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Side Effects of Mavacamten (Camzyos)
Hypertrophic Cardiomyopathy (HCM) | Last Active: Sep 14 9:28am | Replies (97)Comment receiving replies
You learn to live with certain things. I am only on Metropolol...no more surgery, no more meds, no more clinical trials. I am done.
The only thing I feel is tiredness easily, out of breath if I excert myself...I basically don't push myself too hard. I know my limits after 9 years. I walk slow not to get winded. I climb stairs very slowly.
The first year was the hard after surgery.
The second year was the hardest because my husband of 49 years passed unexpectedly. It did effect my heart with the trauma. My BNP went sky high. It went as high as 1379 caused by Takotsubo ( stress hormones) The numbers came down after a few months. They called me from UPENN right away when they got my blood results to ask me what was going on. It's supposed to be under 100. '-(
I am stable now.
Any other questions you have, let me know.
I have a questions for you. Did you have surgery or just meds and what kind?
Replies to "You learn to live with certain things. I am only on Metropolol...no more surgery, no more..."
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@deanna529 Everyone needs to listen to their bodies as you do so well! I am sorry for the loss of your husband, yes, one of the biggest stresses we could ever have in our lives. As a scar of surgery heals, the scar of loss is always there on the surface.
Yes, stress, whether physical or mental, has that effect on BNP, mine, normally for me in the 300s-400's, went sky high over 1000 when I had Lyme in June and July 2025. While my cardiologist and others on his team were concerned, he said, "wait and see what the Doxycycline does." This antibiotic prescribed for 21 days to combat the Lyme brought it down within a week.
My HCM was asymptomatic for about 20 years from diagnosis until one day (during the night on the way to the bathroom) in February 2022 when suddenly I had a syncope. I was an active walker and bike rider, slowing down a bit, I was in my mid-70's along with my obstruction growing worse. Was taking Verapamil since diagnosis. In July 2022, I went to Mayo for a septal myectomy and am on Metoprolol SUCC 50mg each morning ever since. After a couple of post-surgery complications - leg blood clots - Eliquis for 5 months - arrythmias - ICD named Buddy - all fixed by 2023, all has been very well from then on. I will never walk as fast as I did, but I do 10,000 steps almost daily and gym 3X a week. That's the main story.
The hundreds of people following these discussions each have a unique story such as we do. Most important, sharing our stories shows that HCM is chronic, we are fortunate to live in a time where it can be managed, and we can adjust our lives to live our best lives possible.