Christine, please listen to Theresa! I have people in my support group that are still alive, and doing ok after many years. Everyone is different! Hopefully he is seeing a Amyloidosis Cardiologist, at a center of excellence. Not all cardiologist know about new treatments.
Doctor was concentrating solely on amiloydosis and failed to spot heart problems.Had to have Pacemaker fitted and initially felt a lot better but 3 weeks in I'm not so good
Yes it’s great we got early diagnosis and after thourough testing by cardiologist he has no symptoms in his heart yet… Do you think it’s possible he never will or is it inevitable?
Also cardiologist said no treatment available until he has cardiac symptoms! Really?
Christie please don’t do that to yourself and put a number on it. I know it’s hard. Some people live 6 months, 6 years, 16 years. 5.8 is just an average. Live each day and try not to think too much about what’s ahead. Try to take care of yourself as best you can. Make sure to keep moving! That’s key. Also there are many meds and treatments on the horizon so you never know. Make sure to read updated material. Even material that’s 2 years old can be outdated.
Sorry didn’t realize it was your husband… it all applies to him ❤️🩹❤️🩹❤️🩹
He seems to have been diagnosed very early that’s great news. That’s the key with all of us. Early diagnosis and treatment!
For stage 1 ATTR amyloidosis, where biomarker levels of both NT-proBNP and eGFR are normal, people live an average of 5.8 years after being diagnosed. This is considered a relatively favorable prognosis compared to later stages of the disease.
Wild-type ATTR amyloidosis generally has a positive outlook, with studies Show Full Answer