Connect
← Return to How to decide whether to take Camzyos or have surgery?
Discussion
How to decide whether to take Camzyos or have surgery?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 2 hours ago | Replies (40)Comment receiving replies
@walkinggirl Hi Linda, thanks so much for sharing your experience! I've been reading everything i can get my hands on since my diagnosis. Including overseas studies.
My cardiologist is with Presbyterian Hospital but have an appointment at UTSW June 1.
My doc is clearly a drug guy but UT is a top surgery hospital so my plan is for the 2nd opinion. I have an affection for Mayo's since I grew up in the Midwest and have a relative who works there.
I have not heard the data that Camzyos effects wane but noted few long term studies at all. Im glad to hear you are happy with the surgery. No one has been able to tell me if the enlarged ventricle wall can grow back or whether the fix is permanent. But, it sure seems to be the best option if you want to get back to doing the stuff you used to do.
This hit me hard because I was so active, and so are my brothers in their 80's. Mom lived to 98, several in her family were over 100 and still sharp. Women on my dad's side made it into their 90's too. I'm spoiled! I expected a much longer active life and refuse to back off.
Thanks again for sharing. Im not quitting even if I buy some time by taking the drug initially.
I'll look fir your face on the web page!
You asked if I had symptoms before. Last fall I was dealing with fatigue but no chest discomfort or shortness of breath. I thought the fatigue was lack of fitness due to slacking off on exercise. The SOB, etc started last month.
Even now, if I get out and walk, I feel better. Fewer symptoms when I exercise. Go figure? Lol
Replies to "@walkinggirl Hi Linda, thanks so much for sharing your experience! I've been reading everything i can..."
Connect
@doctorboo1 Where is UTSW? I am not familiar with those initials. Where is your Presbyterian Hospital? I am admiring all of the research you have done in order to work with your medical team to arrive at a plan and your knowledge helps to generate good questions. From what I have read, the surgery done at an excellent place, a COE such as Mayo and others, generally does result in a permanent fix. I went to Mayo, nevertheless, that concern is there in my mind, too. I think "they" just don't know. As you probably know from your reading, HCM is inherited, some of your long-lived family members may have it but are lucky, they just may be asymptomatic. Do get genetic testing, if the gene is found (mine is among the undiscovered), your generation and younger can be screened for it. I am so glad you are dealing with this and looking forward to a very long and productive life.