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I Think We All Want To Know About Time. And The Progression That We're Going To Go Through.

A MyAmyloidosisTeam Member asked a question šŸ’­
Columbus, OH

Does walking finally stop?. Do we continually get weaker? Do we lose the control to urinate? Is living in the presence now just living with the uncertainty of the progression? Will it finally take us when we don't have a heart transplant?

December 3, 2022
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A MyAmyloidosisTeam Member

Great Question.. I don't get any solid answers from my physician about that. I think the progression is different for everyone, and depends also on other conditions you may have. Shortly after my diagnosis, a cardiologist asked me what I know about the disease. I said, from what I read, I am likely to be dead in 6 to 7 years. She said, if it gets that bad you can get a heart transplant. I was terrified. She made it sound like it was just removing my appendix or some simple operation. Of course, you can eventually get too old for a heart transplant too.
I'm 63 and was diagnosed in January '22. I bike or hike (slowly) each day. My goal is to feel about the same in January 2023 as I remember feeling last January. And to do that year, after year.
I do the same each day.
If today I feel like I did yesterday, then, I didn't get any worse.. At least I tell myself that.. It keeps me motivated.. : )

December 13, 2022
A MyAmyloidosisTeam Member

Hi Eric, Thank you for sending me a hug that is the best medicine there is. You are only a youngster at 67, I am sure mine has been coming on for at least 15 years so as long as you take care of yourself and follow the rules you have many more years ahead. I am not on any medication for amyloidosis, just water tablets, paracetamol and codeine, the NHS said the other drugs were too expensive. I am being treated for my heart failure but that too I have had for several years.
I still drive my car, I don't go far on my own but it gives me my independence. I have never done enough walking, as I recall when I was in my twenties, my children used to say you will always find mum in the town as my car was right outside the door of the shop I was in. When I rode a bicycle, they used to say they had never seen a bike move so slowly and stay upright.
So please don't get worried I was never fit but I am still here.
šŸ™ƒ xxx

December 5, 2022
A MyAmyloidosisTeam Member

Just talked to my cardiologist at Cleveland Clinic about this, this morning. Iā€™m 72 with wild type and he also mentioned a heart transplant as a last resort. But he said with no symptoms now except breathlessness on exertion, and the fact that Iā€™m taking Vyndamax which keeps protein cells from folding into amyloid deposits, I could feel the way I do now for years; which is to say, keep as healthy as possible otherwise and this might not be what kills you in the end, after all.
Donna in Erie, PA

April 24, 2023
A MyAmyloidosisTeam Member

Hi, You have asked the question I too would like the answer to. I myself was diagnosed with Cardiac ATTR amyloidosis wild on Jan 31st 2022 and am finding since then my walking has become a lot weaker, but let me say, I had started feeling weakness in my legs two or three years previous to that. I have suffered with breathlessness upon exertion for as long as I can remember, I have also had Angina and heart failure for years which I had learned to live with.
I was told by my specialist in London, UK that towards the end I would get weaker in my legs and find it more difficult to breathe without exertion, my breathing which would get a lot worse. I have no trouble with incontinence.
I believe it is a waiting game during which you have good days and bad days, but I am 81 years old, 82 in February so it doesn't necessarily mean you can't live a long life!
All we can do is try to be strong and pray that a cure will soon be found.
God Bless You xx

December 4, 2022
A MyAmyloidosisTeam Member

Great reply Rick. You are right

December 13, 2022

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