What is going on? Just felt like I would update since I haven’t written in awhile and I am leaving in a few days for California.
O my goodness. I have to make a decision where to have the transplant. I really don’t know what to do. It turns out that I really need a transplant and I am really deteriorating rapidly. I really would love to have the transplant performed in California because that is where I have been going, and I feel so comfortable there. I love the hospital, the doctors, the nurses, etc. It is the best place that I have ever gone to. The doctors are not only knowledgeable, but they have terrific bedside manners. They even have a whole “team” approach and they all talk to each other. Never before have I seen something like that. Believe me… I have seen my slew of doctors and no other hospital or doctors are as good as the ones that are in California.
In addition, I also need a multi-organ visceral transplant, which is very rare, radical, and dangerous. Only about 8 hospitals in the country perform small bowel transplants and the amount that do “multi organ” is even less. I need a small intestine, large intestine, stomach, and pancreas. The other hospitals just do transplant of the small intestine even though they will remove most of the stomach. However, this wouldn’t even be good for me because my entire stomach is completely “paralyzed” and “gone.” So… whereas other people might be able to get by on just a small intestine transplant because that is where most of your nutrients are absorbed as well as removing most of the stomach and only leaving a small portion there, I can’t.
My entire stomach is completely paralyzed, as my entire GI system is dead. I have problems starting from my esophagus downward. My stomach is so bad that it even looks like I have had Botox in my stomach because it is completely wide open. The sphincters are completely dilated, so food could pass through easily if my stomach did indeed work. However, since my stomach is completely “gone,” I have no contractions whatsoever and therefore, I cannot push the food through. Therefore, even if they leave a little bit of the stomach in me and just give me a small intestine, it really wouldn’t benefit me because I will still have that little bit of stomach still in me that doesn’t work. I need a completely NEW stomach. Otherwise there is no point in getting the transplant because nothing will pass through and into the intestines.
Finally, I have underlying conditions as well. I have the neurological disease and the autonomic dysfunction as well, which is spreading like a wildflower. There is no known cure for these illnesses either, but when there are traumatic experiences are stressful events, the diseases become exacerbated and spread. When I go for the transplant, you can bet your dollar that the disease is really going to be exacerbated and most likely spread because the stress of this type of surgery is probably enormous.
So, I really need to be in a place that will be able to handle me. The only place that really can handle this situation is California. I have been all over the country for these illnesses and despite all the treatments that I have had such as sympathetic blocks, sympathectomy, medications, stimulators, etc., I have failed everything. I have even been placed in radical ketamine comas, but the amount of ketamine that I require is far too great than is FDA approved. The amount that I need can only be given outside the country and therefore, I am still awaiting for the approval of the IRB board to send me to Santo Domingo, which is where my doctor is setting up another center to do his experimental “studies.” However, in the meantime, other means of treatments have to be sought and even though I have been undergoing comas in New York, they are not as intensive as the ones that I need.
Yet, there is a team in California that is situated to deal with these underlying conditions. They have treatments that they pioneered that could help me in my disease should there be a flare up, which there most likely will be. They have the snail venom as well as the ketamine coma. The ketamine coma that they will even give me there is more intensive than the one that I am receiving here, but of course it is definitely not as intensive as the one I need out of the country.
However, like always… there are always problems. I don’t think that I can ever do anything without there being MASSIVE problems. It turns out that my insurance company will not pay for the transplant in California, but only will pay for it in 2 other hospitals. They will only pay for it in California if the other 2 hospitals “deny” me. The other 2 hospitals are in Nebraska and Indiana. However, what hospital is going to reject me knowing that if they “cure” me or something, they can really have it “made?” I mean… I don’t really mean to put myself on a pedestal, but whoever “helps” me can really get a whole slew of publicity and wealth from me because I am suffering from a very rare and extreme disease and going for a very radical and risky procedure. You know? So, what doctor is going to give me up so easily?
I really need to have the transplant in Cali because my whole team is there as well as because they do the multi-organ visceral transplant that I need. The hospital in Nebraska only does the small bowel transplant, which really won’t help me. Indiana does do the whole multi-visceral transplant, but they only started doing them this past January. However, I now come to a problem because I don’t know if I should just go to a hospital like Indiana that just started doing this kind of operation in January or go to Nebraska and be the first one, or should I really fight and hope that I get ability to go to California and have the operation there. I know that this operation is very rare and that hospitals only do about 1-3 a year in general, but I don’t really know if I want to go to a hospital that only started doing them this year or be the first one in that matter. In the meantime, we are appealing the decision to be able to go to California.
However, I might be forced to only go to Nebraska or Indiana if I don’t win the appeal. Nebraska called me today and said that even though they don’t do “multi-organ visceral transplants,” the doctors had a meeting and are willing to do it on me. Therefore, I would be essentially the FIRST one to have it performed on. Do I really want that to happen? I don’t know how much I want to be the first one to have a rare, radical and risky surgery like that because there are so many complications that can arise and they won’t necessarily know what to do in order to overcome it. California even said to me when I saw them that “Not one transplant is performed without a complication.” In fact 20% end up having a major complication and really need to go back to the OR.
I am sure that Nebraska is a very good hospital, but do I really want to be the “first” one to have this performed. It is the hospital though that is considered to be the “largest” small bowel transplant center. it is also the first hospital to have performed it in the United States. So, in comparison to all the other hospitals, they have done the MOST small bowel transplants and have done it the longest. But, like I said before… that is for only small bowel. Also, the success rate of people living after 5 years is only 60%. It isn’t even that great. So, if it is that low with just small intestine, I wonder how much the survival rate will be for me with a surgery that has never been done before. You know?
I need more organs than that, so it is a much different, a much more radical, risky, and dangerous operation. So… is it really the same? I really don’t know what to do. I also know that it matters where you list for the transplant (such as what hospital) because it determines your placement and how quickly you will get an organ. Each hospital places you differently on the list and has a different speed that they receive organs. So, I don’t even know which hospital I would probably be better off listing at. All I know is that I am rapidly deteriorating and not going to make it much longer. Even the doctors in both hospitals have said that I need to have this transplant done soon because I am not going to make it much longer.
I know I am getting worse because not only are the doctors telling me this, but I am feeling worse too. I can barely get off the couch nowadays. My body just wants to “give out” already. It is like they my body is screaming out in mercy. My legs can’t even support me anymore. My legs have that “shaky” feeling that you get when you exercise too much. The doctors say that even though I have made it this long, the damage that was occurring all these years inside of my body are finally being seen and can no longer be concealed. I have also been bleeding, but it has been getting worse lately. We don’t know where it is coming from, but hopefully we will find out when I go to Cali this week because they are doing a surgery to implant a camera.
We also know that I am worse than usual because my cat won’t leave my side. She is even worse than usual because she walks by my side no matter where I go and cries that she wants me to be with her and hold her. Whenever I am doing worse than usual, she is like my “babysitter.” My parents know all the time when I am doing worse because Missy always tells them. I love that cat. I am definitely going to miss her when I go to California on Sunday and especially when I have to spend all that time away when I have the transplant.
However, if I do have Nebraska perform the operation, I do have to be evaluated by them as well. I asked if I can have the records sent from the other hospital, but of course they want to do their own evaluation. So, of course that will entail more money, more time away, and more time waiting… time I don’t necessarily have. I wouldn’t be able to get to Nebraska til another 3 weeks or so, and then the evaluation will take another week in duration to do. I don’t know if I can last that long. Plus, I don’t have the money to continue traveling and such. This disease is such a financial burden and we are literally “broke!” We are literally having such a hard time finding the funds that we need to go to San Francisco on Sunday for the upcoming surgeries.
However, if push comes to shove and the insurance won’t cover me in California, I might have to just go to Nebraska. However, even with the insurance covering it, I still have plenty of money that I need to fundraise because the insurance is not going to pay for everything. They will pay for the multi million-dollar operation, but I will still have a deductible. I will have to still pay for the living expenses because I will have to remain out there for 3-4 months afterwards, traveling expenses, appointments, medications, etc.
We desperately need help because the anti-rejection meds that are required to take after the transplant that are needed in order to survive are not even covered by the insurance and will easily cost me $1000 per month alone. That is not even including all the other medications that I will need that are not covered by the insurance or the copayments that we still pay. After all, our copayments alone for the year (and that is with insurance paying) usually total up to over $25,000. Also, I won’t be able to fly to the transplant center commercially when it is time for the transplant. They won’t accept that at all. I will need to fly PRIVATELY and therefore, it will be additional money. The cost of a private plane is like $20,000. I don’t know how we are ever going to afford this.
So…. even if the insurance should cover the actual operation, there are just so many other costs that I will still have to pay. So… even if the insurance does cover the actual operation, I will still need over at least $100,000 in order to have the operation. I don’t know how on earth we are going to pay for this, especially when there aren’t a lot of donations coming in. Don’t get me wrong… I am extremely grateful for all the donations that I did receive, but they are not nearly enough to what I need. I really need so much more because the amount that I have already made is like “peanuts!”
I have tried so much to find different ways of fundraising, but nothing works. If anything, it will work initially and then quickly die out. I have tried websites, writing to the media, flyers, etc. Yet, they really haven’t produced much. I really wish I could get on the news or in the media because the media is so powerful. I don’t understand how other people get on the news and TV talk shows and such and then I can’t. I guess it is like it always goes… “It is not what you know, it is who you know.”
In the meantime though, Nebraska did send me a whole entire packet of different ways to fundraise. Of course I have done many of those ways already. However, I really saw one way that I haven’t tried yet and I thought it would be very interesting to do. Of course it would never work out because this is New York and not Nebraska, but I couldn’t get over it when I saw the fundraising idea. They suggested having a PIG ROAST. Can you imagine having one of those in New York? I thought it was hysterical.
I was also told that until I have the transplant and such. I have to have my teeth examined like every 4-6 weeks and have the reports sent to the hospital. They said that they want to make sure that I have to infections and such since the mouth is the prime area where infections lurk.
So… I really need to start thinking about what to do. I am just hoping honestly that things work out with California. I am hoping that we win the appeal. In the meantime though, I am supposed to be leaving on Sunday for San Francisco again. I am so nervous. To think… I just got back literally 2 weeks ago and here we go again… back to across the country. I am supposed to be having lots of surgeries next week, as well as having snail venom put into me. I really don’t want Sunday to come, but you know that whenever you don’t want something to come, it always come in a blink of an eye.
I am supposed to be leaving Sunday for California and then Monday is the surgery for the tubes. I am so nervous for it. They will of course be putting me on full bypass during the operations because my body is too “weak” and such. They don’t think my body will be able to make it through the surgery otherwise. They are hoping to be able to find a tiny piece of viable intestine to put the tube in. The tube will bypass my esophagus, stomach, and most of my small intestine. The chance of this working is less than 15%, but they are trying this to “buy” me time because I am rapidly deteriorating. I am just so scared that I won’t be able to come off the bypass machines because I am too weak and sick. The doctors did express that as a huge risk.
I will then have another surgery on Wednesday to make the tubes even more permanent if I am able to tolerate the tubes and if the tubes work. The tubes can easily exacerbate and stir up my autonomic dysfunction and neurological disease and if it does that, then they have to be removed. In addition, the food has to be tolerated through there as well because my intestines are “dead” and there is no contractions. Just because they put the tube in me, it doesn’t mean that the food will be able to move and pass. They are hoping that by putting it low enough into the intestine and perhaps bypassing almost all the intestine, they might find a piece that is viable, but it is very unlikely. It can be very possible that it can still form a “bag” there as it does in the upper part because there is no place for it to go. If this happens, the tubes will also have to be removed.
I am not sure I am so thrilled about the tubes even though they will “buy” me time. We don’t even know how much time it will “buy” me. So, who even knows if it is at all even worth it. In addition, if I get the tubes, I will never eat again. I hate to even fathom that idea. Eating is such an activity that people take for granted. I don’t know what I will do if I can’t eat. I will always be hungry. Even though I will be fed minutely through the tube, I will still be hungry because it won’t ever be in my stomach or in my mouth. People feel full because it goes in the stomach and it goes in the mouth because it registers in your brain. therefore, my stomach will always be rumbling and have hunger pains. I don’t know if I want to be bothered with that
But, I guess we will have to take one thing at a time. I am also supposed to have snail venom for my underlying neurological disease and my autonomic dysfunction. They have pioneered the treatment, and therefore, it is the only place where I can get it. Hopefully it will help. Ideally, it should be placed in a pump. However, I am way too small for a pump, as there is no place to put it. They thought of putting the pump in my butt, but even there… there isn’t room. So, they are going to just inject the stuff into my spine and hope it works just as well. Then, when I gain weight, they will implant the pump. I am hoping that the snail venom works because that is one thing that I haven’t tried and the autonomic dysfunction and neurological disease is spreading like a wildflower.
As I said before, I am also supposed to have another surgery to have the camera implanted in my small intestine. I am bleeding and we have to find out what is going on. I have tried in the past to swallow the camera, but since my stomach is not working, nothing passes through. Last time I swallowed the camera, I ended up throwing it back up. In fact, since nothing passes through, I can literally take my pills in the morning and then 12 hours later when I throw up, I can literally take my pills to my father in a cup because they come back up and are not dissolved. Can you imagine? It is over 12 hours and they are still whole and everything.
The doctors have tried to do a colonoscopy on me, but even that was no good. Since I am so badly paralyzed in my GI system and couldn’t swallow the laxatives and such, I had a NG tube put in me. They only could put in less than a quarter of a liter and they had to remove the tube because it was literally backing up because of my poor GI tract. We couldn’t pour anymore of the stuff in because I was “full to capacity.” So… there went that prep. Even with the amount of prep that I took, it still should have done something. However, it didn’t do anything. So, they really couldn’t’ do a colonoscopy and see what was going on because I wasn’t “cleaned out.” So… we still have no idea where the bleeding is coming from.
I am really nervous about going to California not just because of me, but because of my dad. I know that if something happens to me, my dad will never recover. I wish he would talk to someone when I am there, but he won’t. My dad is not handling this anymore very well. He used to be “Mr. Cool” with everything and now… you can’t even talk to him. He is yelling over everything. There is like no talking to him about anything. Social workers have said that he is in the “grieving process” already. He is no longer able to keep it together. It must be really hard on him to watch me like this because he wants me to get better so badly and no matter what he does, his hands are tied.
My dad would do whatever it takes to get me well. He doesn’t want me to give up. Even though I am suffering, he doesn’t want me to die. He says that he is “selfish,” but he just doesn’t want anything happening to me. I tell him all the time that I can’t do this anymore. I tell him that I am tired. I tell him that I am tired of suffering in pain. I tell him I am tired of suffering mentally, physically, emotionally, etc. I just don’t have the strength anymore to continue to do this anymore. Like the doctors have said, even though I have been like this for so long and not shown how “sick” I really was, it doesn’t mean that it wasn’t doing real physical damage to me on the inside. My heart has a lot of damage and so does my organs. I can’t hide it anymore and either can my organs. I just can’t do it anymore. Yet, my dad doesn’t want anything to happen to me.
My dad always tells me that he is going to “freeze” me. That is how serious he is about not wanting anything to happen to me. I see how much I mean to him and that is why I continue to push on. I am so afraid of everything, but I am most afraid of leaving him because I know he wont’ be able to handle it.
So… California is right around the corner. I just hope that my dad finds the way to the hospital and back to the hotel. Even though we have been there a countless amount of times, he still doesn’t know the way to go. I am sure that he does know the right way, but he doesn’t trust himself. I am usually his co-pilot because we use my GPS on my iPhone. However, the phone is going to be of course with me, so he is going to be out-of-luck with that. So… he is planning on bringing his own GPS unit.
My mom isn’t going to California with us. So, I am planning on doing a lot of FACETIME with her. Thank goodness for technology. I really am going to miss her. I really wish she would be there this time, especially since I am having all these dangerous surgeries. But, I know that I am in good hands with dad. I just have to show her how to “Face Time!” She just got the new iPhone, so she has no excuse that she can’t.
It is getting so close to California, but there is still so much to do. I still have to go have my bloods taken, pre-surgical clearance, and today I have the cardiologist. I have to go for an echo. I wonder what news I am going to have this time.
Well, it is that time that the Fall shows are coming back. I just saw the most amazing show. I just saw REVOLUTION, and I love it. I definitely recommend it. It is about the world stopping electricity. The world is suddenly thrust back into the dark ages. Planes fall from the sky, hospitals shut down, and communication is impossible. And without any modern technology, who can tell us why? Now, 15 years later, life is back to what it once was long before the industrial revolution: families living in quiet cul-de-sacs, and when the sun goes down lanterns and candles are lit. Life is slower and sweeter. Or is it? On the fringes of small farming communities, danger lurks. And a young woman’s life is dramatically changed when a local militia arrives and kills her father, who mysteriously – and unbeknownst to her – had something to do with the blackout. This brutal encounter sets her and two unlikely companions off on a daring coming-of-age journey to find answers about the past in the hopes of reclaiming the future.
Well… I guess that is about it. I am also trying to read a book called TIME KEEPER by Mitch Albom. I am waiting for next week to get the new book that J.K. Rowling wrote. I was such a HARRY POTTER fan, so I am really hoping that this book will be great as well.
There are some movies that I want to see, but I am saving them for California. At least it will give me something to watch on the plane. I really want to see SNOW WHITE AND THE HUNTSMAN, ARBITRAGE, and SAFE. After all, the plane ride is like 8 hours and there is nothing else to do. Dad is already dreading the ride. I usually get knocked out because the doctors “overmedicate” me, but dad has no other choice but to “stare” at the seat in front of him. Whenever we get to California, dad always complains about how long the trip is. However, for me… it goes by so quickly because I am knocked out. My dad never hears a peep from me. My dad loves the iPad because at least that keeps him busy. So… I will download the movies onto the iPad so that we will have something to watch just in case I am up. If nothing else, I will have something to watch when I am in the hospital.
Well… gotta keep pushing onward. Hoping that tomorrow will be a better day. I really gotta hang in there because California is just around the corner and I have to be strong for the surgeries. With everything happening, please say a prayer for me.