Posted on 08/13/2004 8:30:43 AM PDT by The Game Hen
Please pray for my Dad, diagnosed this week with Amyloidosis with Restrictive Cardiomyopathy. You may never have heard of it. Most Cardiologists will never see a case.
He’s 66 and until recently, a healthy, active retiree. He began experiencing weakness, breathlessness and severe swelling. Doctors ran several tests but could not find a cause. They knew his heart was not functioning properly due to excessive pressure. In January, they removed his Pericardium.
He felt better for a few months but then his symptoms returned. Walking to the end of the driveway wiped him out. The Doctor found that his heart was so rigid it couldn’t pump like it should. Last week they did another heart catheterization with a biopsy.
The biopsy yielded a diagnosis. Amyloidosis is a buildup of mutant proteins in the organs. Though not technically cancer, it can be treated with chemo, steroids and stem cell transplants. There is no cure for this very rare disease.
How I wish they had done a biopsy 6 months ago! Dad may be too far gone for treatment. I wish I could convince my parents to get on a plane to Boston today where they have the best treatment in the world instead of MUSC.
I know he won’t make it to 70. He may not make it to Christmas. Please pray that he will be comfortable and at peace. Please pray for strength for his family. Mom and Dad are active in their Presbyterian Church but I’m not sure that his faith is strong enough to get him through this.
I also post this to seek any information fellow Freepers may have about this disease. I also hope that it might help anyone out there with similar symptoms. Some people don’t get a diagnosis for years after first noticing something is wrong.
Thanks for listening and God bless you.
you are all in my prayers.
I don't know a thing about amyloidosis...but the late Governor Carey of Pennsylvania had it. He was in good health and got a heart transplant for this, and since he was in good health, they also did a liver transplant to stop the liver from making amyloid...Ironically, the mayor of Erie PA had another form of amyloidosis too.
I join in prayer for your dad, you and all the family!
Oh my, what love your post shows for your dad. I will definitely hold him up in prayer. I know how difficult it is to convince parents to be pro-active in their care. I, too, would want him to go to a special hospital. He is still young and I pray he will fight. I will also hold you up in prayer because it looks the road ahead is going to be difficult. I hope that you can learn all you can about this disease.
May his faith be strengthened and the grace and mercy of Lord be with your family.
Carolyn
I am praying for you both.
prayers for your Dad's recovery and that he has the strength to go through any treatment available to him.
Prayers sent for your hero.
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.
Thanks for the update. I am praying for his complete healing.
Continuing my prayers
God bless you :o)
Your father is a brave man. I don't know how I would feel if it were my father. We all grasp at straws, but your father would rather accept the inevitable than have the transplant and face the reality of extended of suffering with a slim possiblity of a complete recovery. He has made peace with himself and now the difficult part is for you and your family to accept it. It will be heart-rending. I watched my dad linger and finally succumb to kidney failure. Not even dialysis could help him. Try to be mindful of how he feels despite your pain and see him through with this. Our wishes go with you. He will find peace and so must you.
PRAYERS UP!
Amen,........Infinite Grace and Mercy,.......In Jesus' Precious Name, Amen!!!
Your Dad and your family are in my prayers. May the healing touch of our Lord and Savior Jesus Christ restore your father to good health.
Thank you for the update. More prayers for your Dad, your Mom, and you. Give your Dad and Mom lots of long hugs!
I'm so sorry I can't be of help with information, but know that you, your loved ones and your hero are in my family's prayers.
I'll have most of Slapout, AL praying for you by tomorrow.
Keep your faith and look for a miracle.
Done. Stay strong.
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