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.