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LiversAreCool100 karma

I definitely did. The first one I was only seven, the real effects of literally waiting for someone to die so I could live wasn't really in my mind. But as I got older I realized that not only am I waiting for someone to die, but I'm also taking a second organ for myself when many don't even get one. I talked about it a lot with my mother and the doctors and they made a point to say that they don't really just pick livers to give to people willy-nilly, they strive to find a liver that matches your body type and shape and you only have less than 24 hours before an organ is damaged when out of a body. If there isn't anyone near to get that organ, it will go to waste. When they told me that I had a possible match, I was one of 3 people waiting at the top of the list at that hospital and they chose me because the liver matched my blood type, size and shape, when it didn't in the next two biggest cities, Philadelphia and Washington D.C. (where the liver originated).

I still struggle with the fact that I am alive because two people died and the doctors were very clear with my mother and I that I had about a 50% chance of survival during the procedure and the head of the department came out 4 hours in to say that I was not doing well on the table. It's crazy to think how many times I should have died, but haven't. Realistically, I should have died about 5 times before the second transplant, I was septic 4 times and the catalyst to me spending 8 months in Pittsburgh waiting for the transplant was I woke up covered in blood due to internal bleeding. How I didn't die during those sepsis episodes, or how I managed to not bleed out (while I was asleep mind you), I don't know.

I hope you talk to someone about your feelings, it helps to have a soundboard on these types of rather complex issues. Feel free to PM me, if you'd like.

LiversAreCool80 karma

I understand the confusion, I really only know in layman's terms about this process. Essentially there's nothing wrong with the MSUD liver except that her genes don't code for the production of a specific protein. Since my genes do code for that protein, and since I had completed the majority of my cognitive development because I was 16 and MSUD is non-communicable, I received a healthy liver.

Since the liver codes/produces the most of that vital protein, a liver transplant, if done early during development, can increase cognitive development to normal or nearly-normal in an MSUD patient. So there is one person who dies and two who get a transplant, which is increasingly important since organs are in short supply.

LiversAreCool42 karma

Oh no, that would be HIGHLY illegal. This was honestly the best situation that could have ever happened. Her liver was the right size and shape and in very good condition and the liver was only out of her body for ~20 minutes before I was wheeled into the OR.

LiversAreCool30 karma

I believe that, if you survive the first 6 months, the expectancy is 22 years. But that's an average, some people live on a pretty normal life but some die. Most of the people I knew that received transplants and passed died due to recurrence of their disease. I believe the first liver transplantee (which was in 1989) is still alive.

LiversAreCool26 karma

It's like Hot Potato, TBH