despite how many times I have tried to contact them (whether it was the news, talk shows, etc.), I cannot be featured.  I need desperate help because my life literally depends on it and no matter what I do… how hard I try… nothing seems to work out.  It is so unfair because I am literally watching my life deteriorate.  I am watching myself die.

I have gone to the doctors today and despite knowing that my organs have been failing me and that the Better place was in the hospital, my bloods have gotten to the point that they are too low as well.  I really MUST be in the hospital.  However, I am still hoping to remain at home still.  I still want to be at home because like I said I don’t want to live whatever time I have in the hospital.  Plus… every time I am in the hospital, it does cost money.  It costs money for each test I take (even though the insurance does pay for it, I still will have to pay a copayment and it does add up quickly) and I can’t afford it.  It is also Christmas time and I don’t want to spend Christmas in the hospital.

The doctors have already stated that without a miracle, I definitely won’t be here next holidays.  Therefore, I really don’t want to spend these holidays in the hospital.  I really want to make these as “special” as can be… not only for me, but also for my family.  Even though I know that the best place for me is in the hospital, it really is more important for me to be with my family during this time.  It is something that can never be redone if I miss this opportunity. So… I am hoping that I make it through the holiday season at home even though I know that it really isn’t the BEST thing to do.

Since tonight is Christmas, I can’t believe what my life has turned into.  This is supposed to be such a HAPPY time.  However, where people are having such a wonderful night with their families and feeling so grateful for what they have and such, I am here being tormented by pain and living in all my suffering and agony.  I am wondering how my life has turned into this.  I am wondering how I went from a world that I had everything… was able to walk, eat, had friends, was top of my class, was going to be a great doctor, was going to get married, was going to have a family, etc. went to a world filled with nothing. My world that was filled with so much promise literally was robbed from me and went to a world of HELL with nothing but isolation and emptiness. Everything was stripped from me including such precious and everyday things that people take for granted like eating, walking, friends, etc.  I spend all my days on the couch and by myself.  My only companions besides my parents and brother are my animals.  They make my BEST friends. Without my cat and dog… and of course my turtle… I definitely would have no one.  In fact, I have deteriorated so much that I basically spend the entire day isolated in the house and sleeping on the couch because I am too sick, weak, and in too much pain to do anything else.  I literally calculated that the actual amount of time in a 24-hour day that I am off the couch is like 1 hour.  I even hold in going to the bathroom because it hurts so much to get off the couch and is to exhausting.  My life certainly shouldn’t be like this.

But I am hoping that Santa brings me what I wished for this year.  I don’t understand what I did to deserve all this.  I didn’t think that I was that “bad” of a person to deserve all that has happened to me.  In fact… with all that I am going through… I don’t think even the harshest person should get what I am going through.  I don’t wish this on my worst enemy.  It is horrendous.  My dad watches me and I can see the pain in his eyes.  He keeps saying how he “wishes that he could take all this away from me.”  However, I told him “he would never be able to last… not even a minute!”  He has no idea how bad it is like because even though he might have an inkling by seeing what I am going through… believe me… he has no idea.  What I feel and what I project are two different things.

In the meantime, I guess I have to hold on and wait for my MIRACLE.  I received a folder today from Indiana. I never thought that I would be receiving a transplant.  I feel like such a horrendous person, especially during this holiday season because I am basically wishing for someone to die so that I can live.  I am fortunate enough to be able to receive either an adult or pediatric transplant because I am so very tiny.  So, I am feeling kinda worse because in a way I am praying that a child dies.  I feel so cruel by even saying that.  But, when I say this to my dad… my dad says “that is the way it goes.”  I just feel so horrible.  I just hope that it happens in time because I don’t have long to go.  Do you know how many people die waiting for a transplant? I am not just waiting for one organ either… I am waiting for a kind person to donate like 5 parts.  It takes a special person to donate their organs… let alone donate all these needed parts that I need because I need all my organs to come from the same donor.

Even though I really wanted to have the transplant in California, I am kinda feeling ok about having the transplant in Indiana at IU HEALTH.  After speaking more and more to the surgeon there and staff and learning more about the program, I am getting more and more comfortable there.  I found out that out of the 35 transplants that were performed this past year, 15 were done there.  So… it is best that I have it there because they have done the most and are probably the most able to deal with all the complications that will arise.

Even though it can be months before I receive a transplant, IU Health is supposed to have a really good turnaround rate for transplants, I will be on the National List, so my organs can basically come from anywhere.  Since I suffer from intestine failure and such a bad state, I am considered “Status 1.”  This means that I am top priority and pulls from a larger area first to increase chances for getting a donor.  Currently, there are 257 people waiting for an intestine.

I am going to be so busy when I go to Indiana on January 20th.  The hospital is so big.  In fact, it is so big that there is a PEOPLE MOVER to take you around the hospital.  Can you believe it?  It is actually a “train,” but they call it a PEOPLE MOVER.

I have to undergo so many evaluations/tests in order to have this transplant.  I guess they really wanna make sure that you are HEALTHY to have this transplant in the sense that they aren’t wasting the organs.  I am having like ever test/exam under the sun. After all this… I definitely will know my entire body inside and out.  What scares me though is I don’t know how I am going to pay for all of this because I can just see how much this is all going to cost.  Even if the insurance does pay for the test/exam, I still have the copayment to pay, which is about at least $30 to meet with the doc and then at least $100 for the test (depending on the test).  I really hope that I get some support or funds donated because I really don’t know how I am going to afford this.  I can just see my bill after this.  I still have to worry about so many other costs such as receiving my current treatment at home, the transplant, the transportation to the transplant center once the organs become available, etc.  This is only one small piece of the puzzle and it can be so costly.  I just hope that I get help because I need some “light” at the end of the tunnel.  I have to go for numerous blood tests, x-rays, liver biopsy, psychologist evaluations, social worker evaluation, dietician, CT scan of abdomen and pelvis, Cardiology consult, pulmonary function tests with ABG’s, ultrasound of extremities, EGD (Esophagogastroduodenoscopy), colonoscopy, meetings with the transplant surgeons, dental appointments, vaccination appointment (PPD, pneumothorax, HIB, Mengiococcal), Mammogram, Pap smear/Pelvic, Echocardiogram with Doppler and Bubble Study, Dobutamine Stress Echocardiogram.  Some of these studies I am surprised that I need such as the dental exam and the mammogram, but I need the mammogram because they need confirmation that I am free of tumors, cysts, and/or cancer.  I need the dental and pap smear because they want to confirm that I am free of infection or other disease processes before transplant.

I found out that the surgery is really going to be intense.  The length of the surgery will be over 12 hours long.  I kinda expected it because they are basically “gutting” me out and replacing my entire abdomen.  I will then stay afterwards in the ICU for at least a week.  The length of the hospital stay will be at least a month.  The patient one-year survival is about 79% and IU Health has an above average.  So… I am happy about that.

Like I said before, I really need to raise funds because I don’t know how we are going to be able to afford this.  Even though the transplant is “covered” in Indiana, it is really only a needle in the haystack because without further funds donated from people, we don’t know how we are going to be able to even afford the transplant.  Even though the actual multimillion-dollar transplant is covered, we still need funds for traveling, copayments, deductibles, doctors, living expenses, medications, etc.  Even though we are “covered” for the transplant and some other things are “covered,” we still have to pay copayments toward everything, as well as deductibles.  Every time I am hospitalized, go for a test (x-ray, CT scan, MRI, blood test, etc.), see a doctor, get a medication, etc. I have to pay a copayment.  These copayments add up very quickly, as we pay over $30,000 a year in copayments.  Just this past hospitalization in California, we had over $1000 just in copayments… not to mention the other costs.  In addition, we still have to factor in the costs of the doctors, medications, etc. that are not covered by the insurance because not all the doctors that I see or the medications that I take are on my insurance plan.

I was also talking to my family and it appears that my entire family won’t be able to be with me during this time I undergo this radical and risky surgery.  When the call comes, I will have to travel to the transplant center via private plane.  As it is, I will have to find a way of paying for this because it will cost about $12,000-14,000.  However, we have no choice because we can’t relocate to Indiana prior to the transplant because it would mean my father wouldn’t be able to work.  My dad needs to work as much as he can before the transplant because when the call comes that I have to have the transplant, I will have to be in Indiana for about 2 months or so and he will have to be with me during that time, which is time he won’t be working.  We have no idea how we are going to make an income, pay bills, or have the business survive during this time.  So… it is important to get as much money as possible during this time.

Anyway, when the call comes, my dad and I will travel to Indiana via he private plane.  However, my mom and brother won’t be able to come because they will have to stay behind since not all of us can go on the plane. Only me and one other person can go and therefore, only my dad will be going with me.  I thought that perhaps my mom would be able to meet me in Indiana so she would be there when I woke up, but unfortunately due to expenses and the business, she won’t be able to. It really bothers me because I really would have loved to have her there… especially when it is so life threatening.  But I understand that we just don’t have the finances.

Since my mom can’t always be with me, I did buy her something to always know that she is with me and I am always thinking of her.  I bought her and me matching bracelets.  They have hearts and this way it is bracelets that we can “bond” over.  This way we both can know that no matter how far we may be from each other, we are never far in thoughts.

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Well… going to get going.  Just wanted to write and wish you a very Merry Christmas and let you know what is going on.  Since I am trying to avoid the hospital as much as possible, I have another doctor appointment on Wednesday and Thursday.  I will have my bloods taken again.  If my bloods continue to drop, I probably will have no choice but to go to the hospital.  But until then… I am hoping that I can escape that.  I really don’t want to go to the hospital.  But, with all the bleeding and such, I don’t know if I am going to make that possible.  I am bleeding too much and I am way too thirsty for my bloods not to fall further.  But hopefully they won’t.

I am also scheduled to have a ketamine coma on Saturday.  So… at least I will get one day of a “vacation” from this illness because at least when I am in the coma I am knocked out from the pain and out of reality.  Unfortunately though when I wake up… everything is back to where it began.  I just hope that even though I need a much higher dose that isn’t FDA approved and I have to go out-of-the-country in order to get it, I am hoping that the ketamine is at least stopping or slowing the progression of the illness because it is spreading like a wildflower.  I am hoping of that at the very least because I can’t afford for it to spread and takeover anymore because it is basically everywhere and wreaking so much havoc.  However, at the very least, I am pain free while I am “under” the coma.  I just have to deal with the hallucinations and nightmares that accompany and are associated with the ketamine, but I will take them over the horrible suffering and pain I am anytime. After all, without the ketamine, I am suffering 24/7 and I don’t get any break whatsoever.  So… I kinda really am looking forward to this treatment.  Kinda sounds weird saying I am looking forward to being put into a coma, right?

I have been reading a very good book as well.  Since I don’t sleep because of the horrible pain, I have been doing some reading.  It is called THIS IS WHERE I LEAVE YOU, and it is written by Jonathon Tropper.  I strongly recommend it.

Well… talk to you soon.  I better get to sleep if I want Santa to come and have any chance of him bringing me my wish.  After all… Santa only comes when you are “sleeping” and I don’t wanna miss him.  Maybe I will get a miracle of “getting better.”  Maybe I will be lucky and get my wish for either “getting better” or at least getting help from others.  I really hope that if I can’t get the funds from people, I hope that at the very least I get the prayers, support, and encouragement from others because those are “free” and can be very powerful as well.  It has been a long a difficult road… especially now… but knowing that people “care” and are behind me supporting and encouraging me… it really makes a HUGE difference. It really gives me the strength to continue on.  I am also hoping that I receive some funds or even a response from the media because I desperately need all the help that I can receive. Even $1 is one less dollar that I have to come up with.  I don’t know how I am going to be able to afford all this treatment and unless I come up with the funds, I don’t know if I will be able to continue receiving treatment or even be able to receive the transplant.  Even though I have been so fortunate for my family to have given me so much and provide for me, the bills have become too much and as a result, we can no longer afford the treatment despite making the necessary cuts.  Therefore, I am hoping that others will come to my aid and help me.   I really don’t want to die and I am hoping that others will help.  I have tried one more time to send out a Facebook message for help, as well as posting some flyers in stores.  But nothing really has come about. At least I have tried, and at the very least no one can’t say, “I haven’t tried all that I could!”  I definitely haven’t gone down without a fight!

Well… going to get going because not feeling well.  Hoping that tomorrow will be a better day and I make it to New Years.  Hoping that I get the “help” from others that I desperately pray and wish that I will get.  Happy Holidays.

-Fallon

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December 21, 2012

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Hey-

Just wanted to inform what has been happening since it is “touch and go” lately.  Things have not been good with me and to be honest… we never know from day-to-day where I am going to be or to be honest… IF I am even going to be here.  I know it is a scary thing to even think of “not even being here,” but the truth and reality is that it is coming to that point because I am deteriorating so.  I really need HELP.  Unfortunately though, I can’t get any help really around here and all the HELP that I need is really out-of-state and requires money… something that I don’t have.  So… as you can see we are really hitting brick walls everywhere and these brick walls are really quite possibly going to quite frankly end up killing me.

Time is really of the essence because of how I am.  I can’t believe what my life has turned into.  I really can’t even stay at home anymore because of how things have gotten.  For me to say this… you know things are bad because you know I am the first NEVER to push the panic button and NEVER to run to the hospital.  My dad keeps walking around the house saying how I “belong in the hospital,” and to be quite frank with you… he is certainly right.  I am literally deteriorating and it has gotten to the point that unless there is some kind of intervention, I highly doubt that I am going to see my birthday, which is in February.  I am just praying that I see the New Year. 

However, even though my dad and I both agree that the hospital is the BEST place for me and I can’t live at home any longer because I am so very sick, there really isn’t any place for me to go.  I can’t just go to any hospital because I can be made “worse.”  The only places for me to go are to the hospitals that can handle my complicated diseases and me.  However, there aren’t any in the area.  I really need to get to California and Indiana.  They are the only places that will be able to help me because I am so very fragile and I can’t be treated like a “regular” patient. Plus, if a physician who is unfamiliar with my illnesses treats me, they can easily make me worse.  There are only really 6 hospitals in the country equipped to handle my situation and unfortunately they are not in New York.  I really need to get to California and Indiana in order to save my life, but we don’t foresee that happening because of financial reasons.

Even though I am scheduled for going to Indiana on January 20th for the transplant, we are just hoping that I will be able to last that long.  We honestly don’t even think that is going to be possible… especially without some kind of intervention/treatment. My doctors in California are aware of my situation and although they cannot do the actual transplant because of insurance reasons, the doctors still want me to return there in an attempt to “buy” me time because without it we don’t know if I am going to make it much longer.  Even though they are quite able to do the transplant too for me in California, my insurance will not permit it unless I am rejected by the 2 facilities that they allow.  So, until that happens… it looks like I can’t have the transplant in California. But… they still want to proceed with treatment there because they want to put me into a “coma” and put tubes in me.  In this way, hopefully they will be able to sustain me until I receive the coma.  Even though I have rejected the tubes when I had them the last time I was there, they were hoping that if they put me into a “coma,” I would better accept them. 

Unfortunately they can’t do the transplant in California until I am “denied” by the two allowed places by the insurance.  One place happens to be Nebraska.  Even though this place is not the BEST place for me to have the transplant, the insurance company doesn’t care.  The insurance company is more interested in saving money or something than saving my life.  The hospital in Nebraska doesn’t even do my kind of transplant and the head surgeon even left the hospital.  Therefore, not only am I not in the “best” of hands but they also don’t even perform the surgery that I need.  They do intestinal transplants, but I go beyond that.  Unfortunately, they are willing to have me as their “guinea pig” and perform the transplant that I require.  However, I don’t want to be the “guinea pig” and I want to be in a place that will be best able to handle me, especially when my transplant is one of the rarest and most complicated.  It runs the highest rejection rate of all transplants and therefore, I don’t want to be in a place that is not able to deal with it.  You know?

I need a multivisceral organ transplant, which incorporates getting basically a whole new set of abdominal organs.  I have to get a new stomach, small and large intestine, pancreas, and now I was told I will most likely need a liver.  As the doctor said, it is kind of like replacing the engine of the car. 

Even though the results of intestinal transplantation have dramatically improved over the years, they are still not good.  My doctor was telling me that even though there have been improvements, the survival of transplants at 5 years is only 50%. That means that at 5 years, 50% of all transplants die. It is really scary to think of that because I don’t want to think of that number because it is really high.  Yet, one of the most important indicators of outcome is related to the experience of the transplant center. Therefore, it is important to go to a hospital that is really good.  That is just one more reason why I can’t just go to ANY hospital like Nebraska.  I am much better going to a hospital like Indiana or California.

So, it appears if anything… I can only go to California for “treatment” in the meantime of waiting for the transplant, which I will most likely be having in Indiana.  Even though the transplant is “covered” in Indiana, it is really only a needle in the haystack because without further funds donated from people, we don’t know how we are going to be able to even afford the transplant.  Even though the actual multimillion-dollar transplant is covered, we still need funds for traveling, copayments, deductibles, doctors, living expenses, medications, etc.  Even though we are “covered” for the transplant and some other things are “covered,” we still have to pay copayments toward everything, as well as deductibles.  Every time I am hospitalized, go for a test (x-ray, CT scan, MRI, blood test, etc.), see a doctor, get a medication, etc. I have to pay a copayment.  These copayments add up very quickly, as we pay over $30,000 a year in copayments.  Just this past hospitalization in California, we had over $1000 just in copayments… not to mention the other costs.  In addition, we still have to factor in the costs of the doctors, medications, etc. that are not covered by the insurance because not all the doctors that I see or the medications that I take are on my insurance plan. 

In addition, we have to worry about the traveling expenses.  Since it is not exactly “local,” we will have to travel via plane to these places.  Then, we will have to also pay for a hotel and that will also be expensive.  When I have the transplant, I will have to be there for an extended amount of time (probably about 2-3 months), which means all that money being paid to live in a hotel. It will get very expensive, especially when my dad won’t be working during this time. 

Finally, we have to also worry about the actual transportation when I get the call that the transplant is available.  Even though the surgeons really want me to live within 4 hours of the center because when the transplant becomes available I need to get there within a certain amount of time, they are allowing me to live at home until I receive the call as long as I can get to the hospital via private plane when I get the call.  Therefore, I need to find a way of coming up with the funds to pay for this private plane, which will probably be about $12,000-$14,000.  We really can’t live there prior to the transplant because it is going to be hard enough to live there afterwards for that length of time due to the fact that my dad won’t be able to work.  We will not be having any income during this time and since my dad won’t be able to work, his business will suffer greatly. We don’t know how long it will take to receive the transplant, so my dad really needs to make the money when he can. Hopefully I won’t have to wait long for the transplant, but you never know.

I really need this transplant because I am dwindling down to nothing.  Not only am I in massive pain, but my body also refuses to digest food. Nothing passes through my mouth without causing excruciating pain—not even water.  In fact, I can be very content as long as I don’t have to eat because every time I eat, it is just pain, pain, and more pain.  Plus, I also have to deal with all the vomiting as well. Whenever I eat, my digestive tract inexplicably freezes up, causing major backups and terrible pain. 

I have been doing really horrible lately.  My energy is like that of a puppy—very short-lived and then it will disappear, and I am be empty.  I figured that out of a full 24-hour day, I am only really awake about 5 hours and out of those 5 hours… I am only really off the bed or couch about 30 minutes.  I am just so weak. 

I can’t swallow and my stomach has been giving me a lot of problems.  I am supposed to be going to the swallowing doctor today because it is at the point that I can’t swallow anything, but who knows if the doctor will be able to do anything.  He probably won’t because it all comes down to my autonomic dysfunction and the fact that my GI system is gone.  I really need the transplant more than ever.  The doctor will probably say that he “can’t do anything but to call him if there is an emergency and he will admit me or something.”

I also spoke to my GI doctor.  My GI doctor is scared that I possibly could have a blockage or an obstruction.  He is also scared that I possibly perforated something as well, which would be an extreme emergency.  After all…  I am feeling so much worse.  Therefore, even though he doesn’t want me per se hospitalized here because it would make worse, he does wanna make sure that I don’t need immediate surgery.  Therefore, he wants me to go to the ER and  have all the tests performed.  He said that when they want to admit me, he told me to “refuse” to be admitted.  He said it is “my right” as to whether I wanna be admitted or not.  But even though I won’t be admitted, at least we will have all our scans and get to the rule out everything to make sure that surgery isn’t an emergency.  You know?

In addition, the doctor said that if I go to the ER, at least I will get pain medication by IV.  I have been in so much pain lately… more pain than ever.  Not only have I been maxing out on all my medications, but the doctors also have even raised them.  I am on a double dose of morphine and it isn’t even cutting it.  So… the doctor said at the very least… I will get pain meds.  But, what is the point?  I will get out of pain for a couple of hours and when I get home and back off the IV… I will only be back to square one.  But,  I must say that the thought of the IV painkillers is very tempting.  I think that this weekend dad and I are probably going to go to the hospital because we are going to have those scans done. I am trying to hold out on the pain meds in the hospital, but if I can’t hold out… I am going to go. 

I am also scheduled tomorrow (Saturday) for another ketamine coma.  Hopefully this will do something for the pain.  I know that it really won’t do anything once I wake up, but at least it will give me 1 day without pain.  After all,  I don’t get a moments rest from the pain.  Also… I will receive the IV treatment needed for my organs because they are in organ failure and shutting down.  So, it will be a win/win situation overall.

Ketamine is an NMDA receptor and even though it isn’t a drug that comes without risks, it is definitely worth undergoing if it means getting out of pain for a bit.  In a high enough dose, it can theoretically “cure” my neurological disease, but unfortunately that isn’t FDA approved in the United States. So, I have to wait to receive that amount outside the United States as well, which will also be additional money because the insurance doesn’t cover that either.  The cost of that coma outside the United States will be close to $100,000.  So… as you can see… it is never-ending.  I surely wish I had a money tree in my backyard.

Even though I can’t receive the necessary amount of ketamine to “cure” me, I at least go for these comas in New York as a way of hoping to “delay” the neurological disease from spreading or at least “slow it down” from spreading.  It has been spreading like a wildflower and we are hoping at the very least that it is doing this because it is literally taking over.  At the very least, I will be out of pain while I am “under” the coma because it is the ONLY relief that I get.

So… Saturday I will spend the entire day in a coma.  My dad will be my SUPERMAN because he will take me and spend the entire day with me.  I am so grateful for him because without him, I definitely wouldn’t be here today.  He has done so much for me that I can’t even tell you how much I appreciate it.  He has really been my “knight in shining armor.”  Not only is he my “dad,”but he is my SUPERMAN, my Best Friend, and my KNIGHT IN SHINING ARMOR.  I love him in more ways that I can ever tell him.  I just feel so bad for what I do to him. I only wish that I could make his life better because he definitely doesn’t deserve this.  I know it hurts him so much to see me like this because he would do anything and everything to get me better.  He is always saying how he “wishes he could take it all away from me.”  But to be honest… I tell him that he wouldn’t be able to handle it.  I told him that if he took it from me, he would instantly give it right back to me because he doesn’t know what he is getting himself into nor would he be able to handle it.  But he insists that he doesn’t care because if it means me getting well… he would do anything and everything.  My dad would go to the moon and back or cut off his right arm if it meant me getting well.  It must hurt him so much to know that no matter what he does, his hands are tied.  I see it in his eyes because he looks at me and I see the pain in his eyes since he can’t “help” or protect me.  But just being there for me… he does plenty.  

Going for ketamine with my dad is such an experience.  Since I am “out” for the entire day… there really isn’t much to do for my dad.  There is only so long that he can stare at me.  So, my dad ends up going a little “stir” crazy.  He usually takes my camera and ends up taking pictures of everything.  I get the weirdest pictures. I get pictures of anything and everything that you can imagine from me to dirt on the floor to my IV bag to his hairline to his teeth to his eyeballs to his watch to his teeth to everything else.  He is the only person I know who memorized everything in the room and knows when something is new or different.  At the very least though, he gets to rest because he works so hard all the other time.  My dad has been working 7 days a week from like 3 AM to 7 PM because of all the appointments he has to take me to.  He tries to make up whatever work that he misses out because of all this time he has to be away from the business because it is money lost,.. money we can’t afford to miss out on.  However, he doesn’t even have a “desk” job so he is always doing physical work.  He is also no youngster and therefore, it really is hard on him.  So… at least when I go for ketamine, he can “rest” during this time because while I “sleep”… he can sleep too. In fact, there have been times when he has said to me “aren’t you going to go to sleep already so I can go to bed.”

Hopefully everything will go ok tomorrow.  Even though I will be getting a day without pain, it isn’t without risks.  I always get so many complications from the ketamine.  My heart always goes very low, I get sick to my stomach, I get really bad hallucinations and nightmares, etc.  Ketamine is not a “everyday” drug and with my complicated nature… the doctor has to be extra careful.  I have to be carefully monitored and therefore, the doctor doesn’t usually take on extra patients when I am there.  This way he can put his full attention on me and if there is an emergency… he can be there in an instant.  But… even though we always end up having problems… hopefully tomorrow will go better than usual.  I can hope, right?  

Since ketamine is notorious for bringing upon nightmares and hallucinations, I usually bring my iPod to listen to music.  This way it hopefully keeps the “bad” stuff away.  I happened to enjoy the 12-12-12 concert that they did for the Hurricane, so at least I will have that to listen to.  I also have the new music that they have done on X FACTOR and THE VOICE, so at least I have some new material.  My parents have it hard though because they have to stay awake that night and wake me up constantly because since ketamine gives me nightmares and such, it puts me into such deep sleeps and nightmares that I can’t get myself out of without their help.  As a result, they have to frequently wake me up so that I am not “stuck” in them.  So… it will be an interesting night as well.  

My entire body is just getting worse and worse.  It is like nothing is helping me. I had to go to the dentist today because my filling came out of my tooth and I ended up cracking it a bit more.  Unfortunately it was in a place that was right by the root.  Even with all the injections of novocaine and the extra morphine, it was incredibly painful as the dentist worked on it.  I barely could even sit in the chair.  It was amazing that with all the meds I had in me and all the novocaine, it really didn’t even feel like the novocaine was doing anything.  I have become so sensitive that nothing is helping with the pain anymore whatsoever.

In addition, I am having reactions to everything.  I even had a reaction to the novocaine that was given to me. I have been having really bad autonomic dysfunction reactions to everything lately.  My body has just not been cooperating lately.  Therefore, with my body deteriorating the way that it has been doing, I was extremely dizzy and my heart felt like it was going to bounce out of my chest after the novocaine was given.  Everything is just out of control.

I am so very scared with everything happening. I know I am weakening and I know I am deteriorating. I am hoping to make it to the New Year, but I don’t know if that is going to happen.  I lay in my bed wondering if I am going t make it through the night because I am so very sick and suffering.  You have no idea what it feels like to feel your body deteriorating and literally feel yourself dying. It is the scariest thing in the world.

Well… Christmas is around the corner and Christmas is known for miracles.  Maybe I will get a miracle of “getting better.”  Maybe I will be lucky and get my wish for either “getting better” or at least getting help from others.  I really hope that if I can’t get the funds from people, I hope that at the very least I get the prayers, support, and encouragement from others because those are “free” and can be very powerful as well.  It has been a long a difficult road… especially now… but knowing that people “care” and are behind me supporting and encouraging me… it really makes a HUGE difference. It really gives me the strength to continue on.  I am also hoping that I receive some funds or even a response from the media because I desperately need all the help that I can receive. Even $1 is one less dollar that I have to come up with.  I don’t know how I am going to be able to afford all this treatment and unless I come up with the funds, I don’t know if I will be able to continue receiving treatment or even be able to receive the transplant.  Even though I have been so fortunate for my family to have given me so much and provide for me, the bills have become too much and as a result, we can no longer afford the treatment despite making the necessary cuts.  Therefore, I am hoping that others will come to my aid and help me.   I really don’t want to die and I am hoping that others will help.  I have tried one more time to send out a Facebook message for help, as well as posting some flyers in stores.  But nothing really has come about. At least I have tried, and at the very least no one can’t say that “I haven’t tried all that I could!”  I definitely haven’t gone down without a fight!

Well… going to get going because not feeling well.  Hoping that tomorrow will be a better day and I make it to New Years.  Hoping that I get the “help” from others that I desperately pray and wish that I will get.  Happy Holidays.

-Fallon 

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December 17, 2012

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Hi-

Just wanted to update you on what has been happening since things have been getting so very bad.  I have also learned some really new and important information that I wanted to share. 

I am getting so sick.  I basically spend 5 hours awake and the rest in bed.  The 5 hours awake are spent vomiting… what a life!  I just gotta hang in there though because I just have to make it to Indiana.  I desperately need this transplant.

I’ll be honest… getting the transplant scares me.  I don’t know how I am going to be able to do this.  It is going to be such a costly operation… not to mention how hard it is going to be on my body.  As much as I want the transplant… I am really scared and hesitant to get it.  I have second thoughts about it even though I need it desperately because without it… I am probably not going to see my birthday.  I am scared because I know how difficult this operation is going to be.  I know that this operation is so dangerous and runs the highest rejection rate of all transplants.  I am so scared of not making it through the operation because of how dangerous it is and how fragile I am already.  My parents are freaked out about it as well… especially my mom.  I am so afraid of going and not coming home.  

Never did I think that my life was going to end up like this.  I never thought that I was going to need a transplant… let alone a multivisceral transplant that incorporates a stomach, duodenum, pancreas, and now a liver.  It just continues to worsen all the time.  But… as my dad says to me “I am being challenged or tested for something better!”  Hopefully he is right.  

I am continuing to worsen and time is really becoming crucial.  I am so weak and I can barely move.  I barely even get up nowadays.  Like I said beforehand, I spend all my time in bed basically because I am too weak to even move.  Even typing takes too much energy and so does getting up and going to the bathroom.  Therefore, I try to hold in going to the bathroom as much as possible.  But, it really isn’t that hard to do because its getting harder to go to the bathroom nowadays anyway because there just isn’t as much urination coming out despite always drinking.  I am constantly drinking because I am so very thirsty, and yet… I can’t really go to the bathroom.  I can’t even do anything to quench my thirst.  The doctors think it all has to do with my condition and my body shutting down.  

Missy won’t leave my side.  I guess that is another sign that things are worsening BIG time.  Whenever I had worse days than others in the past, Missy used to never leave my side on those days.  Mom and dad call Missy my babysitter because she always is keeping a close eye on me.  She always was able to tell my parents when I was doing “worse” because like I said… she wouldn’t leave my side on those days.  

However, it is at the point where Missy just remains with me all the time.  It is as if she senses how much things have gotten so badly.  It is really amazing how cats can sense these things.  She stays with me all the time and she even follows me when I even get up to go to the bathroom.  Even though I only get up for a matter of minutes to go to the bathroom (which is literally right next door to my room), Missy has to come with me and then she returns to the bed with me afterwards.  She sleeps right by my hip and against me, as if she is protecting me.  I love how she sleeps there because she keeps me calm and I am able to pet her easily in that position.  

Even when I am up and about for those 5 hours a day, she follows me.  The interesting thing is that if I move and she happens not to be by me during that time, she will literally come running to me.  I have nicknamed her “Twinkle Toes” because every time she hears me stirring, she will come running.  Plus… she always wants me to hold her and kiss her and everything during the 5 hours I am awake.  It is as if the time in bed with her sleeping against me and me petting her isn’t enough.  She certainly is one-of-a-kind.  Missy is definitely something I am going to miss when I go to Indiana, especially when I have the transplant because I will be there for so long.

Speaking about going to Indiana… I am really nervous about the transplant and such.  I guess it is only normal, but I am having second thoughts.  My parents say this is normal, but I know it has to be though. I just hope I am making the right decision because I know how dangerous and risky it is.  It is as my mom says, “Either I have it and pray that I make it through the operation and hope that the transplant works, OR I just live out whatever time I have left and don’t have it.”  If I don’t have the transplant though, I won’t have long because my body is definitely shutting down and shutting down fast.

I know that I need the transplant because without the transplant, I would not be alive today. But what scares me is that once it is done, there is no going back and it’s a decision for life.  I know how risky it is and I am just scared I am not going to make it through it. I know it sounds strange, but I am kinda “attached” to my organs. After all… I had them all throughout my life.

I am really worried about getting to Indiana because I will need to fly to Indiana when the transplant is available via private plane.  I don’t know how we are going to manage this because it is going to be so very expensive.  It is probably going to cost about $12,000-14,000.  I am desperately going to need help raising money or something because I definitely can’t afford this on my own.

The only way around this is by relocating prior to the transplant.  However, it can be months before I get the transplant even though Indiana has a higher than usual turnaround rate transplant.  Patients usually spend only an average of 1.7 months on the waiting list, compared to the 5.8-month national average.  But, it still is a “wait.”  If we would have to relocate, it would definitely be a problem and a great hardship because not only would it be expensive because we would have to factor in another cost such as living expenses (we will also have my mom and brother living at home in New York as well so it will be a second home basically), but my dad won’t be able to work.  For my dad not to work even a week, it can be really detrimental on the business and be a BIG deal.  With him not working, the business probably would never survive.  We don’t even know how it is going to survive after the transplant because I will definitely have to spend quite some time there afterwards (probably about 2 months or so) and of course that means that dad won’t be able to work then either.  So, we really can’t add any more time to that because we are already going to be suffering greatly during that time.  Not only will this really severely hurt the business, but we also will not be having any source of income.  This means that we will have no source to pay for housing and living expenses (whether it is in Indiana or at home in New York) or medical treatment.  It will be a disaster.

So… we really need to cut down on the amount of time spent in Indiana as much as possible so that dad will be able to continue working and we will be able to have money to pay for things.  So… like I said before… the only way around this is to be able to go to Indiana when I get the call for the transplant via private plane.  Indiana has a rule that patients have to live within 4 hours of the transplant center, but the surgeon is willing for me to live at home as long as I can get to the hospital via private plane when I get the call.  So… this is basically the ONLY way that it can happen.

So… it looks like it has to be private plane! I just have to find a way of raising the money now.  If you have any ideas… please let me know.  If you can help me out in anyway (not just by donating), I would really appreciate it as well.  I have tried numerous attempts to raise money, but they haven’t really worked out.  I have tried making websites, putting up flyers, putting up messages on Facebook, contacting the media, writing to famous people, etc.  I even have gone so far as to write to the president and Queen Elizabeth because I am so desperate.   I haven’t even tried all these attempts once, but multiple times… especially recently because I was hoping with the holidays that perhaps I would have more luck since it is the season to “give” and the season for “miracles.”  However, nothing has come about.  I know the key to this whole situation is to have the media broadcast this because I really need nationwide attention.  It actually really tears me apart to know that I can’t get any help from the media because I see attention given to other stories and I wonder why I can’t get the attention that I need when I need it so desperately because without it, I am definitely going to die.  I not only need the funds for the plane, but I need the money for treatment as well.  Although my family has made “cuts,” the cost of my medical treatment is so astronomical that we really need help in continuing my treatment.  Everything is just soooo expensive and can’t be afforded anymore… doctors, copayments, medication, traveling expenses, health insurance, etc.  Co-payments alone are over $25,000 a year and not everything is even covered by the insurance.  Even my health insurance per month is so expensive because I need to have a very “high” plan because of all of my needs/

However, it has gotten to the point that I can’t do this anymore.  I have deteriorated to so much that I need help.   I really need someone to really “takeover” and help me out.  I fear that without the necessary funds, I won’t really be able to continue treatment… let alone get the transplant because I definitely need the funds to get to Indiana (the plane alone is $12,000-$14,000).  Even after the transplant, the cost of the anti-rejection medication, which is something that I will need to take in order to stay alive will cost me $1,000 alone (not including all my other medications).  So, if you can possibly not only just think of other ways to raise money but can actually HELP… I would appreciate it.

I think I should also tell you how bad things have gotten.  I can’t begin to tell you how bad they have.  I never thought that it could get this bad.  I can literally feel my organs shutting down. It is the scariest thing in the world.  Even though I knew that I was sick, I didn’t realize that I was so sick until lately though.  I didn’t realize so many things until I spoke to my new transplant surgeon in Indiana because he kinda opened my eyes up to exactly what was going on.

Not many doctors know what is happening with me because I am so rare and complicated.  However, it is amazing that those who know what is happening with me but don’t know how to treat me… they don’t really tell me the FULL picture.  They give me 1/2 information so I know that there is something going on, but they don’t tell me everything because they either don’t want me to “worry” or because they know that they can’t help me.  

I have always known that I had severe gastroparesis.  Gastroparesis literally means “paralyzed stomach.”  It is one of the most severe and complicated gastric motility disorders to manage.  The stomach does not contract as well as it should, if at all.  This results in delayed emptying of food and liquid into the small bowel.  Often foo will sit in the stomach for many hours or several days.  It is not uncommon for patients to vomit undigested food eaten many days earlier.

However, I never knew how bad it really was.  I never knew that I had one of the worst forms of a failed GI syndrome.  I was just told that my GI system was “paralyzed” or “dead.”  Little did I know that it had what was called “Acute Intestinal Pseudo intestinal Obstruction” or “Ogilvie’s syndrome.”  Acute Intestinal Pseudo-Obstruction (ACIP) is a rare disorder characterized by persistent signs and symptoms of intestinal blockage in the absence of any physical blockage. The small and large intestine loses the ability to contract and push food, stool, and air through the gastrointestinal tract. This results in nausea, vomiting, early satiety, heartburn, weight loss, vitamin deficiencies, fatigue, malnutrition, abdominal pain, bloating, and dehydration.  It is also no unusual for other portions of the GI tract to be affected such as having dysmotility in the esophagus and having problems emptying the bladder.  In fact, when I get “air” in me, I actually have to use my hands and manipulate it out of me by working it out of me by pushing on different parts of my abdomen until I get it out. 

I am finally in awesome hands with an awesome surgeon in Indiana because I have learned that I have this condition.  I have learned that all this time doctors have said that I needed tube feedings and have tried multiple attempts to “feed” me because I am unable to eat at all were kinda a waste.  They were right that I needed these interventions because I was literally starving to death, but they were never going to be effective because the problem was that the food couldn’t PUSH through.  Doctors have tried everything from Nasogastric tubes to J-tubes (directly into the intestine) and when they put stuff into me, they automatically became stuck because nothing could be pushed through due to my condition.  As a result, Tube feedings may result in bowel obstructions and infections.  Even when doctors pushed for TPN, or IV nutrition, it was a poor idea.  Complications of IV nutrition include sepsis (infection of the bloodstream), loss of venous access, blood clots, liver failure, and death.

Lately things have gone from bad to worse.  I have found out on a recent x-ray that not only have my organs been being compressed from this disease such as my heart, but it is REALLY being compressed that they are shutting down.  I didn’t realize how much my GI system was blocking my other organs such as my heart and compressing them until now because I have gotten so very sick. 

The doctors are so very worried about how my dilated GI tract (stomach and colon) is compressing my organs.  They are worried about the organs shutting down further and worried about me going into septic shock.  However, there really isn’t much to do without the transplant.  I can go for “decompression,” but it is only very temporary.  The doctors are also very worried that I am going to perforate my cecum or other parts of my intestine because once that happens, I can die immediately. 

As it is, I go for IV treatment in order to try to keep my organs functioning.  But, it is only a temporary treatment and to be quite honest with you… it really isn’t worth it.  I don’t even think it is working.  I do have another ketamine coma on Saturday, so perhaps maybe that will help.

I really need help and help immediately.  I know I am asking a lot, but if you can help me in any way… I really hope that you can.  I know this update is kinda mumble jumble and all over the place, but I just wanted to let you know what is happening in case something should happen since things have gotten so very worse, as well as ask you if you can please help me since I have gotten to weak to do continue to do so on my own.

I really don’t know what the future has in store for me.  As I said before, I am very weak and weakening everyday.  I am bleeding worse than before, my stomach is more distended, vomiting is worse, I am drying out, I can’t quench my thirst, etc.   I lay at awake at night and wonder if I am going to see morning.  I feel so horrible that I wonder if it is my time to “go” or not.  My dad frequently checks on me to make sure that I am breathing because he too is afraid that I am not going to make it much longer.  We are living day-to-day and hoping to make it to Indiana.  In the meantime, we have all my medical records all set up in case dad has to bring me to the hospital in an emergency.

All Dad keeps wanting to do is to take me to the hospital because he is so very nervous.  Both he and I know that the hospital is probably the best place for me because I am deteriorating so much and my dad doesn’t want me dying at home as well, but the hospitals in New York just aren’t the answer.  I really need to go to a hospital that would be able to handle me because if I go to a  hospital that can’t treat me appropriate, especially since I am so complicated and rare, it can really make things worse… even kill me.  I really need to get a hospital that can help me and only about 6 hospitals in the country really are knowledgeable about my illness… one being Indiana.  It is a shame that no hospital really can handle me in New York because you would think that a place like New York would have such great medical treatment.  So… we are really trying to hold out as long as possible to not to have to go to a hospital in New York because like I said before… they wouldn’t really know how to treat me and probably would make things worse.  After all, I am not a straightforward case and they can’t treat me like a regular patient.  I am extremely fragile and the wrong move can easily kill me.  Plus… I have no immune system and the hospital is the best place to pick up an infection.  If that should happen, I can easily die as well.  So… I really have to be careful and make some wise decisions before going to the hospital because even though you would think the hospital would be the best place to be especially when you are so sick like me… it may not be the case in my situation.

Indiana really can’t come soon enough.  The surgeon would take me tomorrow there, but I really need to have psychiatric clearance there as well.  Since the earliest I can get an appointment in that department is January, I will have to wait to go to Indiana until then because the surgeon doesn’t want me traveling back and forth in my given condition.  Plus… without the psychiatric appointment, his hands are tied anyway.

Well… I guess I am going to go. I am hoping for better and brighter days to come.  Please… if you can do anything… whether it is donating, fundraising, spreading the word that I need HELP, saying a prayer… I would really appreciate it.  I am severely deteriorating and I really don’t want to die.  I need all the help that I can get.

Love,

Fallon

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December 15, 2012

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Hi-

Well… what a day I have had today.  I guess you have figured out that if I am writing to you right now, I have news to share with you.  I have found out today that we will not be going to Nebraska on Monday.  Even though I am so very sick and rapidly deteriorating, it will not be happening on Monday.  It appears in the best interest of me to “wait” and put the trip off until January because that is when we will be going to Indiana.

Gosh… I just hope that I will be able to make it that long especially when I am rapidly deteriorating.  But, it is definitely in the best interest for me to wait and go to Indiana instead because I need to go to a hospital where I am going to receive the BEST care from both the surgeons who perform the surgery and also the hospital over all.  I found out some interesting news today that really impacted me going to Nebraska since the operation that I am having is so very rare and risky.  Remember… the operation that I am having is very dangerous, as it runs the highest rejection rate of ALL transplants.  In addition, I am not in the “greatest” condition.  I am one “sick” person and therefore, I really need to go to the place where I am going to receive the BEST care and the place where they will be able to handle me in multiple ways.  I am extremely complicated because I not only just suffer from intestinal problems, but I suffer from problems in various areas… Gastric, Neurological, Cardiac, etc.  As a result, I need all the departments in the hospital to be top notch instead of just the one department.  I need a hospital that will be able to deal with me because I suffer from not only severe gastroparesis, but a severe autonomic dysfunction, a severe neurological disease, a brain tumor, heart problems… just to name a few. 

There are many important things to consider when selecting an intestinal and multivisceral transplant center, including experience, survival rates, program longevity, participation in research, and physician and staff credentials.  The IU Health Hospital in Indiana is considered one of the leading transplant centers in the world having performed half of the worlds experience in intestinal and multivisceral transplant.  I have been thinking that all along, but it all came down to speaking to the head doctors today from both hospitals.  After speaking to the head doctor in Indiana, I never found out so much information as I did today, and I never felt so comfortable as I did in making my decision in going to Indiana as I have as I did today.  I am really happy to be going to Indiana because I really think that I am in the BEST of hands.  The only problem is that I am going to have to hang on until then because I will not be able to go to Indiana until January.  They would love to have me come sooner because I am rapidly deteriorating, but one of the appointments and evaluations that I need for clearance for the transplant includes a psychiatric clearance. I don’t know why but psychiatric appointments are always impossible to get at all hospitals; they always take forever.  Since we have to wait anyway for the psychiatric clearance and they don’t want me to travel back and forth (even though they could probably see me sooner for other areas), I have no other choice but to wait until January.  I guess part of the reason you have to wait so long for a psychiatric appointment is because there never is that many psychiatrists on staff that can do them. Usually they only have 2 or so.  So… I just have to hang on until then, which I am hoping will be possible because I am rapidly deteriorating.

When I spoke to the head doctor in Indiana, he had read through my records.  Although he hasn’t read through all of them, he had a good enough picture of my case.  Of course though I am more complicated and complex than I present on paper, but at least he had a basis of what I am all about and what I need.  He spent so much time on the phone with me, and I never expected him honestly to do this.  He spent over a ½ hour on the phone with me and even when he received another call, he still continued to talk on the phone with me.  Even when he had to go after spending that much time with me, he said that if I had any other questions or if I wanted to talk again, I will be able to and can contact him anytime.  He really wanted to make me feel comfortable and he surely accomplished that task.

The doctor really told me the “ins and outs” of the transplant world as well as stuff that was happening with me since he is one of the TOP surgeons in the world.  First of all, it appears that I just don’t suffer from a “dead” GI system.  Instead, I suffer from the worst kind of gastroparesis that you can imagine.  He said that I suffer from a condition known as “Intestinal Pseudo-obstruction,” caused by severe impairment in the ability of the intestines to push food through.  It is also known as “Ogilvie Syndrome.” It is characterized by the signs and symptoms of intestinal obstruction without any lesion in the intestinal lumen.  In fact, when you look at my GI system, the GI system kinda looks “normal.” However, the clinical features can include abdominal pain, nausea, severe distension, vomiting, dysphagia, diarrhea and constipation, depending upon the part of the gastrointestinal tract involved.  The intestines react as if there is a true mechanical obstruction or blockage. However, when tests are performed, no physical evidence of blockage is found.  The whole problem is that it can’t have the peristalsis to push the food through; the organs lose their ability to contract and push food, stool, and air through the gastrointestinal tract. The whole GI system is essentially “dead.”

One horrible part of this illness is that intestinal pseudo-obstruction (CIPO) is a rare disorder that may be due to an underlying neuropathic disorder (involving the enteric nervous system or extrinsic nervous system), a myopathic disorder (involving the smooth muscle), or abnormality in the interstitial cell of Cajal (ICC). These can be secondary to neurologic, paraneoplastic, autoimmune, metabolic/endocrine, and infectious diseases. Therefore, they think that this could be caused by my rare neurological disorder. 

The prognosis to this illness is not good.  I was told that even with a transplant, the prognosis isn’t too good. The transplant will allow me to live longer a better life, but it definitely will not allow me to go back to living a completely “normal” life like a normal successful transplant usually would.  Yet, this is transplant is the only option that will save my life… even if it will only allow me to exist for a certain length of time. I may not have a “normal” life, but at least I will be able to LIVE longer than I am living now because without it, I will definitely be dead within months. 

Only a few transplant centers in the U.S. perform intestine and multivisceral transplants. Indiana University Health Transplant is the best place for me to have this transplant for multiple reasons.  IU Health performed the first isolated intestine transplant in Indiana in 2003 and the first multivisceral transplant the same year. Ranked number one in the nation by volume for intestinal transplant surgery in 2011, IU Health Transplant has unparalleled experience with both routine and complicated cases.  As of this year, only 35 multivisceral transplants were performed in the United States.  IU health was the leading hospital, as they had done the most by doing about 20 of the 37 transplants. They also had a 89% survival rate of 1 year.  So… it kinda is important to go to a place that is used to doing this transplant because they are accustomed more than any other hospital of to what can occur and what can go wrong. 

In addition, I need to go to a place that is able to handle me since I am extremely complicated.  Like I said before, I just don’t suffer from this intestinal and GI problem.  I suffer from a neurological problem, autonomic dysfunction, cardiac problem, a brain tumor, etc.  Therefore, I need to go to hospital that will be able to handle my complex nature.  It appears that there is no better place than to go to this hospital because overall, this hospital is very large and it is ranked #7 within the nation.  So… not only am I getting a terrific transplant team for my multivisceral organ transplantation, but I am also getting a terrific hospital overall.

I really need to be in the best place because the recovery of the transplant is really hard.  Not only is the operation extremely intensive, as it is 12 hours long and replacing all basically my entire abdominal cavity, but the recovery process is extremely difficult as well.  There is a very high (90 %) risk of rejection and infection in the months immediately after the transplantation. Daily blood tests with close clinical observation, including measuring the amount of fluid from the ileostomy, are important in the early post-operative phase. Three to four biopsies are initially taken once or twice a week from the transplanted bowel with the aid of a flexible endoscope via the ileostomy; should there be early signs of rejection, appropriate treatment can start immediately.

I also learned from the doctor that the head doctor in Nebraska that was notoriously known for that center to do the transplants wasn’t there anymore.  As a result, the center, which was living on the reputation as being the “largest” was no longer actually performing as many transplants as they once were.  In fact, they only did 2 transplants for the year whereas there was such a high number at Indiana.  I wasn’t told this when I spoke to Nebraska.  It is amazing what you find out when you speak to the “inside.”  So here where I thought I might be getting such a “great” hospital because it was considered the “largest” and such… it really was no longer.  They were living off the reputation that they had in the past and they didn’t tell me that the surgeon was no longer there and they no longer did as many transplants as they did before.  Therefore, why would I want to go to that hospital?  When I questioned Nebraska over this fact, they didn’t really have a response.

I also learned from the doctor in Indiana that I might have a problem with the new organs because of the high dose of meds that I am on.  I am on a very high dose of meds due to all the pain that I am currently experiencing and due to my other conditions.  The problem is that when I get the new organs, they aren’t going to be exposed to these drugs and therefore, when I take these meds… they probably won’t be able to handle it. 

This will make the transplant even more difficult for me because I won’t be able to have the pain management that really I need because the new organs wouldn’t be used to these pain drugs, which I am on now.  I am on a high dose now and therefore, I will probably need a high dose to manage the pain after the transplant.  However, since the new organs will never have been exposed to the drugs, it will be literally impossible to have that high dose.  So, I might have to suffer with the pain. 

Fortunately though, I am so small that I might not have to wait for an adult organ donor.  I am very small and therefore, I might be able to get away with a pediatric donor.  It will double my chances of getting a transplants faster because basically I will be able to get a transplant from either an adult or pediatric because of my size.  They think that a pediatric intestine and organ would be sufficient for me.  However, since those organs definitely wouldn’t have been exposed to any of the drugs that I am currently taking (especially the pain meds) it will complicate things even further because I definitely will have trouble managing the pain!  But at least I know that I will have the ability to get organs from either donor, which will hopefully shorten the length of time that I have to wait for an organ.  It is especially important because time is definitely of the essence… especially when I am deteriorating so fast. 

Time is definitely of the essence as well because as we wait longer and longer, I am getting worse.  As a result, the pain is getting worse as well and the pain drugs are having to be increased.  This is only going to make the transplant harder on me when I have it because the goal is to have as little of the pain drugs as possible because when I receive the transplant, I won’t be able to have these high-dose of pain medications that my brain and body is so very used to.  Therefore, the doctors are hoping that not only will I get the transplant right away so that I won’t deteriorate further or suffer more, but they are hoping that in the meantime the ketamine comas that I go for will allow me to go down on the pain drugs so that I won’t have to have such high doses.  Ketamine is an NMDA receptor and has a role in the treatment of opioid resistant or ‘pathological’ pain (central sensitization with hyperalgesia or allodynia, opioid induced hyperalgesia, neuropathic pain) rather than as an ‘analgesic’ in its own right. Although Ketamine may have more than one mechanism of action, the basis for using it to treat CRPS/RSDS may reside in its strong ability to block NMDA receptors. Experimental evidence suggests that a sufficiently intense or prolonged painful stimulus causes an extraordinary release of glutamate from peripheral nociceptive afferents onto dorsal horn neurons within the spinal cord. The glutamate released, in turn, stimulates NMDA receptors on second-order neurons that produce the phenomena of windup and central sensitization.  Hopefully the comas will maintain a level of Ketamine in the central nervous system long enough to reverse the effects of the sensitization process and associated pain.

However, Indiana is known for one of the faster turnaround times for receiving a transplant.  Research has shown hospitals that perform the greatest number of organ transplant procedures generally have higher success rates and better patient outcomes.  Perhaps that is why they have been so successful? In 2011, Indiana University Health Transplant ranked number one by volume for intestine/multivisceral transplants. The one-year patient survival rate was well above the national average and patients spent only an average of 1.7 months on the waiting list, compared to the 5.8-month national average.  That is really a HUGE difference, especially when you are as sick as me. 

Doctors are sometimes really scared to do anything on me because of how sick I am.  I mean… I am extremely fragile and only weigh in the 60s.  I have so many complicated medical condition and basically the slightest wrong move can EASILY kill me.  In fact, who even knows if I would even recover from an operation because I have no immune system and nothing to keep me going?  I have no reserves.  

However, after speaking to the doctor in Indiana, the doctor said that transplant is usually the last option because it is so risky, but it is something that needs to be done before it is too late and before I won’t be able to survive it.  He said, “There comes a time when someone has to pull the ‘trigger’ and go for this life-threatening, risky, dangerous, and radical transplant because if more time is waited upon, I will only die.” 

In addition, the doctor said that I really need this transplant more than ever because he said that I am wasting my time with anything else.  He said that with my condition, nothing is really going to work.  Whenever I went to other doctors, they were wanting to try other mechanisms such as Nasogastric tubes, J-tubes, G-tubes, TPN, gastric pacemakers, etc.  However, the doctor said that I am only wasting my time because there is no way that this is going to work.  The problem is that there is no motility of my GI system whatsoever.  Therefore, all these mechanisms can put the food and nutrients into my system, but there is going to be nothing to push them through. So, in the end, they are all going to fail.

One big problem with having the transplant at Indiana though is that they want their transplant candidates to be living within 4 hours of the transplant center before transplant.  This way when the call comes in that organs are available, you can get to the center RIGHT AWAY.  However, it would really be a hardship for me because that would mean my dad and I would have to relocate.  It would mean that my dad wouldn’t be able to work and therefore, no income would be able to come in.  Not only that, but my dad’s business would not be able to function for that length of time as well and it would probably end up closing up as well… so we wouldn’t even have anything to come back to afterwards.  As it is… we don’t know what we are going to do because we are going to have to stay in Indiana for awhile (about 2 months or so) after the transplant.  My dad won’t be able to work during this time and therefore, we don’t know how the business is going to survive.  Without him working, there is no work going out and no money being made.  Not only is there no money being made for the business, which will not allow the business bills to be paid, but it will also not allow us to pay our personal bills or bills for my medical treatment because we will not be having an income.  It will really be a disaster and we really don’t know how we are going to manage this.  We really have to figure this out because it is literally impossible for my dad to stay away from the business and not work for that length of time. Yet… it is impossible for my dad and I not to stay at the very least that length of time AFTER the transplant.  At the very least, I will need someone to stay with me post transplant and unfortunately, I don’t have the biggest family.  You really learn whom your true friends and family are when you come down with a real problem like this and therefore, we really don’t have anyone we can count on.  Plus… to have someone stay with me for this amount of time and help in this way, we are really asking a lot.

Luckily, the surgeon in Indiana has been willing for me to live at home pre-transplant.  Although transplant candidates are supposed to be living within 4 hours of the center, he said that he will allow me to live at home as long as I will be able to get to the hospital via a private plane when the transplant becomes available.  Everything will have to be set up and written out on paper so that it will all be in detailed writing and specifically laid out when we meet with the doctor in January for this to occur.  When organs become available, we can’t first be figuring out what to do.  Therefore, the doctor said that we can live at home and do this, as long as we have in fine detail and on paper the entire plan laid out so that we are all on the same page. 

Sounds like a great answer to a huge problem, right?  The only problem is that it is going to be extremely costly to do this because chances are the insurance will not pay for this flight.  I will have to find a way of raising funds because the trip to Indiana via a private plane will probably cost me about $12,000.  I don’t know how we are going to afford that.  But, I don’t know what other choice we are going to have because if we don’t do this, we will have to re-locate to Indiana, which I already said was a really bad option.  So, I really have to find a way to raise money and a way fast.  Otherwise I fear this transplant will not be able to occur and I fear I am going to die.

Without this transplant, I am definitely going to die within months.  This is my only chance of living.  So, I am really hoping that it will work out.  I am hoping that I make it to January because I am rapidly deteriorating, but “miracles” can happen.  After all, this is the holiday season and “miracles” are always possible and therefore, I am hoping a miracle is going to happen for me too. 

With the holidays being here, I am only hoping and praying that my holiday wishes come true.  I hope that I get my holiday miracle of either getting well or at least make it to January so I can get that transplant.  I am also hoping to receive the necessary funds so that I can be able to have the transplant because I desperately need help with the traveling expenses and living expenses while I am there.  I am also going to need the funds to help with the medical costs.  The insurance will pay for the multi-million dollar operation, but that is about it.  As for the post-op rejection drugs, I am on my own.  It will cost me about $1000 just for those drugs alone, and I of course can’t live without those drugs. 

Besides the funds needed for the transplant directly, I also need help paying for my medical treatment because the cost is so astronomical.  We can no longer pay for it and without further help, we fear that we might have to curtail it and make a lot of cuts that will really jeopardize my health even further.  I need help paying for medication, doctor bills, insurance, copayments, traveling expenses, etc. 

I am also going to need funds to help further save my life because I will need to have a ketamine coma out-of-the country after the transplant.  Even though I have ketamine comas in New York, the amount of ketamine I need to cure my neurological disease is not FDA approved and therefore, the only place to receive this amount is out-of-the country. It will cost me close to $100,000 to have this done.  In the meantime, I will also need to have a coma treatment in Florida, which will also be costly, as it will cost $20,000.  In Florida, I will be receiving more ketamine than I receive in New York, but it won’t be as much as I receive out of the United States.  This coma is very important because it can further save my life and further make the transplant successful because it will help the “neurological” part of me.  But… first thing first!

I feel much better and more confident with having the operation done at Indiana because I will be having two of the BEST surgeons working on me.  I will have not only have terrific transplant surgeons that are phenomenal in multivisceral organ transplants, but they are also interested in xenotransplantation.  This really fascinates me because this is probably the wave of the future and therefore, they are up and in the forefront of medicine.   With the limited supply of human organs available for transplant, efforts have led to xenotransplantation, or the implantation of living cells from another species. Xenotransplantation may one day fulfill a need for an organ when a human organ is not available, when a bridge organ is needed, or when animal cells may provide a unique benefit to patients.

So… I guess that is it.  I guess I told you everything.  I just hope that I make it to the New Year because it looks like 2013 will be a very busy year for me.  If all goes according to plan… I will be in Indiana in January and then I will receive the best BIRTHDAY gift ever, as my birthday is the beginning of February.  Hopefully I will receive the gift of LIFE, which will be the BEST gift anyone can ever ask for.  That is one gift for life.  It will really give me a second chance of life… a life that I really was robbed of and never really got to live! Yet… each day 19 people in the United States die waiting for an organ transplant and I hope not to be one of those statistics.  I guess it is just a waiting game for now!!!

Well… I guess I better get going.  I just wanted to update you on all that is happening.  Hopefully this is all going to work out.  Hoping for a brighter day tomorrow.  Hoping that 2013 will be a terrific year!  But… of course that won’t be possible without the help of others. So please help me whether it is by donating, spreading the word that I desperately need HELP, or even saying a prayer.  Remember… the power of prayer goes a long way!!  After all, it is said that many healing prayers can miraculously cure the sick. 

“A strong positive mental attitude will create more miracles than any wonder drug.”

–       Patricia Neal

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”

― Albert Einstein

“Miracles are like pimples, because once you start looking for them you find more than you ever dreamed you’d see.”

― Lemony Snicket

Love,

Fallon

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December 14, 2012

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Just figured that I would write because I had a little emergency today.  O my goodness… things are getting so very bad.  I am supposed to be leaving Monday for Nebraska.  Yet, I am only 2 days away and I don’t even know if I am going to make it there.  Plus… we don’t even know if that is the “smartest” thing to even do anymore.  So much has happened… especially within the past 24 hours.

I am writing because we never know what is going to happen anymore or where I will be. Things are touch and go now with me and to be quite frank with you… I really don’t think I am going to see the New Year.  I am hoping to even make it to Christmas. Dad keeps saying that I will make it and that they are not going to let me “die.”  To be quite frank with you… I am like living a tight rope right now and it is ready to snap any minute.  We even thought it was going to actually snap this morning.  We came so very close to going to the hospital this very morning.

 I really haven’t been feeling well.  I have been getting the weirdest pains.   However, we never know what to make of these pains because I am constantly in pain.  I am in pain 24 hours a day 7 days a week. In fact, I never get a minutes rest.  I am on so many painkillers including methadone, morphine, nucynta, dilaudid, etc. because of how much pain I am in.  They say that if “hell was a clinical medical condition… it would be considered my disease.”  I suffer from one of the most painful diseases out there, as I suffer from a rare and life-threatening neurological disease, autonomic dysfunction, and severe gastroparesis.  I also have other severe problems, but they probably aren’t as painful as these major problems.  For example, the brain tumor isn’t as painful… it is just there and causes major problems in my head and such because it is on the pituitary gland, which is the “master” gland in the body, which regulates everything. 

Anyway… as I was saying… I am used to having pain everywhere and there isn’t a day that goes by that I am not afflicted with pain.  That is why I go for ketamine comas as well, as I have had numerous other treatments, but they have all failed.  I really need an amount of ketamine that is not FDA approved in order to deal with the pain, but since it isn’t FDA approved and can only be done outside the country, I have to deal with getting an amount that isn’t really “sufficient” or enough to hold or maintain me.  Theoretically… if I would get this high dose of ketamine outside the country… I can be “cured” of this pain because it is an NMDA receptor and it would essentially be like “rebooting” a computer. I would be wiped free of pain. However, the procedure is very expensive and will cost me close to $100,000.  I am hoping to be able to have that procedure because not only will it cure me of this disabling and crippling pain, but it will also “cure” me of my life-threatening neurological condition as well.

But in the meantime, I will just have to deal with receiving the amount of ketamine that is permitted within the United States, which is only helpful or beneficial while I am “under” the ketamine.  Once I come out of the coma, I am kinda back to square one because it is so very painful.  However, I still undergo this risky coma procedure because I will do anything to get a little “break” from this agonizing pain.  You have no idea how bad this pain is and it is definitely worth undergoing this risky procedure to escape it… if only for a couple of hours.  Even though I undergo weekly ketamine comas, I am also hoping to undergo a more intensive coma in Florida (even though it isn’t as intensive as the coma out of the country, but more intensive than the one I receive in New York), but it will cost me over $20,000.  I desperately need help because I am one sick person.

I get the weirdest pains because of my illness.  My illness causes the weirdest problems that you would never expect because I suffer not only from a rare and life threatening neurological disease, but also because of autonomic dysfunction and severe gastroparesis.  I can have one pain one minute and another type of excruciating pain another minute.  It is like this disease has a “mind” of its own and if you “start” with it… you better watch out because it will pay you back twofold.  One minute I can be suffering from electrocuting pain.  Another minute it can be throbbing.  Yet another minute it can be spasms.  I receive every symptom of pain you can imagine including freezing, burning, stabbing, prickly pain, aching, pressure pains, sharp pains, throbbing pains, sharp pains, etc.  I get symptoms from these diseases that include basically everything under the sun, which include pain (often “burning” type), tenderness, and swelling of an extremity associated with varying degrees of sweating, warmth and/or coolness, flushing, discoloration, and shiny skin.  I also have extreme hypersensitivity, which means that the slightest touch or breeze can cause a pain so excruciating that it’s difficult even to comprehend let alone describe it.

My disease is the weirdest because not only does it give me this pain, but it also gives me so many other problems.  I get sores, vision problems, memory problems because I problems with short term memory (easily forget things they have been asked or are supposed to do.  I also tend to forget the topic of a conversation in the middle of having one), constipation, weakness, dizziness because nervous system that is controlled by the brain can influence everything in the body including your equilibrium (an unbalanced equilibrium can cause minor to severe dizziness which many times is escalated as a result of the meds), itchiness, joint stiffness, muscle atrophy, black-outs, and have twitching or spasms.  I also have differences in nail growth, hair growth, sweating and temperature.   The list goes on and on, but since I have severe autonomic dysfunction, it adds to these problems because it even makes it harder for my body to regulate these problems.

So… when I have a something occurring to me such as a pain, I never know if it is something to worry about or if it is just attributed to my disease.  I never know when to “worry” and go to the hospital or when to just sit back and just “wait it out.”  I suffer all the time and if I was to complain and go to the hospital over every pain I got, I would be living at the hospital.  I also hate going to the hospital when I get a pain because I don’t want to be known as the “boy who cries wolf” because when there is something to really worry about, then they won’t really treat me because they will astronomically think that it is “nothing” like it always has been.  So usually since I don’t want to be known as this “boy who cries wolf”… I stay at home and suffer.  That is what really scares me.  I get so many pains from my illness that I never know when it really is something to really worry about. 

Anyway, I have really been feeling bad lately.  I have been getting pains down my arms, my heart has been feeling funny, and so has my stomach.  I always have heart and stomach problems, but these have been out-of-the norm.  My heart has felt more fluttery than usual and when I breathe, it feels like there is fluid in my lungs… especially when I lay down.  It almost feels like when you have bronchitis or a bronchial cough.  You know that feeling when you breathe and you can hear all that mucous in your chest?  That is how I feel.  I have a problem with aspirating, so I just attributed it to that.

As for my stomach, my stomach hasn’t been doing well either.   My stomach is completely dead and so is my GI system.  That is why I need to go to Nebraska and Indiana.  I need to have a transplant of the stomach, small and large intestine, and pancreas.  I only weigh in the 60s.  However, my stomach has felt lately very hard and it won’t expand anymore constrict.  I can’t really explain it, but it just didn’t feel ‘right.’

I have also recently been to the doctor and was told that I need to have a certain IV treatment about twice a week in the hospital due to my severe gastroparesis, malabsorption, and illnesses.  My organs are shutting down and as a result, they are very inflamed.  The doctor said that I need to have this IV treatment since I am suffering from malabsorption because without it, my organs are getting further inflamed and shutting down even more.  So I was already aware of this matter. 

Well… enough with the history and I guess I should tell you what happened already!!!  I wasn’t feeling well during the night because my stomach was really hurting me. I was getting the worst stomach pains… worse than ever.  I get these pains every so often.  Even though my stomach hurts all the time, there are times when I get “flare-ups” worse than others.  During this time, I get this crippling pain in my stomach that all I can do is curl up in a ball and not move or talk.  It radiates from my stomach all the way up to my jaw and everything.  It can even mimic a heart attack.  I was getting this pain all night.  I was also feeling a little weird, as I felt like I was coming out of my body.

I had the doctor this morning, so my dad was picking me up to go to Manhattan.  As I proceeded to get ready, I was getting spasms in my abdomen and prickly feeling.  Even though I didn’t feel quite “right,” I didn’t really think that anything was really quite wrong or anything horrible was going to happen.  So… I just ignored the pains. Even in the car when we were going to the doctor and I was getting cramps and spasms then in my back by my right kidney, I still proceeded to ignore them.  I did tell my dad about it, but I still “ignored” it because I thought it would just “pass” and it was just the usual “pain” that I get from my illness.  However, deep down I had a feeling it was my kidneys and that they were shutting down or failing me.

However, everything really culminated when we were at the doctor’s office.  I really thought that I was in the best place when all this was happening.  I got so very sick that I honestly thought that I was going to “die.”  I never felt so horrible. I got such an attack… one of the worst I ever had gotten. Yet, when I got the attack and I was at the doctor’s office, I was like what better place can I be at because if something was to happen, at least I am at a doctor’s office.  At least a doctor can help save my life because I felt like I was going to die!

I also thought I was in the best place because not was I just at ANY doctor, but I was at my pain doctor.  So… I thought for sure that he would be able to give me something for the pain, especially since he does procedures in his office.  However, apparently I was wrong.  All the doctor wanted to do was call an ambulance when I was so very sick and bring me to the hospital.  You would think he would be able to help me or give me something for the pain at the very least, but instead… all he said was “What do you think this is… a hospital?” 

I couldn’t believe it.  He had absolutely nothing and he couldn’t really do anything to help me.  The doctor and my dad brought me to lay down because I was suffering so much.  I was also breaking into cold sweats and therefore, they took off basically all my clothing because my autonomic dysfunction was also getting triggered off.  The pain was off the scale.  All I could do was moan and groan.  Nothing was helping. 

I never saw my dad or the doctor freak out so much.  I was even freaked out. Usually I am the “calm” one. Yet… I never had pain like I had like this.  I saw it in my dad though… he was more nervous than ever because he never saw me like this!  I was trying anything and everything to try to deal with the pain and to try to “simmer” it down.  When I asked the doctor for anything, he had nothing.  Like I said before… I would expect him to have at least SOMETHING because he was a pain doctor and he did procedures, but he had absolutely nothing. The only thing he said he had was Senokot, which was something that I definitely didn’t need.

When I asked for something to eat such as crackers to see if possibly I maybe had too much “acid” in my stomach, he didn’t even have that.  But you know what he gave me instead?  He was like “we have pretzels!”  He told me that they were from Halloween, but that he had them yesterday and that they were still good.  At the state that I was in… did he think I cared if they were stale or not… or where they were from? 

The doctor really wanted to call an ambulance to bring me to the hospital.  However, we all knew that the hospital wasn’t really probably the BEST place for me because it would be a NEW YORK hospital and the best places for me in this condition is out-of-state like in California, Nebraska, or even Indiana that specialize in my condition.  Also, we knew that if I would go to the hospital today… there would be no way that I would be going to Nebraska on Monday, and we knew how important that was too.  We knew that the specialists were in Nebraska and how important it was to get there… especially since we had the transplant there.  So… we really wanted to avoid the hospital at all costs.  But the doctor thought possibly that I needed to be “decompressed” because my GI system is so “dead.”

I was in so much pain that even when the doctor was going through my medications to prescribe me, I didn’t even care what he was doing. I really needed him to increase the medications because they were no longer holding me.  I have been maxing out on all my medications and I have been climbing the walls.  Therefore, I really wanted to talk to him today about giving me something else so that I can try to live with the pain because the pain has become unimaginable.  However, when he was trying to do this… I just couldn’t even focus. I was in too much pain.  I was like just give me “whatever!”  So… since I have been on everything already and there really wasn’t much else to give me… he ended up doubling up and raising my morphine dose.  Hopefully that will do the trick because I am literally climbing the walls.   

I really thought I wasn’t going to make it.  Nothing was squelching the pain.  I couldn’t move.  But, of course I couldn’t stay at the doctor’s office forever.  I had a choice to either leave to go home or we were going to have to head to the hospital.  I was so hot from what was going on that I didn’t even want to put on my jacket and such.  I was also in so much pain that I didn’t have the patience or anything to “wait” around. I wanted to get out of there and into the car so that we could either get home or to the hospital.  So as my dad was trying to get everything together such as my gloves and glasses and such because we kinda threw them everywhere when they undressed me because I was suffering so much, I was like “just throw them anywhere and lets go.”

Dad was so scared that something was going to happen to me.  He kept asking me every two seconds as we were walking to the car if I was “ok.”  It was hard enough to walk to the car… I barely could speak.  Once in the car, I curled up on the seat and prayed that I would make it home.  My dad also stopped down the block to pick up tums and make me a cup of tea to see if possibly that would help.  Of course nothing was helping though.  All the way home from Manhattan, dad kept poking me to make sure I was still “alive.”

When we arrived home, I was too weak to get out of the car.  Dad carried me into the house and placed me on the couch.  I curled up on the couch and prayed that I would be ok.  I never felt as bad as I did today. 

For me to even contemplate going to the hospital today, it had to be really bad. I really didn’t know what to do.  Yet, I knew that if I went to the hospital, I wouldn’t make it to Nebraska, so I really wanted to try to hold out as long as possible.

I did speak to the doctors though later on and it was confirmed that my organs are failing and shutting down.  It is getting really bad that if something isn’t done and done soon… it is going to result in disaster.  We can’t wait any longer or “hope” that something is going to turnaround or come about.  My time is basically all ran out.  The sand in the hourglass is done.  We have known that I am sick, that I was dying and that time was of the essence, but we were hoping that we would be able to hold out and wait to raise money because we couldn’t afford the necessary treatment to save my life based on our own efforts.  However, we now found out that we can’t wait any longer.  If treatment isn’t sought now… I am basically “done.”

I am really scared because I know that we don’t have the money to get me the treatment that I need.  I know how hard my family has tried to afford me treatment and how much they wish that they could do more for me.  But I know that it just isn’t possible.  I just wish that I could get the support and donations that I desperately need.  I am totally grateful and appreciative of the donation and support that I have already received, but they are far from what is needed.  I am so very scared because I know how desperately I need this treatment and I know that it just isn’t’ possible because we can’t afford it.  I know how I pleaded in the past with people by posting things on Facebook, making the website, making posters, contacting the media, etc. but nothing has been effective.  I am so scared because I don’t have the time to wait around anymore to see if anything will come about or to plead anymore for help.  I have come to realize that no matter what I do… I don’t think there is going to be any further support or donations.  I desperately needed the media to cover me because that would have been the “secret” to all this.  This way it would be known to the public and so many people would hear of my story.  However, I guess it is like the saying goes… “It isn’t what you know… it is who you know.”  It just bugs me because I see all this coverage for other people on TV and stuff and when I try to get help for my illness and so that I can live to see my birthday or to have a “life,” it just isn’t possible. 

So… hopefully I will be able to make it to Nebraska on Monday.  Hopefully I will not end up in the hospital or something worse won’t occur.  However, we have been thinking that maybe going to Nebraska isn’t the “right” answer.

We did speak to Indiana today and we are scheduled to go to Indiana on January 20th.  That is a very long time away, but with the holidays… we really don’t have a choice.  Since I am going to Indiana for the transplant, there are so many tests and evaluations to be done.  I basically need to have every test and every evaluation you can imagine, so I basically need to see every single department. So the earliest that it can be arranged altogether so I don’t have to travel back and forth (I am too weak and can’t afford it), would be that time. 

Even though we are supposed to be going to Nebraska on Monday for the transplant evaluation and to “list,” I am not sure that is the BEST place for me.  They are known for intestinal transplants, but I need more than that.  I need a multi-organ visceral transplant, which includes a stomach, small and large intestine, and pancreas.  The transplant that I need is extremely rare and risky.  It runs the highest rejection rate of all transplants and I want to be in the best hands.  Plus… I have so many other problems that I don’t know if Nebraska can handle me.  I think possibly Indiana might be better able to handle me and might be a better hospital since they might have better depts. In the other areas other than the intestinal areas.  Plus… they have been doing multi-organ transplants since 2003 and have done about 50 of them since. 

So we don’t know if we should possibly put all out eggs in that basket of Indiana and wait for them and use the money that we were going to spend on Nebraska and go to California instead.  Hands down… California is the best place for me to have treatment and the transplant.  They have the best teams there, as their doctors are the absolute best.  We never received as good as care as we did there.  But, unfortunately, the insurance company won’t pay for me to have the transplant there.  However, they will pay for me to have “treatment” there to hopefully buy time.  But that is only a penny in the bigger multi million-dollar picture.

We were thinking of using the money that we were going to put towards Nebraska and go to California to try to “buy” time until Indiana.  We were in California before and had to leave because we ran out of money.  However, we were supposed to return because they wanted to put me into a coma and try giving me the tubes again.  Even though my body did reject the treatments and surgeries that they did when I was there the last time… they wanted to try putting me into a coma this time so essentially my body would be “comatose” and unable to “reject” anything. 

However, that would mean that we would have to cancel Nebraska and putting all our eggs in Indiana. It also means that we would have to wait to the end of January for the appointment and who knows if I have that time to wait.  Also, if things don’t work out with Indiana, then what do I do because I won’t have a backup since Nebraska won’t be in the picture and that is the ONLY other place the insurance company will pay for the transplant.  After all, Indiana does also want us to live near them prior to the transplant, which will be a hardship.  There are a lot of factors and we don’t know if the transplant in Indiana will be possible 100%.  So is it worth risking it and putting all our eggs in that basket and going to California to try to “buy” time instead?

In addition, when it rains it pours.  My dad’s technician isn’t working now too.  So… when we go away, no one in the business will be working.  This isn’t good news because at least when we went away before, at least SOME work was going out even though it was minimal.  Now… no work will be going out, which means no income coming in.  I don’t know what we are going to do.  I am so very scared because I know how desperately my dad needs to work and bring in the work because without it… there is no money to pay the bills.  If something was to happen to the business because of me, I would never forgive myself.

Well… I guess I have a lot to decide on.  I am really hoping still that I get that “miracle” of getting well, or I am hoping to at least get some further support and donations from people for the holidays.  I really desperately don’t want to die.  I have so much to live for and my time on earth is not done yet.  I was robbed of so much in life, and there is so much that I want to still do. I really want to be able to be able to have a get married, have a family, become a doctor so that I can help others, etc. 

One thing that really stinks about this disease is that this disease really took away my memory. I don’t really remember my life a lot before this illness. My mom and I were watching the 12-12-12 concert for the SANDY storm and we were talking about how she misses me playing the violin. She told me that out of everything… she really misses me playing it the most. She told me how beautifully I used to play and how it was the only thing that used to relax my dad and such.  She said that I was extremely outstanding on it and such. I really have no memory of really playing. But I must have been good because I was concert Mistress and received a perfect score on the highest level at NYSSMA.  She told me how she wishes I would play it again, but that is just another thing that this disease really has taken from me.  My fingers among other things won’t work due to this stupid illness.

There is so much I still want to do, but I know how it isn’t going to be possible without getting either a “miracle” or further treatment.  The cost of my treatment is so astronomical.  My parents have paid for it for so long, but it has been so costly that my parents can no longer pay for it anymore.  We have made so many “cuts,” but even with those cuts, we can no longer pay for it.  It stinks that I can’t receive the treatment that I need to try to save my life.  Not only do I need this transplant, but I need so many other types of treatment that requires money.  I need very costly surgeries, medications, visits to doctors, traveling expenses, etc.  As it is, the cost of copayments alone (and that is with the insurance paying) is over $25,000 a year.  I still then have to worry about paying for the appointments, medications, traveling expenses, surgeries, etc. that are not covered by the insurances. I can’t just have a “cheap” health plan either. Most of the top specialists either don’t take insurance or I need a very expensive health insurance plan that would be able to cover my needs.  So… I get hit under the belt all the time with bills.  The bills have piled up so much that we can’t even afford to pay them anymore.  It definitely doesn’t help when my dad has to take so much time away from working because he has to take me to appointments and such.  Multiple trips to and from the doctors (Especially since they aren’t local) are taxing on us, so much so we have been forced to not seek all the needed or receive all the necessary treatments due to lack of funds. When my dad doesn’t work, no money is made and the business also suffers.  It is very scary when you don’t have sufficient funds to rely on. 

Even with the insurance paying for the transplant,  I would still need plenty of support from others in order to actually go for it.  But, I would definitely need the insurance company to at the very least pay for the transplant because we are talking about over a million dollar operation.  However, I still need so much help to continue treatment and to receive the transplant because I still have to worry about the copayments, insurance cost, medications, doctor appointments, traveling expenses, relocation expenses, etc.  The transplant is only one part of the bigger picture, but it is definitely something that has to be taken care of by the insurance company in order for it to happen.

Well… I better get going.  I am not feeling well.  I just wanted to update you on what is going on.  I guess when everything is decided upon, I will let you know what is going on.  In the meantime, I have been trying to keep myself busy by taking pictures of my animals.  They have been my best friends and only companions through this entire illness.  In fact, my dog’s birthday was the other day. I bought him a stack of money stuff animal because my dog just loves money.  He always goes into pocketbooks and steals money out of it.  I don’t know why he is attracted to money so much, but now he has his own stash.  So I have been working on “photoshopping” my pictures and learning different techniques that can be used.  I learned how to make my pictures look like illustrations, cartoons, etc.  It has been keeping me busy at the very least.

For the holidays, my mom did buy me a shirt, but unfortunately it doesn’t fit.  It stinks that I am so very small.  It was gorgeous though. 

I also bought my mom a friendship bracelet.  It wasn’t anything major because it was made out of “string.”  However, it is just a little something to show how “special” she is to me.  It has a heart on it and everything.  This way she and I both can have one.  Even though she may not always be with me… especially when I travel because she can never come with me… at least she can always have me with her and I can have her with me as well.  We both can have each other’s heart on our wrists.  I thought it was just a little something that would be nice to have.  Even though it was made out of string, I thought it was “special.”  You know?

As of right now… we are headed to Nebraska on Monday.  So… I just gotta hang on until then.  It is only a few days away.  I made it this long… I can make it a few more. Hopefully the double morphine will do something.   I just hope that I see the New Year, which I am really scared that I won’t… especially if I don’t receive help from other people because I really need treatment… treatment that I can’t afford.

Well… have a Happy Holiday.  Talk to you soon!!

Love,

Fallon

 

 

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December 11, 2012

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Hey-

I figured that I would write a short little something because got updated news and figured I would let you know what is going on.  Plus… with this updated news, of course things aren’t too good and therefore… I am not in the happiest of moods.  Things are kinda not on the “upbeat”… but then again when are they?  But… I figured that maybe by writing it all out things can get sorted through and I can actually start to maybe feel better.

I guess I should start with the BIG news.  I got the news from the Cleveland Clinic.  It appears that it is a “no go” to going to the Cleveland Clinic for the transplant.  My insurance company will not cover me to go there whatsoever.  I kinda had a feeling that they wouldn’t, but I was hoping deep down that they would because the Cleveland Clinic is considered one of the best hospitals in the country.  Plus, the transplant surgeon that I was seeing there was supposed to have been doing the transplant that I needed the longest and has supposedly done the most in the world.  With the transplant that I need, I really need to go to the best because it is so rare and risky.  It is rarely done and it is considered the most dangerous transplant because it has the highest rejection rate of all transplants.  In fact, only 6 hospitals in the entire country actually do this transplant because of how dangerous and complicated it is.  I need a multi-organ visceral transplant that incorporates basically getting everything new in my abdomen.  I need a new stomach, small and large intestine, and pancreas.  However, not only do I need this transplant, but I suffer from so many other parts to my illness that I need to go to a hospital that will be able to really manage those parts as well. 

I am not just suffering from this Gastroparesis and in need of this transplant.  I suffer from a whole host of other problems and therefore, I need to go to a hospital that is able to manage me because I am extremely complicated.  In fact, most doctors don’t realize how complicated I am until they see me and then they realize that they are truly in over their heads.  When I went to the hospital in California, which was the Stanford Hospital and one of the best hospitals in the country, I had the doctors literally running all over the place because I had them so very nervous with what was going on.  They said to us that they were seeing things with me that they never have seen in their life before. 

I am just one rare case.  Doctors don’t really see cases like me.  When I go to the hospital, I am like on “display” because everyone wants to see me because they won’t probably ever get to see someone like me again.  I am a real “case” for them and a real “challenge” for them.  I am telling you… the person who actually “helps” me or can “cure” me really will have it made for themselves.  I think that is partially why doctors are so hesitant to give me up at times.  I think that even though doctors do want to do “good,” I think that they are in it sometimes for themselves and know that if they actually “help” me or something… they will have it “made” for themselves.  I am sure that even though that they are wanting to help me, I am sure that they are thinking of the “publicity,” fame, and journals in the back of their head.  But I don’t care as long as they cure me. 

I am one complicated case because not only do I suffer from GI problems, but I suffer from so many other problems as well.  I have a neurological illness that affects everything on the sympathetic nervous system. I also have severe autonomic dysfunction.  As a result, essentially everything in my body is affected because everything, including every organ, relies on the nervous system.  That is why my digestive system is so very bad.  My digestive system is essentially dead and I have no absorption whatsoever. Nothing passes through my stomach or intestines. I am constantly vomiting and constantly producing nothing but mucous as stool, which I have blood in.  I also have circulatory problems, cardiac problems, kidney problems, etc.  I also change colors.  This disease is also extremely painful and I never get a minutes rest.  You can’t imagine the pain that accompanies this disease.  It is said to be the worst pain that there is and the doctors have even stated, “If Hell was a clinical medical condition, it would be known as my disease.”  In addition, I also suffer from a pituitary tumor. 

This disease is spreading like a weed and I need desperate help.  I am rapidly deteriorating and unless “help” is done soon, I fear that I won’t make it much longer.  I was already told to enjoy these holidays because unless a “miracle” is done, these are probably going to be my last holidays.  I am so very sick and there really isn’t any room for me to get any sicker.  I weigh so very little, as I only weigh in the 60s.  My bloods are really low, and my heart can literally have an arrhythmia or very easily go into cardiac arrest very easily.  I was already told that if I was a “male,” I would already be dead because they can’t live at the levels, especially the BMI, that I am at.  Luckily, females can live at a little lower level than males and therefore, I am able to live a bit longer.  However, I am already borderline with those levels as well, as the lowest levels females can live is at a 12 and my level is 12 .2.  My life is like walking on a tightrope and it is ready to snap already.  This disease pretty well runs my life. I get out occasionally, but sometimes it’ll be two weeks at a time that I won’t leave the house.

The cost of my treatment is so astronomical.  My parents have paid for it for so long, but it has been so costly that my parents can no longer pay for it anymore.  We have made so many “cuts,” but even with those cuts, we can no longer pay for it.  It stinks that I can’t receive the treatment that I need to try to save my life.  Not only do I need this transplant, but I need so many other types of treatment that requires money.  I need very costly surgeries, medications, visits to doctors, traveling expenses, etc.  As it is, the cost of copayments alone (and that is with the insurance paying) is over $25,000 a year.  I still then have to worry about paying for the appointments, medications, traveling expenses, surgeries, etc. that are not covered by the insurances.  I also have to worry about the actual cost of the health insurance as well because I can’t just have a “cheap” plan either. Due to the rareness of my illness and how complicated it is, I have to seek the help of top specialists.  Therefore, most of the top specialists either don’t take insurance or I need a very expensive health insurance plan that would be able to cover my needs.  So… I get hit under the belt all the time with bills.  The bills have piled up so much that we can’t even afford to pay them anymore.  It definitely doesn’t help when my dad has to take so much time away from working because he has to take me to appointments and such.  Multiple trips to and from the doctors (Especially since they aren’t local) are taxing on us, so much so we have been forced to not seek all the needed or receive all the necessary treatments due to lack of funds. When my dad doesn’t work, no money is made and the business also suffers.  It is very scary when you don’t have sufficient funds to rely on. 

Even with the insurance paying for the transplant,  I would still need plenty of support from others in order to actually go for it.  But, I would definitely need the insurance company to at the very least pay for the transplant because we are talking about over a million dollar operation.  However, I still need so much help to continue treatment and to receive the transplant because I still have to worry about the copayments, insurance cost, medications, doctor appointments, traveling expenses, relocation expenses, etc.  The transplant is only one part of the bigger picture, but it is definitely something that has to be taken care of by the insurance company in order for it to happen.

I really would have liked to have the transplant in California because that was the best place for me to have it. They had all the teams that I needed in order to handle me.  All the doctors were terrific and I was never cared for better than when I was there.  But, unfortunately the insurance company refuses to pay for me to have it there.  The insurance company will only pay for me to have it in Nebraska or in Indiana.

I really wanted to have the transplant in Cleveland because there was a doctor there that was supposed to have done the most transplants in the world of my kind.  Like I said before, my transplant is the most dangerous and therefore, I really wanted to go to the best.  This doctor brought the 5-year survival rate from 40% to 60%.  So… it really is a big deal.  When you go for a surgery like this… you really want to have the best.  However, I was told that the insurance company won’t cover me. 

Gosh… the insurance company wanted to make sure that I certainly knew that they wouldn’t cover me at Cleveland and would only cover me at Nebraska and Indiana because not only did they tell Cleveland that I wasn’t covered, but after speaking to Cleveland, the insurance company personally called me and told me the same thing.  They then went further and told me that they “already said that the ONLY place I can have the transplant is in Nebraska and Indiana.”  However, I did explain to them how Nebraska isn’t really “known” for the transplant that I really need, but they didn’t care.  The fact that Nebraska said that they “can” do and “will” do it… that was enough for them.  They didn’t care if it was the “best” place for me; they just cared that they COULD do it. 

Nebraska is known to be the “largest” center for intestinal transplants.  However, I don’t really need an intestinal transplant.  I go far beyond that.  I need a multi-organ visceral transplant, which includes also getting  stomach, large intestine, and pancreas.  This center really just transplants the small intestine and pancreas at the most.  But, since the center did say that they would do it on me, the insurance company is saying that I need to go there.  I just can’t understand how they rather me go to a hospital that not as “good” in the transplant that I need.  Gosh… money really does RULE the world.

So… I have no choice but to go to Nebraska and Indiana because the insurance company isn’t budging.  However, both those places have their problems.  We really don’t have the money to go to both places, as we don’t really have the money to go to one. I don’t even have the time or the physical capacity to go to both either because I am so rapidly deteriorating.  However, after speaking to both, we have no other possibility but to go to both because Indiana can’t see us til the second week of January and we don’t know if I will make it that long.  Therefore, we have to do something in the meantime as well, as we are supposed to be leaving on Monday for Nebraska.  So, we really have to find a way of coming up with the funds as well so we will be able to go to both places.  In addition, we have to go to both places because each of these places have downfalls and these downfalls might really compromise me from being able to “list” and have the transplant there.  Therefore, we really need to go to both places so we can cover both bases.

Out of both hospitals, the best place for me is probably the hospital in Indiana.  They have been doing the Multi-organ transplant since 2003 and have done about 50 of them since.  They are also probably the hospital that would better be able to “handle” me than Nebraska because of how complicated I am.  Even though Nebraska is considered the “largest” center, it doesn’t mean that it is the “best.”  Plus… just because the intestinal part might be “good,” it doesn’t mean that the rest of the departments are so great.  The hospital in Indiana seem like all their departments are ranked much higher and therefore they will be able to handle all my complex problems better than Nebraska, especially if a complication should arise. 

IU Health is the nation’s leader in this rare, but highly successful surgery.  The surgeon, Dr. Vianna, compares the procedure to rehabbing a car.  Replacing everything ensures it’ll get fixed.  The doctor is like replacing my “motor.”  Dr. Vianna even said that he thinks that this this innovation in surgery may have saved the innovator of Apple, Steve Jobs.

IU Health Transplant is the largest, most comprehensive center of its kind in the region and the fourth largest by volume in the U.S. Indiana also seems like a better hospital overall because of rapid rate I would hopefully receive a transplant.  The transplant turnaround is far faster than the 1.6-month average wait time for a multi-visceral transplant at the IU transplant facility, which is much faster than the 6.1-month national average.  In 2011, IU Health Transplant ranked number one by volume for intestine/multivisceral transplants. In addition, our one-year patient survival rate is well above the national average.  The national one-year survival rate today is 75 percent, though IU Health’s rate is roughly 85 percent.  On top of that, IU Health’s wait time for organs is just 40 days, compared to the national average of six months, according to the Organ Procurement and Transplantation Network

However, one big downfall for Indiana is that they will want me to live within 4 hours of the hospital until I get the transplant.  There really is no known date when you will get a transplant and therefore, it will mean that we won’t know how long I will have to live there beforehand.  If I am going to have to stay there, it will also mean that my father wouldn’t be able to work and therefore, we don’t know how we are going to pay the bills and get money.  So… that is one major problem.  However, it is also a lot closer than Nebraska, so if there was an emergency, we can get there much faster.  Dad can put me in car and we can drive there.  It might take like 12 hours to get there, but we would never be able to drive to the other hospitals.  In addition, whereas if there was an emergency I would have to be heliported to Hopkins of there was an emergency because Nebraska and California are too far, I probably could be heliported to Indiana because it is much closer. 

Like I said though, the only bad part about going to Indiana is that I will have to relocate before the transplant.  Once I “list” on the transplant list, they expect me to relocate and be within 4 hours of the hospital.  That is a big issue because that means that my dad won’t be able to work at all.  When I spoke to them, I did ask if I could remain at home and fly to them on a “private” plane when I get the call.  I know it would be “costly” to do this because the cost of a “private” plane is expensive, but it probably would be a lot easier and cheaper than relocating to Indiana.  It would probably be a lot more doable because I don’t honestly know how I am going to be able to move there for so long and have my dad out-of-work.  With him not working, how are we going to survive with no income?  How is the business going to survive?  I just don’t think it will. As it is, I don’t know how all this is going to happen after the transplant because I will have to remain there for about 2-3 months.  If I have to stay there also beforehand, it is going to be impossible.  So, I really hope that they will allow me to live at home til I get the transplant because who knows how long it will be til I receive it.  It could be a week or it could be 2 months.  I just really have to worry about paying for the plane. 

But, they said I would have to discuss all this with the surgeon.  They said that they normally don’t allow this and usually have all the candidates living within 4 hours.  However, they did say that they are trialing it out right now with one person living at home.  I didn’t ask though where she was living.  So, maybe they will also let me do the same.  That is one good part of Nebraska because at the very least, they will allow me to live supposedly at home until I receive the transplant and then I will have to fly immediately there by “private” plane.  So… that is just another cost I will have to worry about.

I really need to get to Indiana, but unfortunately there is so much testing and evaluation that goes into going for the transplant in order to get “clearance” and to be able to be “listed” that in order to get all the needed appointments, the soonest that they all can be arranged is the first or second week of January because of the holidays and such.  They have to have all the appointments scheduled together so that I make one trip there and everything is done at that time because I can’t afford to travel back and forth because of the finances and because of the toll it takes on my body.  So, the soonest this will all occur will be the first or second week of January.  Hopefully I will be able to make it this long.  But, at least when I leave there afterwards, I will be all done with all the testing needed and then I will just have to “list” and then worry about the “relocating” part.

They have such thorough testing to go through.  When you get a transplant, especially this multi-organ transplant, they want every test you can imagine under the sun.  They two most difficult appointments that they have to arrange are the cardiac and psychiatric ones because you need clearance from both.  They need clearance in every area that you can imagine.  I even need to have dental clearance.  They also mentioned that I needed to have a colonoscopy, but when I told them that I couldn’t really have that performed because no doctors have really been able to do it despite all the attempts to do so in the past, they said it would be ok as long as the doctors wrote a letter explaining why it couldn’t be done.  I can’t believe all that is needed in order to have the transplant, but it is a relief to know that when I leave there, everything will basically be done.

Since the appointment with Indiana won’t be til January and they also really want me to “relocate” beforehand, which will be a great hardship, we have no choice but to check out also Nebraska.  At least Nebraska will let me live supposedly at home til the transplant and this way my dad will be able to work and bring in an income during this time.  We have so many bills to pay as it is, as we are in over our head as it is, but without working… I don’t know how we would survive.  Also, I am rapidly deteriorating and time is really of the essence.  So… We are headed to Nebraska just to cover all bases, as I am weakening every day.  I can barely get off the couch nowadays and I even hold in going to the bathroom in order to minimize the amount of times that I have to get up.

I am supposed to be leaving Monday for Nebraska.  I am so very nervous because I don’t know what to expect.  I know how desperately we need something to work out because I know how severely ill I am.  I know that unless something “good” happens or a “miracle” happens, I probably won’t be here next holidays.  I am really scared for the transplant. I know that I need it, but the concept scares the Hell out of me.  They’re taking all the organs out of me and putting all new in, so I am not sure what the outcome is going to be.   I also hate to think that I will be living waiting for the phone to ring to find out that someone died to give me a second chance at life. 

I am getting really bad and I know that I can die any day.  The pain that is occurring has really been horrible lately.  I have been maxing out on all my medications, but they haven’t really done much.  I wish there was something that could be done to “knock” me out.  I do go into ketamine comas, but the amount of ketamine that I require is far too great than is FDA approved.  Therefore, I need to go out-of-the country to get the needed amount of ketamine, which will be additional funds. It will also be costly, as it will be close to 100,000.  But in the meantime, I have been dealing with getting weekly ketamine comas to try to keep the disease under “control” to some extent.  Even though I know that these comas won’t cure me, we are hoping that they will at least “contain” the disease as much as possible since it is rapidly spreading.  Plus, at least I get a little break from the pain that is occurring when I am “under.”  The pain is so bad that I already have told my dad that he has to put me in a “ketamine coma” and not wake me up til they find a cure.

I am progressively getting worse.  I know that (death) can happen, but I have come to terms with it.  It is a part of my life, and it is reality for me. Some days it is harder to deal with than other days. Yet, I am continuing to fight and push on.  I push on because I know how important it is to my dad and family. I know that if something happened to me, my dad would never survive. 

My dad does anything to keep me going.  He would do anything and everything to get me well, and I know it kills him that he can’t get me well.  He constantly tries to bribe me so that I continue to fight.  He already told me that if something happened to me, he wouldn’t take care of himself.  He told me that one day I will hear “Man coming up to heaven… gotta open up the gates wider in order to get him up!”  Dad said that “I will know it is him because he is not going to watch himself if something happens to me because he is going to eat himself to death!” I know it must be horrible for my dad to watch me go through this. 

So… my dad and I are off to Nebraska on Monday.  It is going to be some trip.  We are literally going to freeze out tooshes off.  I saw on the weather today that it was only 6 degrees today.  Ouch.  My dad said that he isn’t going to be “cold,” but we will see.  I am going to bundle up like an Eskimo.

As for the holidays, I hope to make it back for Christmas.  I don’t know if I will be back for it though.  As a result, we have been celebrating the holidays now. We also have been celebrating the holidays because we celebrate Chanukah as well.  My brother bought me this huge 3-foot bear that I absolutely love.  I have him in bed with me to lay with me.  He is so comfy.  He matches my littler bear that my mom bought me to bring to Nebraska since she can’t come with me.  Both bears are in pink footies!  I am including a picture to show you.  It is adorable to see all three of us in bed together.  We already checked into how to get the big bear to Nebraska or Indiana when we go there because I want to bring it with me.  It is so big that if I brought it on the plane, I would have to buy it a seat.  Therefore, I am probably going to have to ship it. 

Well… I am going to get going.  I am not doing so well and I have to rest.  Have a happy holiday. Hoping that tomorrow will be a better day.  Even though I know it probably won’t be, I can hope… right?  Now that it is the holiday season… I am hoping that I get that special present of “getting well.”  Happy Hanukkah!!  When I find any new info… I will let you know.

Love,

Fallon

 

 

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December 8, 2012

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Hey-

 Just figured I would write a short blog because some stuff has been happening and I am also awake tonight living in pain like usual.  I figured that perhaps writing might sought through some of the issues that I am having, as well as perhaps take my mind off of the gnawing pain that just won’t leave me.  I need some kind of distraction to help with this endless pain… so I figured why not just write a little!

 Things are not going too well for me. I am suffering a lot!  The pain is just unbearable and it is getting worse.  I can barely get off the couch and the nights are just agonizing.  I can’t even get a minutes rest because the pain is unavoidable.  No matter what I do… the pain doesn’t stop!!! I even took more meds than usual and it still doesn’t end!! Why can’t I ever get a break!! Thought for sure I would at the very least get some REST. I can’t understand it… isn’t there anything that will knock this illness out?? It isn’t like I am taking “baby” stuff either. I suffer 24 hours a day 7 days a week… don’t I deserve at least one night’s rest?

 I am deteriorating so rapidly.  I told you in the last blog about how I went to the kidney doctor and how my organs are failing. I also told you how I am supposed to go to the hospital now at least twice a week because I need IV treatment in order to stay hydrated and such because my body is just not “absorbing” anything anymore.  My organs are just shutting down and there is no stopping them.  There is nothing that I can do to really “help” them.

 My organs are getting worse and worse.  Even my stomach on the last x-ray is more distended than usual.  Sometimes I wonder… why bother looking at an x-ray or going for another test because it is only “bad news” or another disappointment.  Do I really need to know how bad things are getting? 

 I recently went for blood work and like always… my bloods have fallen.  I just don’t know how much more they can fall and my body can survive. It is literally hanging on by a thread.  I can so easily have an arrhythmia or even go into cardiac arrest.  I am also having a problem clotting.  My bloods are all off the chart.  It is amazing I am still surviving the way that they are.

 I really need to get HELP and help fast. However, the only places to get help are not locally and therefore, we are having a HARD time affording it.  Gosh… it is so unfair that living depends so much on money.  Why does my treatment have to cost so much money?  I don’t blame my family because they can’t afford it!  They have done plenty all throughout the years.  I knew eventually that the well would run dry, but it just stinks that I can’t get the life-saving and essential treatment that I need because I don’t have the funds to do so.  It is so unfair that everything comes down to the dollar.  I sometimes wonder what this world would be like if “money” didn’t exist. 

 I have tried countless means to raise funds because I know that is my only hope in receiving the necessary treatment to save my life.  However, even though I have tried many times, they have all not really worked out.  I really need the media to pick up on my story because I need help desperately.  Yet… every time I write or try to contact the media (talk shows, news programs, newspapers, etc.), I get pushed aside.  I know the story goes “it isn’t what you know, it is who you know,” but it is so unfair because I need desperate help. I am literally running out of time and if I don’t get help quick or a “miracle” doesn’t happen soon… I am not going to make it much longer.  It stinks to see all these other stories of other people featured and I can’t get my story to have the attention that it really deserves.  I am literally watching my life disappear and my family and I are watching me deteriorate at the seams.  Don’t they realize how difficult it is to watch someone that they love die a painful death all because they can’t get the “help” that could prevent this from occurring?  I only wish that something could be done to correct this issue. 

 I know that the only way of receiving the essential treatment that I require is by getting the support and donations from others.  However, I know that is only possible if people become knowledgeable about my condition.  However, since I am having a hard time getting it in the media, I am hoping that through this my website and Facebook and word of mouth that people can become notified of how desperate I need their help.  After all, the slightest amount of money (even $1) makes the hugest difference and is much appreciative. 

 Not only do I need the support in donations from people, but I also need the support in prayers from them as well.  Even if people can’t afford to give me even a $1, I at least hope that they can pray for me and at least can spread the word to others to do so as well.  At least prayers are “free” and maybe if enough people “pray” for me… perhaps something can happen.  I know “miracles” are possible and I am hoping that if enough people “pray,” perhaps I can get my “miracle” of “getting better.”  But like I said before… I know that is only possible if other people know about it.  Therefore… that is why I am hoping for the media to also cover it, as well as I am hoping that people are spreading the word to please “pray for me.”  When I do receive a words of encouragement, I can’t begin to tell you what it does for me.  It gives me strength and rejuvenation to continue on.  You can’t begin to know how weak and knocked down I am because of this illness.  However, it is because of others believing in me, the encouragement and support of others, that enables me to continue pushing onward.  I gain my strength through the support of others.

 I also would like to receive media coverage so people not only help me achieve the necessary support that I need to receive the essential treatment needed to save my life or the much needed prayers, but I am also hoping to bring awareness to my condition.  I am suffering from a very rare and life-threatening disease that not many people know about.  That is partially why I have to seek top specialists and travel so much.  Only 8 hospitals in the entire country actually perform the transplant that I require and they aren’t in New York.  Also… I need to have a ketamine coma that is not FDA approved because the amount of ketamine that I require is too high.  Therefore, I need to travel overseas to get this coma, but I do need other variations of this coma as well in the meantime to hold me over.  All these comas aren’t paid for by the insurances and therefore, it is necessary to receive help because I can’t afford them. 

 I also want to show people that they shouldn’t take life anything for granted.  Who would think that I would have been robbed of life?  Everything that you take for granted… walking, eating, having a family, having a career, etc.…. it all has been taken from me because of this illness.  It is so unfair.  When I was younger, I had so much going for me.  I was so smart and graduated High School at the top of my class. I was an accomplished violinist who scored a perfect score on the highest level of NYSSMA (New York State School Music Association) and a competitive figure skater.  I had the ambition and hopes to become a doctor so that I would be able to help others live.  I also had the dreams to get married and have a family one-day.  However, I was robbed of all this stuff because of this illness.  Now all I have in life is to remain in bed, I can’t be touched because I am so hypersensitive, I am in constant pain that you wouldn’t be able to begin to imagine, etc.  I have become completely isolated and trapped in my own house because I have so much hypersensitivity that the slightest innocuous touch will send me the most excruciating pain.  The sun burns me, the temperature affects me, the rain affects me, etc.  The nights are sleepless.  I can’t put a sock or a shoe on my foot because of the sensitivity.  I can’t eat.  I can’t fight anything.  Everything is magnified to me on a larger scale so that a simple needle stick is like a “knife” in me.  I can’t walk.  I live my life in and out of hospitals.  In a nut shell… My life is just upside down.  I never thought that I would end up like this.

 So… I am praying that I just get hope fast because I am rapidly deteriorating. I was already told that if a miracle or treatment isn’t sought soon, I will surely die.  I was already told also that these are probably my last holidays.  If I was a “male,” I definitely wouldn’t be here because my levels are so very low… lower than a male could handle.  Luckily, females can live to a bit lower level and therefore, I am able to hang on a bit longer.  But my life is literally on a tightrope and that rope is ready to snap.  My levels are even borderline for what a female can live at.

 I know I am getting worse and I know how I desperately need to get back to California.  We had to leave California last time because we ran out of money.  Therefore, we returned home, but we were supposed to go back to get further treatment, as the doctors told us up front how dangerous is was for us to leave because I can die literally “any day.”  I wasn’t accepting any of the tubes and they were trying everything to “buy time.”  The doctors wanted me to return back and then they would put me in a “coma.”  During this time they would also give me certain tubes to try to get my body to “accept” them and to help to “buy time.”

 With everything happening and with me deteriorating so rapidly, we haven’t been able to make it back to California.  The finances are too tight and we really needed to focus our finances on going to a hospital where the insurance would pay for the transplant.   However, I really need to still go back because I am so ill.  I am basically like “death.”  I look worse than a person in a concentration camp.   I am skinnier than a toothpick, my mouth looks worse than a Jack O’Lantern because my bones (and even teeth) are just deteriorating, and my skin is literally just on a bag of bones with no fat or muscle underneath.  I hate looking in the mirror because of what I have become.

 Anyway, the doctor from California has been contacting me all day today to check up on me.  He knows how sick I was when I left and how desperately I needed to return.  He is also quite aware of how sick I have gotten.  I can’t believe that the doctor himself called me to check up on me and to try to get me back to California.  That just shows how good of doctors they are in California.  I just wish I could go back there.  But unfortunately, the insurance company won’t pay for the transplant there. 

 One treatment that I desperately need is a multi-organ transplant that includes receiving a new stomach, small and large intestine, and pancreas because my entire GI system is gone.  My stomach and intestines are basically “dead” and therefore, I need to have this transplant.  However, it is extremely rare and risky.  It runs the highest rejection rate of all transplants.  Only 6 hospitals in the country actually perform this risky operation.

  I am supposed to be leaving a week from Monday (December 16th) for Nebraska.  However, I don’t know if that is the best place for me.  The best place for me is in California at the Stanford Medical Center.  They have the best doctors and team for me there because they are not only knowledgeable and capable of doing the transplant, but they can handle and manage my entire condition. I am very complicated and I need many different specialists in order to handle my neurological disease, brain tumor, autonomic dysfunction, pain, etc.  Not only are the doctors fantastic there, but the  nurses are as well.  I have been going to that hospital many times and we are very happy there.  We never receive better treatment than we do there. The doctors are so caring and really take their time with us.  They go way beyond the call of duty there. However, my insurance will not allow me to have the transplant there in California.  They will only permit me to have the transplant in Nebraska and in Indiana even though I know that the BEST place for me probably is there in California.

 So… I really need to go where the insurance is going to pay for the transplant because it is a very expensive operation.  Even with them paying for the operation though, I still need the help of others because without the help and support of others, I will not be able to receive the transplant even though the insurance will cover the actual transplant.  I still need to pay for medications, traveling expenses, doctors, copayments, health insurance, deductibles, etc.  The cost is still astronomical, as the cost of the transplant is only a piece of the bigger picture.  So, just because the insurance would cover the actual transplant… it doesn’t really “make things happen.”  Just in co-payments alone (and that is with the insurance paying), I pay at least $25,000 alone a year.  I still have to worry about the medications, doctor bills, etc. that aren’t covered by the insurance.  Plus, I can’t receive treatment locally and therefore, the traveling expenses really add up quickly as well and are extremely expensive.  Especially when I receive the transplant, I will have to be living there for a while, so we will need money to pay for that.  My parents will not be able to work at that time because they will be with me and therefore, no money will be able to be made or able to be used to pay the bills. In addition, with them taking so much time away from the business so that they can take me to appointments and surgeries, they are also not working. This means less money being made as well and less money to pay the bills and for my treatment.  We also found out that even though the transplant is “covered” at these hospitals, the anti-rejection medications that I need afterwards will not be covered and therefore, I will have to pay at least $1000 per month just on those drugs alone.  So, I really need to find a way of raising some money despite the fact that the insurance will pay for the cost of the operation at these hospitals if it was to happen. 

 Anyway, I still have to decide where to go really because we don’t have the money to go to all those places.  We barely have the money to go to one of those places.  I am also in no condition to travel.  Traveling is extremely hard on me and it really affects me.  It really exacerbates my illness and makes it flare up.  With me deteriorating the way that I am and being so sick, the doctors don’t even want me to travel back and forth anymore.

 Even though I really would like to have the transplant in California, the insurance company will not pay for it.  Therefore, I have to choose whether to go to Nebraska, Indiana, or even Cleveland Clinic.  I just got notification that we got the approval for Indiana, and we are still awaiting to hear from the Cleveland Clinic whether the insurance will cover me there.  I am supposed to leave Monday (December 16th) for Nebraska, so I need to decide before that where to go because like I said before… I can only go to one place due to my state that I am in and the financial issue.  However, I just don’t know what is the best place to go.  They all have their pros and cons.

 The surgeries that require 12 hours are complicated.  Multi-visceral transplants involve removing several abdominal organs at the same time and replacing them with a healthy set from a single donor.  To describe the procedure to patients, IU Health transplant surgeon Dr. Rodrigo Vianna uses a car-repair analogy: “Replace one part [organ] at a time and you could still have problems. But by replacing the entire engine block [all abdominal organs], you can better ensure the problem will be fixed.”  This is a really special operation that I desperately need.  If I got this operation, I would be so blessed because it’s a gift of life!

 Nebraska is considered the largest center for my illness and for intestinal transplants.  However, they don’t do multi-organ transplants.  Therefore, I will be one of the first that they will be doing.  Even though my operation is extremely rare as it is (hospitals only do like 1-2 a year), I still am not sure if I want to be a “guinea pig,” especially when this operation is so risky as it is.  I also don’t know if it is a good idea to go because I don’t know how “good” they are in the other aspects of my illness. As I am extremely complicated and complex, I don’t know if they are capable of handling all the other issues that arise.  I need to really be in the best of hands and in the hands of people that can handle all my complicated and rare issues.  You know?

 Nebraska is really a great hospital and they seem like they will take really good care of me, but I am not sure because like I said… they aren’t really known for “multi organ.” They do have their pros though.  They will be having doctors pick us up at the hospital and instead of staying at a hotel, they are having us stay in a hotel that is connected to the hospital.  So… it really makes it easier on the commute back and forth because we literally never have to leave the hospital.  They are also really thorough in their testing, as they are making me go for every single test you can imagine.  Even though they have all my records, they still want to run their own set of tests.  They even want to do tests that aren’t just in the GI field. Another pro for them is that they will allow me to live at home until I get the call that the transplant is available.  However, I would have to get a private plane to bring me there because that is the only way that they would allow me to come, which is the only downside (I guess so that I can come so quick.  It will be extremely expensive).

 As for Indiana, I just got the news that they will approve me to go there.  Out of all the programs, only six, including IU Health, have done more than 10 multi-organ surgeries. In fact, of the 54 surgeries performed nationally last year, nearly half, 25, were done at IU Health. They have been doing Multi-organ transplants since 2003.  The rapid transplant turnaround is far faster than the 1.6-month average wait time for a multi-visceral transplant at the IU transplant facility, which is much faster than the 6.1-month national average.  In 2011, IU Health Transplant ranked number one by volume for intestine/multivisceral transplants. In addition, our one-year patient survival rate is well above the national average.  The national one-year survival rate today is 75 percent, though IU Health’s rate is roughly 85 percent.  On top of that, IU Health’s wait time for organs is just 40 days, compared to the national average of six months, according to the Organ Procurement and Transplantation Network.

However, one big downfall for Indiana is that they will want me to live within 4 hours of the hospital until I get the transplant.  There really is no known date when you will get a transplant and therefore, it will mean that we won’t know how long I will have to live there beforehand.  If I am going to have to stay there, it will also mean that my father wouldn’t be able to work and therefore, we don’t know how we are going to pay the bills and get money.  So… that is one major problem.  However, it is also a lot closer than Nebraska, so if there was an emergency, we can get there much faster.  Dad can put me in car and we can drive there.  It might take like 12 hours to get there, but we would never be able to drive to the other hospitals.  In addition, whereas if there was an emergency I would have to be heliported to Hopkins of there was an emergency because Nebraska and California are too far, I probably could be heliported to Indiana because it is much closer. 

Finally, there is one other place that we are looking at going to, which is the Cleveland Clinic.  The pro of going to this hospital is that the surgeon is to have supposedly have done multi-organ transplants the longest and have supposedly have done the most.  Even though the hospital isn’t as well known and as “big” on it as the Indiana, the surgeon is very well known for it.  He brought the five-year survival rate from 40% to 60%.  He also pioneered different methods for the transplant so that patients can better accept the organs.  He has done studies and found results that supported the minimization of immunosuppressive therapy for intestinal and multi-visceral transplant patients.  That is really a good thing for me because that was one thing that the doctors were really worried about because I have autonomic dysfunction as well as an autoimmune disease. So… they were afraid for the transplant and afterwards (with the anti rejection meds) because I have no immune system whatsoever. 

However, even though we know that we have Indiana and Nebraska right now to choose from because the insurance will pay for those hospitals, we are still awaiting for the Cleveland Clinic. As of right now, the insurance company wanted a letter of “necessity” from the doctor, which the doctor sent this morning. So… I should know within 48-72 hours hopefully if they will cover me (excluding weekend).    

So… I really need to decide on which hospital to go to. I need to find out which is the best place because like I said before… I can’t afford to go to each hospital because of financial reasons and due to my condition.  I am rapidly running out of time and therefore, time is of the essence.  Decisions have to be made and made quickly.  I am supposed to leave for Nebraska like I said on Monday, December 16th, and therefore, I need to decide by then because I can’t go to all these places.  However, even though Nebraska is the “largest” center… I don’t know if it is able to handle all my needs because I am so complicated. Over all, I think I might be better at Indiana or even Cleveland because the hospital I think over all might be better and better able to handle me.  Nebraska might have great specialists in the transplant area, but what about the other areas that I need?  I think that the other hospitals will be better off since they are much more major hospitals, but I don’t know. 

So… I have a lot to decide on and so little time.  I just don’t know what to do because they all have their pros and cons.  But… I do know how time is of the essence. 

Well… I am going to go and rest.  Hoping that tomorrow will be a better day.  Even though I know it probably won’t be, I can hope… right?  Now that it is the holiday season… I am hoping that I get that special present of “getting well.”  Happy Hanukkah to all who are celebrating!!  When I find any new info… I will let you know.

Love always,

Fallon

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December 6, 2012

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Hi!  Obviously if I am writing, I have some news to share.  I haven’t written in awhile because I haven’t been well.  It hasn’t really been good here.  Even though it is the holiday season and I am hoping for that “holiday miracle,” it appears it isn’t going to happen.  With the holidays approaching, I really only have 2 wishes.  I really wish that a “miracle” takes place and that I get better.  However, if that can’t happen, I kinda wish that I would get my “wings” because I am just suffering way too much already.  I don’t know how much more I can take of this.  I am hanging on… but barely.  In fact, the ONLY reason I am hanging on and making it is because of the encouragement and support I receive from my family and others.  It is through the encouragement and support of others that I gather my strength to continue on.

Things have really been deteriorating.  I am supposed to be leaving for Nebraska in about 1-½ weeks.  So, I just really have to hang in til then because hopefully they will have some answers for me.  Hopefully they will be able to help me because that is where I am hoping to receive the transplant, as I need a multi-organ visceral transplant, which includes a new stomach, small and large intestine, and pancreas. Only 8 hospitals in the country perform this transplant and even though I am so much better off in California, my insurance company is forcing me to have it done in Nebraska.   Nebraska is supposed to be the largest center for intestinal transplants, but they do not do “multi-organ” per se.  I will be one of the first for this.  Talk about being a “guinea pig.”

Even though my transplant is extremely rare, as each place that does it only really does 1-2 a year, I still don’t want to be one of the first cases that a hospital does.  It is one of the most dangerous transplants that you can have, as it runs the highest rejection rate of all transplants.  Therefore, I really want to be in the best of hands because there isn’t one transplant that is done that doesn’t have complications and with my health… you have to be extremely careful because I am so very fragile.  I only weigh in the 60s and I have so many other health related factors that can easily kill me.  This transplant is dangerous for anyone, but for me… it is disastrous because any surgery for me (even the most minimal) is as intensive as it can get and can result in death due to the poor health status that I am in.  I am soooo weak and fragile that if I survive through the surgery, it would be amazing.  They have to be extremely careful and then the recovery will be extremely hard on me as well.

I really need to be in the best of hands.  Even though the transplant is probably my best option and only option, I am still hoping that possibly there are other things to be done.  However, we have exhausted all other options, but I am hoping that perhaps a new center or a new set of hands from a new doctor might have something new up their sleeve or different.  You know?  After all… transplant is something you want to do as a last resort because it is not only so dangerous and risky, but nothing is as good as your own organs.

Even though Nebraska is 1 ½ weeks away, we are still awaiting to hear from Cleveland Clinic.  There is a doctor there that supposedly has done the MOST multi-organ visceral transplants.  Even though Nebraska is known for being the largest center for intestinal transplants, they don’t really do the transplant that I require, as the most that they really do is transplant the small intestine and remove part of the stomach.  Also, just because they are the “largest,” it doesn’t mean that they are the “best.”  I much rather go to a smaller hospital if it means that the surgeon is better and such!  After all, the Cleveland Clinic is so well-known too and considering all my other health issues, I think I am probably better off there because if something else should arise… at least they are equipped to handle me.  Even though I am sure that the hospital in Nebraska is good, the Cleveland Clinic is ranked in the nation as one of the best.  Plus, it is also closer to my house; so even in distance… it is much better in traveling.

The doctor in the Cleveland Clinic has supposedly been doing the transplant that I require for the longest amount of time of all the doctors.  He has supposedly been doing them for the past 30 years and has changed the 5-year survival rate from being 40% to being in the 60s.  I think that is quite an accomplishment.  No other doctor has supposedly seen as many multi-organ transplants as he has.  So… with all things considered… I really think that I am better off going to him.  However, I am still awaiting to hear whether he will accept me and if the insurance will pay for ne to go there.  It just stinks that the insurance will only pay for certain hospitals because there are just so few as it is and the ones that are good and I feel comfortable in, like the hospital in California, they don’t cover.

Even with the insurance paying for the actual transplant, I still need so much donations and support from others.  Having them help pay for it “helps,” but it no way covers all my problems.  Yes it covers the multi million-dollar operation, but it will not cover the rest of my treatment that I require or the travelling expenses or the living expenses that we will have to deal with because we will be forced to have to live there at the hospital for some time.  It will also not cover my all my medications, which includes the anti-rejection medication that I will require after the transplant that is needed to survive.  Just the anti-rejection medication will cost me about $1000 per month in addition to all the other medication that I require.  My medical treatment is just so expensive and without the help of others, I fear that we will not be able to continue it.  Especially with the upcoming New Year, I really am scared because it means that in order for me to be covered, I first have to reach the deductible needed for my insurance company.  It stinks that they will not cover me until I pay out-of-pocket all the money for the deductible and then even when I do finally do that, it isn’t like they totally cover me anyway.  I pay so much money in copayments and on medication and doctors that are not even covered by the insurance plan.  Just in copayments, we pay over $25,000.00 a year.  So, I am really scared because I don’t know how we are going to afford the deductible since money is so very tight and until we afford that, the insurance company will not pay any of my bills.  It is always something with them.  Health insurance is great until you need it. It is like the saying goes… “Health is wealth!”  People don’t realize that if you have your “health,” you really have everything!!

So… I am really hoping that a miracle happens this holiday season.  With the upcoming holidays, I was hoping that the media might be able to feature my story.  Even though I have tried this route plenty of times before and it hasn’t happened, I was hoping that I might have a chance now because of the holiday season.  I was hoping that they would have a “change of heart” or something.  I know it isn’t really “what you know, its who you know,” but I was hoping that they would be able to help me and find the kindness to help me during this holiday season.  The doctors have already said that unless a miracle happens soon, this will be my last holidays.

I am really not doing too well.  My body is shutting down faster than ever.  I just went to the doctor today and it appears that my kidneys and bladder aren’t doing too well.  I went to the kidney doctor because of the huge pains that I was getting.  Something just wasn’t feeling right. I also have been more nauseous than usual.  I can’t tolerate any smell whatsoever and it appears now that I have such a keen sense of smell.  I can’t believe the odors that I can smell.  I smell literally everything and everything makes me nauseous.  It is like being pregnant because pregnant women can smell everything and anything, but I can assure you that I am definitely not pregnant. 

I kinda had a feeling that something was really wrong with my kidneys. My kidney doctor is always so very busy and “booked” up.  However, when I called him and told him everything that was happening, he made a special arrangement for me, as he met me the very next morning first thing.  For him to do this… I had a feeling that something wasn’t “right.”

Well… when I went to the doctor, he told me that it is now time that I need to have IV treatment at least twice a week in the hospital.  My organs and body can’t keep up with the hydration that I need because they are shutting down and such.  In addition, it doesn’t help that I have all the vomiting, mucous coming out, inability to drink because of my paralyzed digestive tract, etc.  As a result of this dehydration, the body shunts blood flow away from the skin to internal organs, for example, the brain, heart, lungs, kidneys, and intestines.  As a result, my organs are further becoming inflamed and shutting down even more.  It is like a continuous cycle… one thing affecting the other.  I definitely wasn’t expecting to hear this news.  I hate hospitals as it is and it appears that I am going to have to go there at least 2 times a week so that I can have this IV treatment due to all my organs shutting down.  Never a dull moment.  With this happening, that is one of the reasons why I am having the debilitating stomach pain that I am having.  The organs are just so inflamed that the slightest thing I put in my mouth will cause great pain!

I had signs of this for a while because of my blood work hasn’t been good.  However, it has gotten to the point that it is really life threatening now.  My kidney function tests are not good at all, as my bun and creatinine tests are elevated, which are signs of dehydration.  That is further proof that I need this IV treatment at least twice a week because without it, I will surely die.  Like I said before, my organs are shutting down.  This can even lead to coma because of the decreased blood supply to the brain, as well as to shock because when the fluid loss overwhelms the body’s ability to compensate, blood flow and oxygen delivery to the body’s vital organs become inadequate and cell and organ function can begin to fail. If enough organs begin to malfunction, the body itself may fail and death can occur.

So now I need to go to the hospital for this IV treatment.  I don’t know how on earth we are going to be able to do this because this means more time away from the business because my dad has to take me.  My dad has already given up so much time to take me to my appointments.  He is working like a horse as it is and I am already so very scared that something is going to happen to him.  If something did, I would never forgive myself.  As it is, he works every single day…. 7 days a week … from 4 AM til 7 at night.  He is no youngster and there is no way that he can keep up this pace.  I am so scared.  But, he is trying to keep whatever work he has, as well as make up whatever work that he misses.  After all, when he doesn’t work, no income comes into the business and not only does it hurt the business, but it hurts us as a “family” as well because there is no money to pay our bills.  My dad already is taking a lot of time off to take me to whatever appointments I have already, especially to take me to Nebraska; he really can’t afford to do more.  I don’t know how on earth we are going to do this because we can’t afford to do everything.  We can’t afford not to take me for treatment because I will die and yet, we can’t afford not to work either because we need money to pay the bills and for my treatment.  It is a “no win” situation. 

In addition, when the kidney doctor examined me, he also took an x-ray of my abdomen.  It was seen that my stomach has gotten so much worse.  Even though my stomach is “dead,” it is getting distended with gas.  The doctors are afraid that it is going to end up twisting or something on me, which is not good.  Besides that though, it is contributing to even more pain and discomfort.  I really need to get help and help quickly.

I can’t take the pain anymore.  I have been maxing out on all my pain medications.  I only wish that they could find me something else to take.  I never thought that I would be screaming for more pain medications because I was never one for medication.  However, I am literally climbing the walls.  I am on so many different pain medications like Methadone, Morphine, Dilaudid, Nucynta, etc. but nothing is cutting it.  The only thing that helps is the ketamine comas, but they only help when I am “under” because the amount of ketamine that I require is far too great than is FDA approved.  That is why I kinda wish that I just get put into an everlasting ketamine coma so that I can just escape the pain.  It is just unbearable.  I don’t wish this pain on my worst enemy.

The pain is unbearable.  I spend the nights awake crying because that is all that I can do.  It is just torture.  The pain goes right from the surface of the skin so that the slightest touch can send me up the walls to deep aching pain within the bones.  Nothing is worse than bone pain, as it is the worst imaginable pain that you can imagine.  Nothing cuts through that kinda pain except the ketamine and I think that the only reason it does that is because I am “unconscious” and therefore, I don’t know any better.

Besides the pain, I am getting so weak.  I barely can get off the couch.  Whereas before I was still able to “push” myself to a certain extent to do limited stuff, I can barely get off the couch nowadays.  Even getting off the couch to go to the bathroom is really too much to bear.  I literally hold it in so that I can try to minimize the amount of times I have to get up.  Every time I get up, I just feel like I am going to collapse. All I wanna do is just lay in bed or on the couch because that is all that I can do.  I am not even comfortable either because I can’t even lay with a blanket, as the slightest innocuous touch sends me up the walls.

My animals are my only sense of normalcy and comfort.  Thank goodness that I have them.  If I didn’t have my cat and dog, I don’t know what I would do.  My cat stays with me all throughout the night and my dog stays throughout the day with me.  She is like my babysitter.  My mom and dad used to always know when I was doing “worse” than usual because she would be by my side and wouldn’t leave it.  When I have to go to the bathroom or something, she will literally follow me there and then follow me back to the bed.  Even during the day, when I have to get off the couch and she hears me stirring, she will come running so that she will come with me to wherever I have to go.  I have nicknamed her “twinkle toes” because she hears me all the time and then I hear her little toes coming.  It is so funny.  My dog, on the other hand, just stays with me on the couch all throughout the day.  So, even though I don’t have any friends or family to stay with during the day because my family has to work, I am in good hands.  I have my “companions” to stay and keep an eye on me.

However, I was looking into getting a service dog because it was suggested that I should get one considering everything all that is doing with me.  I thought it would be a good idea as well.  Due to all that has been happening, I think it is an excellent idea, but I know that it takes forever to get one.  I am putting it on my Christmas list, but I know it won’t happen.  I would really love one more than anything because not only would it make my life easier, but it would really give me the companionship that I am missing.  You really learn who your true friends and family are when you become sick because so many people walk out on you. 

Anyway, having a service dog would be the best idea for various reasons.  Not only would the dog really make a great companion, but it would make “living” so much easier.  I can’t do many things because I can’t walk.  The dog would really make my life so much easier, as it would be able to get me things, open doors for me, etc.  It would really be a great asset to me, especially since of the debilitating state that I am in.  In addition, since I am so gravely ill, we never know what is going to happen to me.  It is very possible for me to have a seizure, my heart to stop, etc.  I have severe autonomic dysfunction and I am so gravely ill that there are so many times we don’t even know if I am going to make it through the night.  There are so many times that my dad is so afraid to leave me because he doesn’t know what is going to happen to me.  At least with the service dog, hopefully the dog would be able to alert someone if something was happening to me or something so that if an emergency would arise, I would be able to be cared for immediately. 

So… as you can see… it would really be an excellent idea to have this type of dog.  However, like I said before… it usually is a very long waiting list and I don’t really have the time to wait.  I really need it NOW and I know realistically that isn’t going to happen. But, maybe Santa will still answer my wish and at least send me that wish for Christmas because I need the help so badly.  It would not only make my life easier, but it would help my entire family out because they wouldn’t have to be on so high alert in case something happened to me.  The dog really would be an asset. 

With me deteriorating so fast, we never know where I am going to be.  I am literally walking a “tightrope” and it is ready to snap.  My dad walks around the house saying how I “belong in a hospital.”  He is right, but I really don’t wanna go.  I don’t wanna live out whatever time I have in a hospital.  Plus, the hospitals around here really can’t help me.  I really need to go to California, Nebraska, Cleveland, etc. because those are the hospitals equipped to handle my disease.  But like I said before, those hospitals take money… money that we certainly don’t have.  It must be so hard on him as a parent to watch me as his daughter go through this.  He wants to help me so badly and yet… his hands are tied.  My dad would do whatever it would take to get me well, but he knows that no matter what he does… nothing is going to get me well. 

My dad is so afraid of losing me and to be quite frank with you… if I should die, my dad would never recover.  He is constantly bribing me about staying here.  He is constantly saying how he would “never take care of himself” or “take his medications” if something happened to me.  He acts like I am in “control” of this situation, but he is just doing whatever he can to try to keep me here.  He has a theory that either I am being “tested” for something higher or I am being “challenged” for something better.  He has an answer for everything and he won’t let me give up.  I not only want to get better and live for myself, but I want to get better and live for my dad.  Not only do I want to become a doctor so that I can make others better, but my dad wants to be able to see me become that doctor that I desire to be.  I only hope that my dad gets that opportunity to see it because I know that would make him the happiest in the world.

With the holidays approaching this month and my health deteriorating so fast, we have been celebrating the holidays earlier than they are.  This way if anything should happen, we already have given each other our gifts.  I saved up and bought my mom this beautiful heart in another heart necklace. This way she can always remember me and how much I love her.  She can always have my love around her neck.  As for my dad, I bought him a new pair of shoes for work and new work shirts.  He needed these items desperately and he wouldn’t buy them himself.  So… I figured that he could also use the shirts when we went away as well, so it was a good idea.  As for my brother, I bought him a electronic tie rack for his closet.  He has started working and since he is wearing ties everyday, I thought it was a good idea.  I really wanted to make these holidays really special for them because like the doctors said… these are probably my last ones unless that “miracle” happens.  After all, they have done so much and given up so much for me.  I wanted to make them extra special for them.

I have been trying anything and everything to try to bring some “luck” to me and to try to bring that “miracle” into my life.  I not only put rocks up that are supposed to “heal” me, but I have put on my necklace the “Evil Eye.”  This “eye” is supposed to stare back at the world to ward off the evil spirits and keep me safe from harm.  I am willing to do anything and everything to try to help me. 

Well, I am going to get going.  I am not doing too well and I have bloods in the morning. Sometimes I wonder why I bother going because I only ever hear bad news.  But…. I have no choice.  I just hope that I don’t end up in the hospital because everything is “touch and go” right now. Not only am I medically unstable because of my organs and such, but my bloods are not good at all.  As of my last bloods, my heart bloods are very low and I can easily have an arrhythmia and cardiac arrest.  I am also having a difficult time clotting.  Never a dull moment with me.  I just hope that my bloods don’t worsen because there is only so much that my body can take.  I am barely hanging on as it is; I am hanging on by a thread. 

I have also set up another site in the meantime for the holiday season in hopes that I might receive additional donations.  It is located at http://www.wishuponahero.com/wishes/?id=1358295.  Even though I haven’t received any donations as of yet, I have received some comments and some well wishes, which I haven’t expected to receive.  So, it was really nice to receive them to my surprise!

Well… I will hopefully write again before I leave for Nebraska or Cleveland (if I end up going there).  When I know anything new, I will of course try to write and update you again.  It is just getting harder and harder with how I am feeling.  But, I do want to keep you abreast as much as I can.  I really hope that you have a happy holidays.  Enjoy the rest of the year… there is only a few more days left!!

Thanks again for all your support and encouragement.  I definitely wouldn’t have able to have made it this far without you.  In fact, like I have said before… I am basically holding on and continuing because of you and your support.  You can’t imagine how you rejuvenate me.  I am so thankful and appreciative for everything that you have done for me.  You really re-energize my batteries so that I can continue to be the “energizer Bunny” and so I can “keep going and going.” Take care!!  If you can offer any help whatsoever, it would be much appreciated…. whether it is by donating (even a $1 makes a huge difference), sending a prayer, or spreading the word that HELP is needed.

Love always,

Fallon

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