September 15, 2013 Hi- I just wanted to share a bit what has been happening especially since I am leaving in the morning for Washington D.C. I am not doing so well and rapidly deteriorating. I know this blog might be mumble jumble, but please bear with me because even though I am deteriorating and suffering, I want to make sure that you are aware of what is happening. The most major news is that I am leaving tomorrow for Washington D.C. It isnt going to be a long trip, but my father and I have to go because we have to meet with the transplant team at Georgetown hospital. Like I have told you before, I am really sick and I my entire GI system is literally dead. Therefore, I need a multivisceral organ transplant, which is extremely rare and risky, and only like 6 hospitals in the country actually perform. I need a new stomach, small and large intestine, pancreas, and liver. The survival rate is not so great, as it is the most dangerous and riskiest transplant you can ever have. But when you are down to weighing in the 60s and basically going to die without it, what other choice do you have than to go and go through with it? After all, I cant eat, absorb, etc. Originally we wanted to have the transplant team in California at Stanford Hospital perform the transplant. However, there were a lot of problems arising and as a result, we thought maybe by going to Georgetown, it would solve a lot of the problems. This transplant is extremely expensive, as it will cost over hundreds of thousands of dollars. Even with the insurance covering whatever they will cover, the cost that we will have to contribute will be so astronomical. Besides the actual cost of the actual transplant operation, we have to worry about relocating to a closer area to Georgetown because I will need to be in the hospital for at least 3 months. This will also mean that my dad will not be able to work as well, which will cause additional problems. The traveling expenses for the transplant will be astronomical because there are so many times I am going to have to travel back and forth to the hospital and like I said before, I have to worry about the relocation cost as well. In addition, I also have not only the cost of the actual operation, but I will have to take anti-rejection meds the rest of my life, which will be extremely expensive. That cost alone will be at least $5000 in itself. So, it is really important that I get as much help and donations as possible because I dont know how we are going to be able to afford all this otherwise. My life is literally hanging on the clothesline out to dry. In the meantime, I have to meet with the transplant team. Even though I am listed as in need of a transplant, there is so much testing and meetings that you have to do in order to be officially listed and prior to getting the transplant. At any time during this process, the team can deny you and say that they will not be doing it even if they know deep down that you are really sick and going to die without it. So we are really hoping that all goes well when go to Georgetown because like I said before they can back out and not do the transplant anytime even though they know that you desperately need it. After all, the transplant is so dangerous and risky and the survival rate is not that good. They say that the key is to be sick enough to warrant the transplant but well enough to be able to come through the operation and recover! So it is kinda like a catch-22. So all we can do is cross our fingers and hope. We just know that it has to be done as soon as possible because the longer that we wait, the weaker and worse I am getting.
Posted on: Sun, 15 Sep 2013 05:39:29 +0000