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Discussionafraid that I may have Hypertrophic cardiomyopathy
Hypertrophic Cardiomyopathy (HCM) | Last Active: Jul 7, 2025 | Replies (17)Comment receiving replies
Replies to "If you don't mind sharing, what diagnosis did they think you had before you were finally..."
Left ventricular outflow tract obstruction (LVOTO) refers to the obstruction of the blood flowing out of the left ventricle.
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HCM has Been something i have all my life according to the Mayo Cardiologist!
I pretty much lead a normal active life! I knew from my years of playing football something wasnt right though, after failing a football physical because the doctor said i had a heart murmur my mom drove me to another doctor across stateline and he passed me. my heart would go into fibrillations during practice and games and it would last for hours! I never would say anything to anyone afraid of sitting! These lasted up into the Navy anytime i would make fast sudden moves my heart would take off.
It finally wasnt much of an issue as i got older.
By the time i was in my late 40’s i was active mountain biker and runner
At sone point i started suffering on my runs, i would go for a run and couldnt complete it, it would be a bubch of good runs and then i would have a day to where i could not do a 1/2 mile! Hard to breath legs would get tight, jaw pain! I started talking to my primary doctor about it over the next few years and letting him know these runs are getting harder more bad days than good days, just looking at my vitals i looked healthy he said it could be allergies, or exercise induced asthma or im gettig up there in age to slow down some when it happens. I finally quit running and stuck to biking but it started doing it there too!
Fast forward to 2022 went for a easy walk one morning and had to take several breaks all the same symptoms from above
Went to ER they ran all kinds of test over 3 days and basically the cardiologist after doing ECHO with no stress said i was showing early stages of cardiovascular disease. Veins leaving heart were too narrow
Put me on a beta blocker called carvedilol
After a few months went back for follow up and i told the cardiologist my symptoms have gotten worse being on the medication! He said i needed to stay on it because they needed to dilate my veins leaving my heart!
Come sept 24 went on a 13 mile bike ride and really struggled! 3 days later was hurting in chest, ribs, and traps went to see my doctor who said i had pleurisy, ran ECG on me since i had chest pain did not like the reading sent me to ER
Again 3 days in hospital they didnt find anything and released me, they called me that evening and said i had pneumonia!
30 days later felt good enough to go on short 5 mile ride rode real easy
That night i could not breath went to ER O2 was 72% diagnosed with heart failure!
Had a smart doctor in there that told me she looked at my history and said i needed to go for a second opinion!
Called mayo they got me in fast!
Diagnosis HCM with severe LVOTO left ventricular outlet flow obstruction
He said i had been misdiagnosed for years and carvedilol was the wrong medicine to put me on it actually exasperated my symptoms!
Doctor told me with my active lifestyle surgery was my best option Septal Myectomy! He put me on Camzyos to get me stronger and feeling better for 5 months before my surgery.
Im 17 days out from my surgery and the surgeon said it was the right decision!
He said i will be doing things i havent done in years!
So many of my symptoms that i would talk to my doctor about and it was missed all these years!
Long story but its been a long several years of frustration!
Looking forward to the future:)