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.