I have recently spoken to the UCSF doctor, the Indiana U doctor, and the Mayo Clinic doctor. Come to find out I have been operating with some fuzzy science. As Lon often reminds me, I am one per cent of a rare disease nobody has heard about--amyloidosis. The test that Mayo did on my biopsy was very new, in fact the paper describing it has just been published. If my amyloid had been discovered just a couple years ago I would have probably been treated for primary amyloidosis--something that would have been useless and potentially dangerous.
I am in a tough spot as far as to what I need to do. There has never been a precedent of only getting a liver transplant. In fact one doctor who is actually treating someone with my disease said that all of his patients have come in on dialysis. He is encouraging me to go with liver only. The other doctors are throwing the ball back in my court and letting me decide. So my choices are basically to get on the liver transplant list and get a liver quite soon, possibly 2 or 3 months (short wait because they will be able to use my liver for someone else) or to get on the kidney/liver list and wait around a year to get both organs (longer wait because I will actually be taking an organ). One of my big fears is waking up from the anesthesia and being in kidney failure. Another drawback to liver only is the risk of kidney failure and needing major surgery again. But if my own kidneys shape up I will need less immunosuppresents.
Alan came over yesterday for a while and we looked up live donor kidney transplants. It is actually a pretty slick procedure. The donor kidney is removed laprascopically and the donor only stays 2 or 3 days in the hospital and can be back to work in 2 or 3 weeks. So if Lon and I were to match, it wouldn't be terribly hard on him. And if we don't match, he could donate his kidney to someone on the list and I could take that person's place on the list.
I would be one of the first to ever get a liver only transplant--that's super scary. Lon thinks I would be a pioneer, but I get mad when he says that. Pioneers are brave, but I'm scared. There are so many unknowns.
Tomorrow I have an appointment with my kidney doctor. What I think I want to avoid most of all is dialysis, so I can ask him how close I am to kidney failure.
I am grateful for prayer and feel like that's where my answer will come from.
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Remember that Dad is just one potential donor. Others are willing too!
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