HCM-ers: Introduce yourself or just say hi

I just joined this group and would like to say "hi" to all the members. No side effects so far but am quite anxious about the possibility. For those who have experienced them, when do they usually start?

Hi, I'm Julie and live in the UK. Here's my story. Exactly 20 years ago at the age of 42, I went to my GP with palpitations. I had had the odd one before but these were all day long for 3 days. The nurse did an ECG and she told me that it showed that I had had a heart attack and asked if I had had any chest pain. I said none at all and she said it must have been a silent one then. She called the Doctor in, he took one look at the results and said the nurse must have had the leads on incorrectly so re-run, she did and it was the same. I was immediately referred to a cardiologist and I was very lucky to be introduced to someone who understood the condition and had written several articles on the topic. That's how it all started. He put me on bisoprolol and I have tolerated it really well for 20 years with hardly any palpitations. Any I do get or normally dietary related, like too much potassium or a supplement that interferes with the bisoprolol. I have severe hypertrophy of the septum and left ventricular wall and am so lucky for it to be non obstructive. For 20 years, the results of all my echos etc. have remained consistent except for my left atrium dia which has grown from 3.2 to 3.8. (Previous consultations never recorded volume for some reason). I have very good blood pressure and normal diastolic function due to the beta blocker. I hold on to my cardiologist once saying that I had wonderful arteries because there never seems to be any positive news with this condition. I remember asking him at early stage diagnosis whether there were any positives with the condition, he thought very pensively and after a few seconds said no. Still makes me smile. I should also say that I got my Mum screened too and my Sister, Mum has a milder version and is still here at the wonderful age of 92 but she is very breathless if she walks she has never had any treatment for the condition. Sister is negative. So unfortunately my wonderful cardiologist left for Singapore, I got a new one and he doesn't give me any of the detail I used to get on my results. In fact one appointment I asked for an echo and all he did was a bedside one and he scared the life out of me by telling me my left atrium was much larger and just said I could take water tablets if it was a problem. So I took myself off to a very knowledgeable structural heart specialist who really understands these conditions. I met him last week and had a full calibration and some tests I have never had before. The echo was much more involved with the pushing stomach technique can't remember the name, plus new blood tests Troponin and BNP which were significantly elevated (38 and 950 respectively but unfortunately no historic data to know whether this had changed in 20 years). Overall he was very positive. give me more advice and tips. We talked about my left atrium which has a volume of 55 (why does everything have to be so abnormal). and of course the risk of Afib which really worries me. I await his full notes but overall I came away reassured. It's all about symptoms of course and here I have been really lucky to-date. There is something I wanted to check with others. I do often get some discomfort in the chest, usually top left or directly over the heart, I can't call it pain but I have always thought it was trapped gas as it goes when gas moves. Do others get this? I really wonder sometimes whether it is angina but it's never painful. I also feel every heart beat, always have, I know when I have an extra beat/missed beat so I am really worried about Afib. My OH has it, I have felt his pulse and I can believe he can't he can't feel it, I wouldn't be able to cope with it so don't think about it. I have no SoB, no restrictions but know this may change so just take it as it comes. Well that's me sorry such a long story but might help those just diagnosed, I remember I was terrified particularly after being told I had had a heart attack.

Hi @mamafacion, and welcome to Mayo Clinic Connect.
I'm glad you found the HCM support group.
I understand how frustrated and sad you must be feeling, especially about being evaluated for a heart transplant. That has to be a pretty scary thought!

I also understand that you feel trapped because of your weight, fear of bariatric surgery and not being able to use GLP1 medication.
I found this on the Mayo Clinic regarding GLP1 and thyroid cancer, take a look, you may find it interesting:
https://www.mayoclinic.org/medical-professionals/endocrinology/news/glp-1ra-and-thyroid-cancer-new-study-suggests-detection
It may feel hopeless, but have you considered this situation an opportunity?
Does that sound strange?
Turn this unfortunate situation into an opportunity.
An opportunity to do some deep soul searching, looking for the commitment to be the best you possible.
A wake-up call to come live your life the healthiest and best you can.

I know it is not easy to lose weight.
Food is such a powerful addiction for so many of us. It is unlike other additions, such as cigarettes, alcohol, or drugs...we DO NOT need them to live.
But we NEED food to live.
The problem is we use food as a reward for stress, for happy, for sad, for boredom, for self-loathing, self-medication. It hits all the pleasure centers in the brain and the 'high' you get from the object of your affection (pizza, chips, ice cream, etc) is temporary and goes away, leaving you craving more, and more again when the 'high' wears off.
Vicious cycle that keeps you feeling like a failure, giving up and giving in to food.

Have you thought about seeking out a dietitian or food counselor? Perhaps your physician can recommend a local dietitian in your area.

Have you thought about joining any online support groups?:
https://www.forbes.com/health/weight-loss/best-weight-loss-program/
https://diet.mayoclinic.org/us/
https://www.allencarr.com/easyway-stop-emotional-eating/
This may sound tough, but this is in your control...you have the power. The Allen Carr book is really good. It gets into the psychology behind the addiction and helps you understand why we eat like we do and how to break the cycle. For good.
Are you able to exercise or walk much? Walking any distance is a great mood lifter.
Walking is like free therapy.
Do you have a hobby you enjoy that brings you joy?

My name I jen and I live in cedar rapids Iowa. I was diagnosed with HOCM within the past 3 years. I take camzyos EF. However, my Max vo is only 11.6. They want to evaluate me for heart transplant but they've told me I'm too overweight. I can't take GLP ones because my mother had medullary thyroid cancer and I really am not comfortable with having bariatric surgery. So now I'm stuck and feeling really stressed and overwhelmed and sad

@walkinggirl
I’m sure going to try to keep walking. I have walked most of my adult life. When I was young, I walked to manage my weight, and now I walk to keep my energy up and stay as healthy as I can. At 3 and a half post surgery, I’m up to 5000 steps, although I need to break it up into 4 walks.
It’s all about slow, steady and consistent. I tend to get impatient though, lol.

@cjs11 Hey to a fellow Bostonian, Chris. I had my septal myectomy in July across the street from Brigham & Women's, at the Beth Israel Deaconess (but got a second opinion from the excellent B&W folks).

I'm 73, was told I had a heart murmur when in my 20s or so, but no HCM diagnosis until 6 or 8 years ago, based on echocardiogram and MRI results, but no symptoms that I felt until the summer of 2024 (mainly shortness of breath, but not too bad, and occasional lightheadedness, and I fainted once. My septum measured 2.1 I think it was, pre-op, now 1.1 post-surgery.

I had always been active (bicycling, swimming, hiking, gym, etc.) and kept up activity (at a slower pace) for the year I was symptomatic, right up to my surgery. So of course each case (patient) is different, but I'd expect your docs will encourage you to return to physical activity once your hip allows. I'm getting more and more active 3 months post-op, and feeling good.

Welcome! I have a left septal obstructive hypertrophy. Diagnosed after going to Urgent Care less than a year ago and a heart murmur was discovered. Started on metoprolol and when I adjusted the dose so I could tolerate side effects, the area which had diminished , reappeared more than before.
So referred to a COE in Iowa City . (Center of Excellence). Have been on Camzyos for 6 weeks and echos have shown improvement. Will see my cardiologist Tuesday after another echo and we will go from there. One thing I have discovered is that this issue presents differently for people.
As far as your exercise, my doctor told me to keep doing what I was used to doing. If there were symptoms( chest discomfort, shortness of breath, tiredness) to back off and take it easy.
Praying you can get your hip straightened out and bless you as you get your HCM treated and cared for.

Hi Group!
Newbie here. Still having a hard time digesting the recent echo results. Short story, 57 active long-distance runner past decade until hip issues past couple years. Pre-op for hip replacement found a 2/6 systolic murmur, sent me for an echo. Test revealed discrete upper (basal) septal hypertrophy 13 mm as well as ascending aorta 4.0 cm. Most likely due to borderline hypertension. I’ve not had symptoms, aside from perhaps pounding heart sensation at times, though I live not been as active the last 12 months while my hip was deteriorating. Scheduled to see PCP to initiate anti hypertensives and Brigham/Women’s cardiology, but not scheduled for 2 months out. Wondering if anyone have experience with septal bulge regressing with just good antihypertensive control? Also, for folks with HCM with or without symptoms, monitored over time, what experience with how stable or change by year, progression? Was hoping once hip was fixed, could get back into regular activity, after healing - not sure how ready to take on these more serious issues 🙁 Thank you for letting me join! Chris

@walkinggirl
I was worried about having a stroke. My brother and grandpa both had strokes and I told Dr. Dearani about it. Maybe that’s why I got the shots.
Now I take a baby aspirin daily.

Perhaps different surgeons have different protocols. Mine was Dr Schaff in 2022, I had no shots in my stomach to prevent blood clots or anything else. I did have to wear compression stockings for a time and that was annoying but OK. I did develop blood clots about 2 weeks after, was home, walking and moving often, do not know of those stomach shots would have made a difference. I did take Eliquis for about 5 months after they were diagnosed. My home cardiologist was "right on it," we have no COEs around here.