Is There Anyone Else Out There With Cardiac Amyloidosis ATTR Wild With Heart Failure? | MyAmyloidosisTeam

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Is There Anyone Else Out There With Cardiac Amyloidosis ATTR Wild With Heart Failure?
A MyAmyloidosisTeam Member asked a question 💭
posted September 17, 2023
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A MyAmyloidosisTeam Member

69 year old just diagnosed with wild type amyloidosis ... on vyndamax for a month now. Thank you Tufts Medical in Boston for figuring it all out.

posted December 28, 2023
A MyAmyloidosisTeam Member

Yes, I have been on this journey for three years, and hopefully quite a few more

posted April 13
A MyAmyloidosisTeam Member

Yes i have wt ATTR-CM and heart failure. Six months of Vyndamax 61 MG and starting to notice a good difference in all my other symptoms. I’m an active 80 yr old male.
Recently had an Ablation to correct Afib/Aflutter and to create a new electrical path for the QRS pulse to flow to keep me in sinus rythym. The wave form seems a tiny bit wider than normal at times.
I still get tired by 4pm if I don’t have a nap. With a nap i am good until 11:00pm. Shortness of breath almost all gone except on high stairs.

posted November 10, 2023 (edited)
A MyAmyloidosisTeam Member

I have the wild type and taking Vyndamax

posted November 27, 2023
A MyAmyloidosisTeam Member

My name is Jim Jones. I just turned 80 years old and was confirmed both in Houston and the Mayo Clinic with having the wild type amyloidosis ( thanks to a heart biopsy ).. From 2015 to 2019 I saw numerous physicians, each of whom said I had COPD because of my difficulty in breathing.I have been on tafamadis since late ‘19. Next month I will be completing a three year clinical trial with Helios
B. My heart failure surgeons say that I am now in stage four ( the last stage ).One indicator is my labored breathing even in a rested position. I will be enrolled in a one year study with a new drug soon.

posted September 22, 2023

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