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Thanks to all for your prayers and good wishes. I haven’t posted any updates because we have been in limbo until yesterday when Dad had an appointment with a specialist at MUSC. They checked into a hotel so they could see a little bit of Charleston.

We knew his condition is fatal but we had no idea what the treatment options are or how long he could expect to live. He’s lost a lot of muscle and has swelling in his legs and middle. Walking 10 feet exhausts him. Food has no taste and he can’t eat more than a few spoonfuls at a time. His hands are cold as ice.

At MUSC, we were startled to discover they considered him a potential heart transplant recipient.

Dr P. was wonderful. After asking a lot of questions, he told us more about amyloidosis and said most patients survive 6-8 months. I asked him “6 months after symptoms start or 6 months after diagnosis?” When he told us it was after diagnosis Dad said, “If I just hadn’t had that biopsy, I could have lived forever.” The doctor told us Dad could live for several years longer if he had a heart transplant and a bone marrow transplant.

Mom and I wanted to pursue the transplant. We had Hope! We knew it would be difficult, but we thought it was worth it. Dad needed to think about it. I bombarded him with every argument.

"I say we do it. Don’t wait two weeks for the next visit. Let’s admit him tomorrow for all the preliminary tests."

"Yes Dad, it will be difficult but what you’re doing now will be difficult. Why not endure difficulty and have hope?"

"Imagine! you can do this in South Carolina! Less than two hours from your home and minutes from my house. The doctor told us MUSC has the shortest wait of any center in the country. You won’t have to move out of state for treatment."

"Just start the process Dad. You can always opt out later if you want to."

"Dad, if you decide not to get a transplant, I can bear it. I just want you to be at peace with it."

"Do you know what the worst irony of this is? YOU ARE NOT A HARD HEARTED MAN!"

Dad stayed quiet. Just before I left I told him I loved him and would support what ever decision he would make. We planned to meet for breakfast this morning.

I was so happy last night! The news could have been so much worse. Now we knew what to do. While I was out to dinner with friends my parents abruptly checked out and returned home. I stayed up last night and brooded. I remembered that my Dad, a stoic Midwesterner, has always planned to refuse extreme end of life treatments. Dad won’t even consider using oxygen or a wheel chair. They left because he was afraid I would argue or get hysterical when I heard his decision to reject the transplant option.

I called Mom this AM and told her I knew what he wanted to do and I would support him. She couldn’t believe I had intuitively figured it out but I know they are relieved. I made her promise to call Hospice this week. Don’t wait!

I’m so glad he went to MUSC! It comforts me to know he was given a choice. I plan to spend as much time as possible with my parents. I’m lucky I had the opportunity this week to tell him how dear he is to me.

Dad is so much more peaceful with his illness than he was when I first started this thread. Please continue to pray for him and the heart broken three women and three little girls that adore him.

Please learn what you can about Amyloidosis and spread the word. Don’t assume your doctor knows all about it. This cruel disease is rarely diagnosed in time. Learn more at:
Amyloidosis.org.

Thank you and God bless you!

Lee’s daughter.