← Return to HCM-ers: Introduce yourself or just say hi

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@estefania03

Hello. New to the Mayo connect. Previously my dad had an echocardiogram done (51 years of age in 2000) because of 30 years of uncontrolled high blood pressure... that doctor suspected LVH then. Fast forward to 2017, my dad has his first bout of Afib and a full cardiac work up is done. The MRI radiologist suspects HCM and refers him to a larger cardiology group in our state. My dad has no known family history of HCM, but had the 30 years (age 20-50) of uncontrolled high bp. The cardiologist wasn’t convinced either way (bp related or HCM) so he was referred to a genetic cardiologist who ran some tests. No known mutations were found. I had an ekg, stress Test and echocardiogram done when I was 28 (7 years ago) because I had some really bad anxiety (didn’t know it was anxiety at the time) and everything came back normal. I have had a few ekgs since (all normal). My brother had an ekg done, normal also. I had been ok with my dads diagnosis as inconclusive but now it’s starting to worry me again (that anxiety!) mostly because I have a young son who is very active and I don’t want limitations for him. Do you think I need to press my to look into it more or trust that the high bp could be the culprit? Thank you.

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Replies to "Hello. New to the Mayo connect. Previously my dad had an echocardiogram done (51 years of..."

Hi, @estefania03, glad you dropped in with us at Mayo Connect, making you and me a party of two facing similar problems. I tend to suspect that hypertension is the cause of your family's cardiomyopathy, because your dad's situation and mine are similar, and I'm a 45-year practitioner of antihypertension therapy.

I had some difficulty qualifying for a new life insurance policy back in 1974 because of high blood pressure, then began round-the-year medical therapy for it 10 years later (age 50). After 20 years of fairly ordinary medication, my new HMO took a good look at my heart and found asymptomatic hypertrophy (their diagnosis was LVH as well). Other symptoms emerged over a few years, and the HMO referred me to a nephrologist, because my hypertension seemed not to be mainly a heart problem that would be relieved with the old medical protocols. My nephrologist diagnosed that part of my problem is Liddle Syndrome, a genetic mutation of the kidneys causing them to slough off potassium, and she solved that with a potassium-sparing diuretic. Then the cardiology team started looking at my heart again. We ran through all of the popular tests, except cardiac catheterization, confirming my cardiomyopathy but deferring therapy for want of significant symptoms.

Along came atrial fibrillation about seven years ago. It felt asymptomatic, showing itself only on my EKGs and blood pressure readings. But standard therapy with A-fib calls for an anticoagulant to prevent blood clots. I chose Coumadin for two reasons: 1) it involves regular lab tests monthly and 2) there is a ready antidote for it in emergency situations. By good fortune, my A-fib has never rattled my chest or caused any discomfort there. But it hit me the other way -- a small blood clot, apparently formed in my heart, blocked a capillary deep in my brain, causing a "small stroke." Physical therapy has helped overcome the stroke symptoms, and I feel rather normal now without any sense that my heart is working extra hard to overcome the resistance of the thickened ventrical walls.

My medication is different in only one respect now: I take Carvedilol, a beta blocker, to steady my pulse and ease the power my heart needs to drive blood out in my system. Otherwise, its Coumadin to prevent blood clots, my potassium-sparing diuretic, and Lisinopril, a kidney medication for my hypertension.

I once thought I'd relentlessly pursue a cure for the problems of my circulatory system, whatever the cost or the inconvenience. I long ago gave that up and developed plans for anticipating what might pop up and threaten me, so that I'll know exactly what to ask for at the emergency room if my wife ever has to call 911 over my heart problem. Life is a lot more calm and predictable, except for the coronavirus that's taking over now. Martin