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Well you found the right place!
Im 57 yr old male and noticed i was having difficulties about 8 years ago with my running and biking. I would have good days then i would have days where i could not run 1 mile
At the time it was not uncommon for me to do a 30+ mountain bike ride or go for a 5 mile ride.
The good days got less and the bad days got more!
I would talk to my doctor about it and they said it was either something in the air or i may be having exercise induced asthma and i was getting up in age to consider slowing down some.
I finally quit running and just stuck to bicycling.
On some of my bike rides i would be so fatigued i knew something was wrong i would tell my doctor it felt like i had a hole in my heart that i feel like im not getting blood to my legs and felt like i was suffocating
Well oct i went on a bike ride and struggled couple days later i was in the hospital they said i had pleurisy and pneumonia
Gave me steroids and antibiotics sent me home
30 days later went on a short 5 mile easy bike ride, ended up in ER that night O2 was in the 70’s admitted me for 3 days ran a stress test on me said i had heart failure
Gradient was 122mmHg
At that time my wife talked me into going to mayo
Diagnosed with HCM with severe LVOTO
Rexommended septal myectomy but said lets get you started on camzyos to get you feeling better.
3 months on camzyos now
Bike ride in Jan 136 miles
Feb 140 miles
I have not done that distance in years!
Im scheduling surgery in June because my gradient is still at 38mmHg provoked
I would say if ukur active and they feel you need surgery consider at least camzyos to see how you respond! You can always do surgery later!
But dont wait till you go into heart failure like i did!
I wished i knew all this before i had the heart failure
I know this is long and i hope it helps
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Replies to "Well you found the right place! Im 57 yr old male and noticed i was having..."
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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.