Update on Bill and Joan

    • Anonymous
      November 24, 2008 at 3:02 am

      Not really sure what to say except I read over all the last comments and just cried my heart out. I know how caring all of you are and I appreciate all of the support. I have not gotten on the amyloidosis site yet because it is not as update as you are here. Just a note . Also I do not feel that I have learned anything more as there is not much we can do with my husbands diagnosis. He is on a pill that they are now using as a trial although we do not know if it will slow down the progression but if given by the hospital he could have been given a placebo instead of the real deal. Anyway that the one good thing. The bad is that only treatment is a liver transplant and I have been reading alot about them and am somewhat discouraged. My initial feeling has been that he can live longer (they say 5 to 10 or 15 year upon onset) and I am sure he has probably had this for sure 3 years and maybe before that without symptoms. But if a transplant it may not work at all or in time he could be gone long before due to rejection or other complications. I guess I did not expect what I got from him today. He said he wants to do the transplant. He has never discussed this with me although I know this is his decision and not mine. I do not know why he decided this . I am afraid to ask or maybe interfere with his decision as he may think I have little faith which I can attest to. I do not know how to ask him without sounding discouraged.

      We are going to Mayo in December so maybe that will help us both. We need to know if any organs or affected yet. If they are they may refuse to do a liver transplant also he is still smoking. I know from reading that he would have to quit and he does not want to. He was upset with me that I brought up smoking. I told him that he should want to know.I have a very stuborn patient here and I have to push as you all know to get him to do things he must do. Like 2nd opinion-it took forever it seems,change our trust since we moved. Some times he just seems like he is living in another world.
      My son had asked him to call Mayo to get another opinion and maybe even more opinions other places. Of course he did not do it . I did. Can any of you tell me from your standpoint as the patient why he acts like this.

      I would like to see a couple of other doctors too. Two of them , one from Columbus Ohio and one from Indianapolis both had done the study on his uncle who died of this disease. I am trying to see if we have time for it,or maybe even to talk to them. Well enough about us.

      I want to hear from some of you like: Linda H – did you ever get to Duke? and Dawn how is your son doing. I know the last I read he was having some problems. And Hope – you know so much, how do you deal with every one else and still take care of yourself. Smiley,espersen, Norb,Angel, I have been gone and cannot think but I know all of you have been so supportive and it has been a wonderful site for me. There are too many names I cannot remember just now but you know who you are and I thank you from the bottom of my heart.
      Thanks a million

    • November 24, 2008 at 12:21 pm

      hi Joan,
      So sorry all of this is happening. glad you were able to get Mayo scheduled. that will be the best of the info. About the transplant, you are right to leave it alone. It is his decision and your children might not see things favorably if you should push one way or another. About the smoking and the transplant, Mayo will tell him, not to mention he knows. If he refuses he controls his destiny. Kevin is doing….. lets just say confusing. not sure what to make of things. Something else, you don’t know the time frame. so now that Mayo is scheduled, sit back and enjoy each day. If he wants to smoke let him, he knows what is right and he knows your feelings, if he can’t quit, he can’t. I can’t stop eating poorly even though I know I cannot leave Kevin behind. Addictions are tough. If you drop it you can spend good moments together with family over the holidays. YOU can just take a back seat and coast along until Dec. How are you and your daughter? pm if you like.
      Dawn Kevies mom

    • Anonymous
      November 24, 2008 at 7:13 pm

      Hi Joan! Good to hear from you again but hate to hear what you are going through. I finally got into Duke and the Duke Doctors did a really nasty EMG/NCV on me. Have had several of them but this one was the worst one I have ever had.
      My CIDP is related to my Lupus. And lucky me starts IVIG Rituximab tomorrow. Dread it! But if it will make me better, I’m not going to complain. I hope!
      Bill may be having some memory problems because of his illness. I know with my illness I get forgetful at times. Brain fogginess!
      That quiting smoking! He has to get ready for that sugery and the stronger he can be the better off his recovery. So he really needs to quit! But getting a person to quit is hard doing.
      I am so glad you came back in here. I have missed seeing you around!
      Just wished things could be better for you and Bill! Certainly not easing facing right now! Hugs Joan! Glad to see you back!

    • Anonymous
      November 24, 2008 at 9:30 pm

      I think you have your plate full.. You don’t want to be a nag.. And you don’t want to p@ss Bill off… Sounds like my wife and ornery me when I was sick… Your husband has a lot of decisions to make, and for better or worse, some decisions are gonna be made for him… Healthy lifestyle choices offer him the best chance to recover and live…:) We know what bad choices can do to us as well…:( . Mayo is the best in the world for transplants… , 🙂 and I hope the best for you guys.. I really hope that if your husband wants to be a fighter, and stay on this planet with a chance for quality life, he needs to make those lifestyle changes now! Smoking is the toughest habit there is, and the damage is continual…. But we all know that….I’ve had a family member that had a liver transplant (at the Mayo) twenty years ago and doing great… so I know all too well, what is expected from you guys, as well as how great they are…. I hope it all works out…. In many ways we still control our own destiny…. Dean:)

    • Anonymous
      November 25, 2008 at 3:45 am

      Joan and Bill, I just want to say keep holding on and don’t get too discouraged. You are still early in trying to figure out how to live the rest of your lives after this earthquake has hit. I understand what the others have said, but I would not say exactly the same thing, because it seems to me terribly important to talk about liver transplant because the decision to do this will have a huge impact on both of your lives for years. You cannot make the decision for your husband, because there will be a lot of tough things that only he can do like quitting smoking; nor should you let your fear of a negative outcome overshadow the decision because he might resent you. However, if he goes to liver transplant, both of you will have to live a life dedicated to this for a long time–when waiting, when in the hospital, and when being careful about all the rejection medicines and medical tests and follow-up visit. Often people are away from home a long time. I do not say this in anyway as discouragement. If this is what is wanted, it works and I have seen quite of number of people (children though) living wonderful loves after liver transplant and heard about a lot of adults. It is not a step to take lightly, though, nor without dedicated support from the person closest to the one getting the transplant.
      Men and women are very different in how they approach health issues and medical interactions. Lots of guys are uncomfortable with asking questions or dealing with the emotions of illness or the possibility of death. I am not saying this is everyone, but it is more common in guys. It seems to me that you are the asker, the investigator, and the facilitator in your couple. This is a strength you bring to the couple and a huge help to your husband whether he “knows” or acknowledges it or not. It also is my impression that he is the rock, the stablizing force in the couple and that all your doing and feeling helps him to be still. It just seems to me that it would help both of you to talk about the situation. You do not have to sound negative or fearful nor like the decision were yours, but it has to be an “ours” decision by its nature and you need to know if that is what he wants to do to be able to better help get the information and ask the questions and feel the worry that does help him. Do you see what I mean?
      I am just a person, not a counselor or anyone trained in all this, but I do work with children with life-threatening illnesses and their families and know how important that it is for a family to go together through tough times and how important each person’s contribution to making decisions is–no matter how different it may be. The families that survive having a child with cancer are those that work together for the health of the ill one and for the support of the others. This, like a liver transplant, affects almost every aspect of a family in little and big ways for a year or more and continues in less serious ways to affect the family for the rest of the lives of all the members of the family. This stuff is serious. this stuff is scarey. But people get through it if they stand together.

    • Anonymous
      November 25, 2008 at 9:17 am


      With due respect to Withhope, I didn’t want to sugarcoat my message to you regarding your situation.. You have pretty much laid things on the table, and I think you know the situation, and what is at stake.. Like I told you, my family member went thru all this stuff, and his life was in the balance.. Mayo expects a lot, and returns a lot… I just was hoping to make clear, from my previous message, how the system works, and am praying that things work out for you guys! Take care..

    • Anonymous
      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.

    • December 3, 2008 at 4:49 pm

      Best wishes Joan, will be thinking of you.
      Dawn Kevies mom