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This is really helpful to hear your story, thank you so much for sharing. I'm an active guy who is at the gym 5-6 days a week. At least 30 min of cardio and 30-45 min strength training, certified (but not practicing) as a personal trainer.
I got Covid last year in Feb 2024 first time, went to urgent care (on the advice of my wife) after covid recovery because I still felt really bad. Urgent care made me aware of a murmur that had never been heard before.
Fast forward a few months of worry and an echo confirmed HOCM with LVOT around 60mmHg at the time. I continued to have fatigue and little chest pains, but nothing major. Then in November 2024 I ended up in the hospital with sepsis (from a sinus infection some of the doctors think). The Echo while there showed a higher gradient but I was under significant heart stress with the infection.
They finally did a stress echo a few weeks ago and my gradient was still at 70mmHg with activity. Unfortunately my resting HR is between 40-50bpm on metoprolol so there isn't much room to lower my heart rate more via medication. So while not urgent I was told that surgery is in my future due to the high likelihood of symptoms starting up more in the next few years. I mostly am still having general fatigue with the minor chest pain/palpitation feeling once in a while. No arrhythmia though.
Being so young still, catching it early, and with two young children that keep me busy, I am considering getting this done earlier than later so that I can worry less with the years ahead. I really don't want to wait until a major episode if I don't need to.
I am so thankful to have found this group.
I also think I have a battle ahead though of trying to get this approved with Kaiser because I'd like to go to a COE like Mayo Clinic.
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Sounds like we have had a lot of the same path leading into this.
What is your resting gradient?
Mine was 48mmHg
Now its 10 with camzyos
I was told that HCM is what you hear of young football players and basketball players dyeing from!
I played contact sports and remember my heart racing away for hours and would never tell anyone for fear of not playing!
Symptoms i had early on too was after eating a meal i could not go exercise at all in fact if i knew i was going on a bike ride i would not eat till afterwards!
Drinking a beer and trying to do work around the house would not happen either!
Walking up hill after a meal or after drinking was challenging as well!
I would highly suggest going to mayo or big teaching hospital about your conditions!
I was told that there is only a handful of surgeons that can do this surgery effectively and two of those surgeons are at rochester.
My hospital tries metropolol and verapamil on me after my heart failure neither one worked!
Not sure if i mentioned this earlier but my mayo doctor said i had had several heart failures, basically every time i was having issues with my workouts was a heart failure which is the hearts inability to move enough blood thru the body!
Talk to your dr about camzyos vs surgery
Also HCM is considered to be genetic so Mayo will do a genetic testing as well
This may qualify your first line for genetic testing to see if they have the gene
Camzyos has been proven to keep people from having surgery.
The protocol to stay on camzyos is huge!
1st 3 months echo each month
If you do well then they move it to echo each qtr for 1 year
If you still do well they do echo twice per year!
Its expensive for me to drive to phoenix every month 450 miles 1 way stay 1-2 nights in hotel then drive back home!
Plus camzyos is expensive
$9000 per month
But mayo helps find ways to make it affordable
My insurance picks up $8800 per month dollars and camzyos gives you a copay card where they pick up $90
So i pay $10
In my case camzyos has given me my life back while awaiting surgery!
Dont hesitate to reach out for more questions