Has anyone had OHCM symptoms return only 9 months post septal myectomy

Please ask your Cardiologist right away (second opinion other Cardiologist than the one who did the septal myetomy. You cannot waist your time on this. I am on camzyos only 3 weeks for 5 mg per day and I have no longer chest tightness. I hope you will do better soon.

Well hello there @dbrima, and welcome back to Connect! 🙂
I'm happy to hear from you, but not so much about your symptoms feeling like they are coming back.
Can I share with you my experience? I thought the exact same thing! But it was closer to a year out. I was able to work with Dr. Ommen at Mayo via the patient portal and he assured me, it would be super rare, darn near impossible, for my HOCM to come back, and certainly not this quick. He made some adjustments to my meds and eventually, I was off all beta/calcium channel blockers. I felt great! I also remember the surgeon, Dr. Dearani telling me the heart takes a long time to heal. Six month to a year.
I hope it helps to hear this?
I do remember reading on here about another Connect member who had a septal myectomy performed at another facility that was not a Center of Excellence. She ended up having to go through it again. I can't even imagine! Well, kind of I can and I know I would not want to have another open heart surgery...but if I had to I would. The fear is the worst part about having open heart surgery.
If you have any doubts, the best thing to do is see your cardiologist. I think yearly echoes are recommended for the first three years after septal myectomy. Have you had a post-op echo yet?

Thanks. Although rare, it seems I always fall in that percent. My bnp has gone up- it has doubled since the day after surgery- nine months later and so I am doing an echo and tests next week to see what’s going on. I have that same hcm feeling. I was on camzyos for a year and it didn’t work. My gradient before surgery was 100. I am waiting to see from next week’s echo what the gradient is and next steps.

It is good that you are getting an echo next week. You have been through a living nightmare! But you are here, you survived open heart surgery, covid, Camzyos, HOCM...now you have this. You will get through this too because you are stronger than you know and you are here for a reason. I will be thinking of you next week, what day is your echo?

Yes I always have the bad luck too… everyone doing great on Camyzos and I wasn’t even a bad case in the beginning: It really upset my heart and just coming out if A Fibrillation which I have read it can cause. Good luck and keep strong and keep us posted. I am seeing a surgeon in several weeks re my myectomy. I want to get on with my life as I know you do too.

My echo isn’t until May 2. I do not understand why I need to panic for 2 weeks and wait 2 weeks, but perhaps my Dr. doesn’t think a 2 week wait is unreasonable.

My family is angry at me and always making nutrition suggestions, exercise suggestions, doctor recommendations. I know they care, but I want to just escape from this “out of control life” I am living and then make decisions in 2 weeks after my wonderful doctor tells me my next steps.

I am starting to have panic attacks, which the cardiologist witnessed and so he knows I am desperate for answers. I think I am having them because after I had septic shock a year and a half ago, I can’t get calm. I had the flu a few weeks ago, was hospitalized for 3 days and carried on like a baby- from fear and pain. But I just want my own time to take control of decisions, which is all I seem to have control of these days. My mother is looking after my son most of the time, I have missed out on 2 years of his life (6) and I was once a great mother. I can’t manage to care about anything. I am locked inside myself!
I was once a very active girl, in the fashion world, selling to stars in high end stores in LA and I could care less about fashion, no care about what’s going on in anyone else’s life. I know it’s wrong, but I am so angry that I took all the right steps and find a new problem on the horizon. My friends are healthy and I can’t manage to walk across the baseball field to sit in the bleachers to watch my son play.
I got re-married a few months ago and I can’t manage to be the proper wife to someone who married me in this condition, a very kind, strong, supportive person. I know I am doing everything wrong, but don’t seem to care.
Did anyone else want their own pity party for awhile?

You know what @dbrima? It's okay to go to a pity party...but don't overstay your welcome! If you stay too long, I believe it makes it harder to leave and you end up feeling 'stuck'.
Find the door and leave, there is no future good that can come from being isolated in your own world filled with all you've lost.
Life is not always fun, fair or just, and bad things happen in everyone's life. It's what you do after the bad stuff that defines you.
What can you learn from your trials and turn the trial into an opportunity. To grow from. To learn from.
You are a strong person. You survived open heart surgery!! You have been given a second chance. Do you have something, anything, that you can do that you enjoy? Even if it's just sitting and listening to birds sing. Or feel the sun on your face. Walk in nature, as slow as you need. A hobby that gets your focus on something else, perhaps?
Re-direct your focus and point it to the now and the future rather than looking back at all you have been through. Because you already have been through it! It is the past and it's hard to walk forward if you are always looking back.
Have any of your doctors or those who love you mentioned therapy? Your loved ones love you, but they may not be equipped to help beyond just being there to support you. Perhaps having an outside person to talk to would help re-direct you and train you to use your powerful mind to cope. Learn to focus on the whole picture instead of looking in the mirror and only seeing you. I hope that didn't sound harsh...it's just I know from experiencing my own trials when I thought I may not make it, I noticed I said "I" , "Me", "My", a lot... instead of leaning into ways to cope and thinking I had to do it on my own. I kept using excuses for focusing on me, my troubles and what happened to poor me. God was my support. He provided a way through the fire. That is what helped me. You've come a long way. You have more to go. But using powerful thoughts to re-train and change your attitude to more positive may be healthy and help you deal with your situation. No matter what, you have to go through what you go through, but a positive attitude regarding it can make all the difference.
Feel free to reach out here on Connect. This is why we are here. To support one another, listen without judging, be a sounding board, and help pick up someone who is down, but don't be afraid to get help outside your circle either. It may help everyone around you. It can't hurt, right to try, right?

@dbrima Debra, @karukgirl gave you some excellent suggestions. I wanted to offer another way to think about this....

Make friends with your fear. Don't let your fear be an unknown that controls you. If you start writing down why you think it is happening, that may give you some clues to understand this. I am not a heart patient, but I went through 4 months of having panic attacks every morning when I thought about my spinal cord being compressed, and that there was no way out except spine surgery. I had a long rooted deep fear of doctors and pain. I started measuring my blood pressure and it would shoot up very high.

The day I asked myself WHY I was doing this to myself is the day it started to change, and I designed a pathway to navigate this unknown, help myself understand, and not allow stress to take a toll on my body.

Yes, you can overcome your fear if you understand it. I got started with a simple experiment to see if I could control my blood pressure by listening to music I loved while deep breathing in time to the music. I found I could control my blood pressure and drop it by 15 points! That itself is a victory, and I did this anytime I needed to calm myself. From there, I built upon this simple first step and I completely deprogrammed my fear. Sound impossible right now? I didn't believe I had the power to do this, and I surprised myself and grew into a much stronger person. I no longer fear surgery or pain. I did see a counselor to make sure I was on the right track, and by that time, I had already solved the problem.

Here's a discussion I started about overcoming fear that you may want to read. Everyone has a bit of a different experience with this, and it may give you some ideas.

Just Want to Talk- "How can I defeat my anxiety about medical tests and surgery?"
https://connect.mayoclinic.org/discussion/how-can-i-defeat-my-anxiety-about-medical-tests-and-surgery/
Jennifer