Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hi honey, I tried to send you a private message but becsuse I am not a friend of yours it won't let me. Anyway, I was on FB PKD support group tonight and I read about a woman that lives in the UK and she is having a liver transplant, in England! Her name is Sallyanne Meredith and the transplant is being done at John Radcliffe hospital in the UK. She is fairly young like you and they have given her lots of hope that she can live a normal life again! I think you should look into this as the US is far behind your country. Go to the FB support group and search. For her name. Coach is an administrator of all 3 groups,perhaps he can help you find her. This is BIG news and you are crazy if you don't follow through with it!! Just think, you wouldn't have to lug those huge kidneys and liver around with you! I don't know if you would be eligible, but I sure would look into it if I were you! LoVe you honey! Norma ...
Thanks for your message (friends now by the way - can't believe we weren't before). I can't find the person you mention, but then I'm not on Facebook so perhaps that makes it impossible. The John Radcliffe Hospital is a centre for kidney transplants but not liver transplants. There are only a handful of regional liver centres, the nearest for someone near John Radcliffe being in Birmingham. Perhaps she is having a kidney transplant, or a liver transplant elsewhere. I know that this is a route I could go down, I'm just scared by the statistics of 80-85% survival rate for the first year. In addition, if the new liver fails there's no back up like dialysis with a failed kidney. It's very risky surgery when the liver is a s big as mine, so not a decision to be taken lightly when your children are still at school. I'd rather be struggling with what I have than not here at all. It's also a very long recovery period - up to a year. At some point I will be forced to make the decsion, but I'm not ready yet. The crunch may well come when my kidneys fail, which may be sooner than I'd like.
Chewitt