Our trip to Mayo and Vanderbelt soon

December 3, 2008 at 4:20 pm

We are leaving on the 12th to Vanderbilt for a consultation of liver transplants they from there going to Mayo. I am not feeling that we will be there long. I mean what can they say: Bill either gets the liver transplant provided he quits smoking and hopefully none of his organs are already affected. If he has too much affected then they will not even put him on a list. Hopefully our waste of time with that neuro did not cause us much harm.
2nd choice is do nothing and just enjoy the time left. That is what his uncle did.
I will not say either one will be easy nor the decision but I just wish Bill would discuss with me. He is finally become proactive now that he knows what the disease is and we cannot waste time. I am happy he is getting his info together.
I feel at least now someone is there with me. Never before has he asked questions like he did with our new researcher. He did give us the trial pill. I am sure Mayo would have preferred we got it from them but he does not have time for a placebo. I am sure it has been 3 1/2 years since onset of this disease and probably more according to a doctor from Boston I talked to. The worst thing is that the heredity type of Amyloidosis is not used for any clinical trials that I can see since it is so much more rare than the Primary kind. I do understand this as Dr. Solomon said that most people have the primary and need to be on clinical trials since there are more of them. They also do not have the bad gene (which it is) coming from the liver as in inherited. They can do another kind of transplant ex. stem cell or bone marrow as long as organs are not already attacked.

It is just so hard to believe. I am hoping they may do more biopsies to see where it is attacking and if it is. I know he had one of his stomach and there was alot of protein but not in the regular blood tests.He now has braces for his feet and legs so his foot drop is not as bad.
Question: Is Doc David still around? I saw a question to him regarding bowel problems and ed(erectal disfunction) plus some other symptoms that Bill has and he is the first Dr. to explain it in a past article . How many times I brought it up and I get this: Probably old age, or here is a perscription for it none of which will help. It is an autoimmune disease that goes along with Amyloidosis and also cidp and gbs. That area of your body is affected but I do not know if it can get better. Men just do not want to talk about it and doctors ignore it. And I hated to be the one to ask, but I do know they are symptoms for him. He has tried many things for the bowels and says he thinks it is better now but thinks it is from the trial pill he is taking. What ever it is he is more comfortable now.
HOpe he stops smoking as I cannot help him do that . I quit about 8 years ago and yes it was extremely hard but once you do I know I can never go back as I was very much addicted.
Will be back on after our appts.