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Hello. I am from Vietnam. In VietNam we can not receive any information about Amyloidosis. It is really new here
- This disease was first reported in my grandmother. Then my grandmother gave birth to 8 children. 7 out of 8 people get sick. 3 of them died, including my father
- Recorded symptoms include: enlarged heart, leg edema, persistent diarrhea. Doctors could not say exactly where the disease came from. Because almost every things has problems. But the heart is the biggest problem.… read more
I am 84 years old and have AL amyloidosis. Due to my bicycling records (100,000 miles in 18 years) I can identify the beginning of my amyloidosis as October 2020. At that point I started to have fatigue. Over time my fatigue increased and my VO2Max decreased. An early indicator which my doctors missed is too much protein in my urine. In June 2022 my family doctor acknowledged that I had a problem and started taking action. Late November 2022 a biopsy of my kidneys confirmed AL amyloidosis. Formally acknowledged early January, treatments started late January--6 4-week chemotherapy treatments. Now on monthly treatments. I feel great now, although I have to have my lungs drained of fluid on almost a weekly basis. No one knows what tomorrow will bring, but I feel like i could live another 20 years.
So Trn, note my above comments about urine and fatigue. If you indeed have amyloidosis, it is important to start treatments as soon as possible for best outcome. Of course we all are different, but perhaps this will be of use to you.
Stay optimistic. Vern
You’re not able to get chemo in Vietnam?
But @A MyAmyloidosisTeam Member. In Vietnam, The doctor told me I should prepare a lot of money to go abroad for treatment. Because there is currently no medicine in circulation in Vietnam. It is really terrible
Don’t put a number on it. Some people live upwards of 20 years. Everyone’s situation is different.
The symptoms are not obvious and can be easily confused with other diseases. So when I was sick. I can't live more than 4 years ? :(
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