Update on Bill and Joan

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

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!

Joan,
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:)

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.
WithHope
WithHope

Joan,

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..

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