HCM-ers: Introduce yourself or just say hi

Thank you for your reply Martin! It feels better knowing someone else is in a similar situation! You do sound like my dad, he too found out about his high blood pressure around 1970 when he was drafted and he failed the physical. He tried to sign up for the armed forces after he finished college but failed the physical again. He always had a bit of a weight and diet issue, and his siblings do have hypertension issues as well so I guess that does run in the family. I guess he never did anything about his blood pressure until years later. He, too, never had any symptoms of a thickened heart (he knew he had it from his echo done at age 50 just to see what his high bp had done), or any other cardiac symptoms, until the first time he had AFib at 67. He didnt know what was happening so that was what prompted the doctor visit. Now if he goes into it he can tell but it doesnt bother him enough to stop what hes doing. I think it wasnt until he and my mom moved down to South Carolina (where we are now) that he really got his bp under control (hes way more active now in the warm weather! Were originally from Ohio). I am glad that you were able to recover from the stroke, and that you have figured out what is working to control your blood pressure!! Thank you for chatting! Stay safe during the covid-19!

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

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.

I have HCM and Afib....I have all sorts of skipped beats, hard heart beats, fast beats, fluttering etc. I can't tell which is which. I only get to see heart doctor once a year and also an echo cardiogram, but this year will just be a phone call chat. I'm on Eloquis, lisinopril, metoprolol 100mg 2x day. I'm having a hard time distinguishing which is causing the problem that I'm having to try and explain it to him when he calls.

Hi...I can't remember my name of this site....

Thank you, I appreciate that!

Hi every one nice to meet yall here.

I really enjoyed reading all the positive things you,ve done, probably bcuz after leaving corporate I followed a lot of these same steps. Very refreshing .

I started avoiding processed foods, sugar, flour, white rice. Bought a fit bit to keep track of my steps, and started walking on a treadmill, gradually increasing speed and incline. After retirement it was easier to eat right and exercise, and I focused on getting my 10,000 steps in. I now walk at a 7.5 incline at 3.0 miles per hour, do 30 min to 60 min on treadmill daily depending on how active I am, always try to get that 10,000 steps in. 3 months ago I started doing yoga on line, and presently am on a 30 day challenge with Adriene (who is my favorite so far) I've lost 30 lbs and now weigh 135. I'm 5'6". I have a horse and ride a lot, I have been told this is not a good idea due to Eliquis, but I've told my PCP and cardiologist that I understand the concern but I accept those risks as I'm no longer competing, I'm not doing high risk activities with the horses and my horse is very solid and well trained. Getting outside and riding has helped my sanity and I live in a rural area. I've been cooking and trying out healthier recipes and really watching that salt intake. I weight daily and have prn Lasix for 3 lb wt gain, but have not had to use it. I think that the daily weight and recording that weight has helped keep me on track more than anything as it keeps me accountable before things start to spiral. I also feel better than I did a year ago.

Hello @d1956 and @doug57 -- Welcome to the HCM group here on Mayo Clinic Connect. I would like to introduce you to some other members who have also been diagnosed with HCM, like @karukgirl @ronaldpetrovich @PatMattos @lisa7 @yurkosolhan @bbonchek @lailaamin @mosiac @rrowner2 @mbcube @debcrawford

@d1956 Retirement keeps one busy doesn't it? I'm glad that you took the time to introduce yourself. Can you tell us more about the lifestyle changes you made?
@doug57 Welcome also to MN and Mayo Clinic. How do you like living in the midwest? Do you have any questions about HCM Clinic at Mayo?