HCM-ers: Introduce yourself or just say hi

@mbi I am so glad to read your great report! I am impressed that you were discharged so quickly! Yes, I think those who are more fit recover quicker - core and sit-ups help as you pointed out, I discovered that going to the gym and walking paid off. I remember the fatigue you describe which may be more from the anesthesia, on day four I noted (I kept a small journal) that it was the first day the desire to nap disappeared. I was discharged on day 5, at home a week after surgery. Like you, I was no spring chicken at almost 76, but here we see age is just a number. Wishing you a continuing great recovery and I hope walking becomes a permanent activity for you.

@walkinggirl
Thank you! I’ve always been a walker, but I stepped it up before the surgery. Hope to have more energy from now on.

@mbi, thank you for sharing your open heart surgery story! Dr Dearani is amazing, isn't he?
How wonderful you sailed through the hospitalization so quickly and are home in the recuperating phase. The care team at Mayo Clinic is like no other. The food? Not so much 🙂

Making the decision to have open heart surgery is not an easy thing to do. It strikes fear in HOCM hearts of us all, and many are so fearful they just can't imagine going through it.
I liked your statement that you felt "Like a bomb dropped on you" Great analogy! It is shocking to learn open heart surgery is in your future. But you did a good thing by walking and taking care of yourself as best you could before surgery.

Is is tough? Oh yes! But you are tougher!
It has not been that long, so do try and listen to your body. If you are tired, take a nap. You just had open heart surgery!
If you walked today, try to go a little further tomorrow. Walking is the best thing you can do to get back to your best self. Take care of your sternum too, and remember the weight/lifting restrictions.

Thank you for coming back and sharing your experience with others. By doing so you may have helped someone else make the same choice you did, and to not be so afraid.

Was Mayo Clinic Connect able to help you before your surgery? Did you read any posts that may have put your mind at ease a little more?

@karukgirl
Yes, Mayo Connect helped a lot.
I read that I would be getting shots in my stomach every day, to prevent blood clots. And that they would be getting me up and moving as soon as possible.
I don’t remember reading about the EXTREME fatigue, but I could have missed that.
Also, people commented that they walked a lot prior to surgery.
They was a big motivation for me!
But I mainly wanted anyone facing this surgery to know that the pain isn’t bad at all. And if I could do it and change my future, they can too. And how important it is to use a surgeon who is very experienced in septal myectomy surgery. ❤️

Thank you for this thread (and all of the information on the HCM site). This is my first time posting to the site, though I have been an avid reader since diagnosed with HCM about 2 years ago. I am scheduled for septal myectomy surgery with Dr. Dearani later this month. I am 65 years old and ready to feel better so I can be more active again.

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.

@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.

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

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.

@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.