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