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.