Please post your replies to The Game Hen
The Game Hen, my prayers going up for your father, his wife and the entire family.
Blessings,
trussell
If you want on/off my prayer ping list, please let me know. All requests happily honored.
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.
Your dad, and you and your family will be in our prayers. May he find strength and peace in the Lord.
We will be praying for God to pour out comfort on you and your mother and father. My father (68) was recently diagnosed with Alzheimer's Disease, so I understand some of the fear and shock you must be feeling. Our Father God is always there for us, even when it doesn't seem like it!
I'm so sorry to hear about your father. I don't pray, but I will keep him in my thoughts and hope for a good result.
Prayers sent
Here's prayers that he gets the best care possible. Every day is a gift.
Here's my prayer for your dad's full recovery. :)
God bless him and your family.
Prayers for your father and your family.
More prayers aloft for your Hero!
Your father and your family will be in my thoughts and prayers. God bless.
Prayers just sent...
Prayers on the way.
Your Dad has My prayers ....as well as you and your family
(Romans 10:17)
The book/letter of/to the Colossians.
Prayers on the way.
My wife has a similar disease, multiple myeloma. They are so closely related that amyloidosis and multiple myeloma have the same basic treatment options. Treatment for the damage caused by the amyloid deposits is different, but treating the source of the amyloid is the same.
Because amyloidosis often accompanies my wife's variant of multiple myeloma, I am quite familiar with both diseases. If you want info or just a shoulder to cry on, send me a freepmail.
Prayers for you and your family.
Praying.
My thoughts and prayers go to your father and your family
God Bless
Prayers sent.
I can't tell y'all how grateful I am for all your prayers and good wishes!
Between this and worrying about Charley's impact on the SC coast, I think I'll go get under the covers and have a good cry until It's time to pick up the girls from school.
I haven't cried until today.
Y'all have definitely been a blessing for me!
You have my best wishes for your dad's recovery. I hope he finds comfort...both physical and emotional and that his doctors will be able to steer him back to health.
Thank you for sharing his diagnosis. Hopefully, it may help others.
Stanz
Thank you.
I recall once seeing a Free Republic list of Member's occupations. Is there a way to ping Freeper MD's?
Prayers.
Please post your replies to The Game Hen
The Game Hen, my prayers going up for your father, his wife and the entire family.
Blessings,
trussell
If you want on/off my prayer ping list, please let me know. All requests happily honored.
Thank you for the ping.
Prayers offered for your Dad.
Prayer bump
Praying.
I have no doubt that his greatest joy in life is knowing that he is your hero.
May the Lord bless you with healing for him.
Don't know how up-to-date this is, but I had it bookmarked.
http://www.freerepublic.com/forum/a3b4bdaa63527.htm
Thank you for your post. Your father's symptoms sound very much like those of my mom. Her doctors have been able to come up with nothing - despite test after test. I've sent along a bit of your message and a couple things I pulled off of WebMD, etc.
God Bless your father and your entire support system of family and friends. 0:-)
I hesitated to post this but hoped it might be helpful for others experiencing the same thing. This diagnosis has been painful for all of us but it's better than being sick and having no clue what's causing it.
Offering my prayers
Prayers for you and your family
Prayers for your Hero - may the Lord bless and comfort him and you, and your family.
Prayers on the way!
Prayers sent for your dad and the entire family.
Your father is in my prayers for complete healing.
Prayers to your Dad and you, TGH. Any chance at all for a transplant?
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
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