Gauging Severity, Questions for My Next Cardiology Appointment?

#thehellyousay These reports are certainly difficult for us non-medical people to understand! We want to hear the results in plain English! We do not give medical advice on Connect. Your questions need to be answered by your cardiologist, when is your follow-up appointment? Have you read all you can about HCM? https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Are you receiving care at a COE (Center of Excellence)? My stress test was very normal for many years - until it was abnormal, everyone is different and my condition became worse over time. When you have your follow-up appointment, please also leave with a care plan.

@walkinggirl
Hi. What made you realize things were not normal? Yearly check or something you felt? Any information you have with symptoms would be great to hear about! Thank you.

@bbuck During the early 2000's, I was in my 50's, my family doctor (now we call them a primary care provider), noticed a mitral valve murmur which had not gone away on its own at the next visit. Referred to a cardiologist, fortunately, one who was well versed in HCM, in fact had trained at a place in MA that is now a COE. I had a list of tests and was diagnosed with HCM. Looking back, my dad most probably had it, maybe grandma did too. Over the years I had echocardiograms yearly, sometimes a stress test, too. Over time the thickness grew, I was Mrs. Denial, though! I was/am active (walk, gym, bike), started slowing down a bit around 2018. Doctor was getting concerned, wanted me to have surgery, Mrs. Denial was still here. (ME? Open heart surgery, you gotta be kidding!) Then in Feb 2022, I woke up during the night feeling ill, passed out on the way to the bathroom, first ambulance ride ever ... heart attack ruled out (your arteries are pretty clean), echo revealed thickening at a dire point. Cardiologist made it clear that "Your family will miss you" if I did not have the surgery. Whoa! This is really serious! The surgery took place in July 2022 at Mayo; I was 3 weeks away from my 76th birthday. Yes, went there from Upstate NY. From Feb to July, before the surgery, I had extreme shortness of breath which put a wrench in my style. I was prescribed a highly increased dose of Verapamil; side effect was something Metamucil and a high fiber diet and much water did not alleviate. I am so, so, glad I put on my badge of courage and saw this through, within 6 months I was doing everything again. Now, always keep in mind that EVERYONE IS DIFFERENT! Some have the shortness of breath from the get-go, some take meds such as Camzyos which may/may not help the condition - one can ask 100 people and hear 100 different stories because we are all unique. Please be sure to read https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198 and https://www.mayoclinic.org/departments-centers/hypertrophic-cardiomyopathy-clinic/overview/ovc-20442502 to start. I also recommend looking at 4HCM.org, an excellent nonprofit. The people at this organization help people by steering them to contacts to care/treat HCM. I am a Face of HCM (Linda standing on a boat). I hope this helps! How long have you known that you have HCM? Please tell us about your experiences with this inherited disease. I see that you have been a part of the discussions for quite a while!

@bbuck I had an afib-like episode, heart rate all over the place according to my chest monitor for doing exercising. I've always been a little short of breath, but that was diagnosed as asthma. Other than a "spell" here and there, I am completely asymptomatic. Although, things like being light headed or doctor's telling me I had a heart murmur, but it was "nothing to worry about" probably should have been a signal that maybe all was not really well after all.

One good thing that's come of it is that I have a fitness watch now and it's amazing what those things can tell you about your heart rate and sleep habits. It says I have sleep apnea, so things are just really going downhill in a hurry here, but I do get about 10,000 steps a day.

@walkinggirl
Hi. At age 60, was having a minor unrelated surgery, and they said I needed a physical and at that point found out I had HCM. I had always "felt" something was "off", but many tests showed all was well. Now I have check ups 1x a year . My symptoms vary...kind of a flop every so often, mucus in throat (not always), hills for exercise make me winded (could walk far, but not run). Dr. is treating blood pressure and so that is in normal range. Not much has changed with my baselines each year, so praying that continues.

This is kind of what I wanted to hear. The symptoms were always there, I guess. Even in junior high I remember hating the 440M run because I thought I was going to die from having to run so far. Once in a while, I feel something "catch" in my heartbeats. It lasts just a split second, maybe more, then it's back to "nornal". My paternal grandfather had open heart surgery in 1968 then died in 1980 of heart disease, so I knew my genetics were pre-disposed to heart issues, as well as cancer, of course.

The metaprolol has helped, I feel somehow like my heart/blood pressure has been "moderated" - fewer of the intense SoB episodes when going up hills, seems to be a more steady experience when walking. I get tired in the evening and sleep comes easy and early. It's the first prescription I've ever had that I will probably need to take every day of my life. It took about 2 weeks for it to give me that lulled feeling, prior to that of course my body was trying to reject it or compensate for it. Doctor asked me to take my blood pressures, which I don't do daily, but have sporadically. It's been around 135/85, sometimes lower, although I've always been at 120/80 on a normal day.

Anyway, thank you for giving me something to feel hopeful about. I'm normally a glass-half-full kind of guy, but this has really put me on my heels. I also want to know if there are life style changes? Like what about all these crazy supps I take (CoQ-10, Triple K (not Ketamine, lol), and Saw Palmetto? Plus a baby aspirin for reducing blood clots? Exercising? I continue to walk about 10,000 steps a day, but is cardio style exercise good or bad or at what level, etc. There was a time when I did 38 minutes of cardio (bike 31, rowing 7) and I always used a chest style heart monitor. Never really saw any erratic heart rates, seemed that my 100-120 HR numbers were within range, but maybe I was flirting with disaster? I also believe that if it ain't broken, don't fix it, so I won't be inclined to switch drugs unless there is a clear benefit.

@thehellyousay You seem to lead a very active lifestyle! Any questions about these supplements should be addressed to your doctor, we do not give medical advice on Connect. Yes, it does put you on your heels, yet you have always kept your family's heart history in front of your mind. I lost count of how many people were told they had asthma because of the shortness of breath rather than a heart issue. I drink about 64 oz of water a day (the HCM gave me stage 3 kidney disease because organs often do not get the blood/oxygen they need), flushing kidneys keeps things working. I also avoid sodium whenever possible; I read lots of labels and hardly ever use processed foods - or eat in restaurants when home. Questions about HR should be addressed to your doctor, too, they are different when resting as compared to active, as you know. I take 50mg of Metoprolol since my septal myectomy in 2022, it's supposed to "help keep your heart from working too hard," according to my doctor. I, too, often walk 10,000 steps/4 miles a day and work on balance, flexibility and strength at the gym. You are not flirting with disaster when under the care of and have the OK from your cardiologist. There are several Mayo Clinic links that discuss exercise and HCM. Please use your browser - insert: mayo clinic hcm exercise program to read and watch several clips, they may generate questions to ask your doctor.