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How to decide whether to take Camzyos or have surgery?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 2 hours ago | Replies (40)Comment receiving replies
@doctorboo1 , I have exactly ZERO regrets about having open heart surgery!
The thing is...we are all different and each one of us will present with many of the same symptoms, but then we react differently to meds or surgery.
I was on at least 5 or 6 different beta blockers and calcium channel blockers, none worked. Camzyos wasn't an option because of the clinical trials.
But my HOCM was also very severe by the time I was diagnosed. I was misdiagnosed for several years with a variety of other heart conditions. Didn't have 'em!
The decision for open heart surgery should not be taken lightly. For sure it is a major surgery and anyone with any sense at all would be afraid.
It comes down to what you and your physician decide is in your best interest.
Having said that, however, you know you better than anyone, so always keep learning, always keep advocating, and always try and have an open mind about this.
HOCM is such a weird condition. There are days you are fine. Then days you can barely breathe or stay awake. I am impressed by your attitude and your physical fitness. That is your secret weapon in this newly diagnosed, unwanted visitor to your heart.
I was told by Dr Ommen at the Mayo Clinic, that is was very unlikely the obstruction would re-grow after surgery. After all, it took 62 for it to become severe, so most likely it would not cause issues like it did.
I still have HCM. We all will forever. So yes, there are some left-over symptoms that I live with. But being able to power-walk up a steep hill on my daily 5-mile walk is a blessing I will never regret having the ability to do!
Did I answer your question, or just ramble??
Replies to "@doctorboo1 , I have exactly ZERO regrets about having open heart surgery! The thing is...we are..."
@karukgirl I am 72. I don't have severe ohcm but I noticed at 48 yo the shortness of breath ON exertion and how I couldn't do workouts or hikes (steep spott) anymore. I attributed it to getting older. As years went on, I could do things like help clean/paint/remodel rentals. And carry 5 gal buckets of paint. Finally by 67, I finally started really digging into what was wrong. My PCP was no use and didn't ever do PFT for breathing or recommend a cardiologist. I dodged some bullets on the journey and ended up at a COE in Kansas City MO. I am on Myqorzo now, since March. I never got dizzy, chest pain, passing out, etc, so I would say it is not severe. It was ALWAYS the exertion part that got me. My septal thickness is 16mm. I am assuming I just don't meet the criteria for open heart surgery, or even an alcohol ablation (not my first choice imo). The dr did say that on myqorzo, there should be no additional thickening of the heart muscle and that it can improve/remodels the heart muscle. I also read, when you stop myqorzo, within 24 hours the effect reverses. Weird. At the cost of myqorzo at 108,000 a year vs open heart surgery, I don't really see a difference! The first cardiologist bunch I saw couldn't even diagnose the OHCM even after I asked the nurse about additional testing for more info. (since my problem started at age 42, I wanted to get to the root of it all) She said if the dr thought I needed them, he would have ordered them! Four of the geniuses discussed my results and flipped a coin between mitral valve replacement or a pacemaker. I got the pacemaker. They said chronotropic incompetence. Long story on that. Do patients not get a say on how OHCM is treated? I am tolerating myqorzo at 5mg ok so far but dr wants to increase it already. We changed metapropol from 100mg down to 50 mg bc of fatigue side effect. I said to just change 1 thing at a time. I know St. Lukes is an excellent med center and excellent reputation. I used to be able to power up steep little trails in my day! I tend to ramble. I am 73 in August and relatively healthy.
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@karukgirl Thank you so much for your response. I made it clear to my cardiologist that quality of life is critical to me. I didn't want to just treat symptoms, but rather address the condition itself. He was optimistic that the drug would do that but I'm not convinced.
All I've heard on mayo's and the HOCM websites are good about the surgery. Your info too. Im not afraid of surgery.