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Hi - and welcome. I have a somewhat different story and point of view. I am a 73 year old moderately active female. I just discovered that I have HOCM this year! - due to some breathlessness and a murmur that had never been there before. Medication has been a huge helpt - I feel terrific and can do everything that I want to do (verapamil and jardiance so far, not camzyos). If the condition progresses too much then camzyos would probably be the next thing or septal myectomy. My point of view is that you are very young and there is such rapid advancement in this field that you may never need invasive surgery. So - while I am not a cardiologist it would seem very early to me to make this decision unless symptoms get to the point where they impact your lifestyle a lot. I live in Delaware and my condition was diagnosed here - but then I went to Johns Hopkins which is a COE. They did much more diagnostic work and have a terrific baseline now. Their decision to try the meds that I am on. Jardiance is a medicine for diabetes but it has been found to really help with HOCM symptoms. Of course, it does nothing to ultimately treat the obstruction but neither does camzyos - both treat the symptoms and jardiance is MUCH cheaper. Anyhow, I am only saying all this to say that a COE will be best able to answer your question and suggest the best and most timely treatment trajectory.
Replies to "Hi - and welcome. I have a somewhat different story and point of view. I am..."
Thats a great point you added! Each person is different and reacts differently to the medications via their activity levels and age!
Yes these medicines do not remove the obstruction but do allow the muscle to relax enough for better blood flow. That being said if your highly active with intense workouts septal myectomy may be the course of action such as my self!
Camzyos has allowed me to get active again but it does have its limits!
Being in 57 and do lots of intense mountain biking, i can put easy mileage in but hills induce my heart heart murmur.
Will be having myectomy in June
Thanks again for everyones input and sharing their experiences
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Thanks so much for your perspective. This also helps give another side to this. I think my decisions will ultimately come down to what Mayo thinks now before I make any decisions. I don't like being in a holding pattern, but I've become more comfortable with it the last few weeks.
I've watched a few podcasts with Mayo and Cleveland Clinic specialists and there are still some debate on proactive surgery since it's a mechanical issue. It seems to be on a patient by patient basis that those calls are made.
Regardless, I feel good knowing that my "case" is being reviewed by Mayo and that if I don't need surgery, they may refer me to the HOCM clinic there who can dive deeper into my info (and hopefully work with my insurance to get that approved). I'll take the flight and days of testing to get sorted out, that's no problem at all.
My specific issue that my local cardiologist has told me is that my fatigue symptoms from the medication are already at a fairly low dose AND my resting heart rate is low so doesn't give much room for other meds AND the pressure with activity in the "severe" end (70mmHg, although the scan showed over 200mmHg, but he downgraded it for some reason). It apparently doesn't leave much room for other treatments, other than trying Camzyos. I'm not sure of my comfort level with that option yet vs. surgery.
So now I'm very much looking forward to Mayo's assessment since they specialize.
Thanks again for sharing your story. I need a COE to analyze my case and feel better that this is starting to get in their process.