HCM-ers: Introduce yourself or just say hi

Hello everyone. I was diagnosed with Non obstructive HCM December 2022. My reason for the visit was that I had palpitations that lasted a few days. Was put on 50mg of Metoprolol and everything was fine until this past March. Had a Trans esophageal echo done as part of a checkup to see how my HCM was progressing. No afib detected at that time. Had a follow up appointment with my cardiologist a few weeks later. She said everything looked the same but noticed I had afib. After wearing a heart monitor it was determined to be persistent. Was put on Eliquis and amiodarone immediately. Had a cardioversion not long after and just had an ablation 4 days ago. Happy to get off the amiodarone. My cardiologist never mentioned being at increased risk for afib after originally being diagnosed with HCM. If she would have, I think I’d been more proactive at preventing some of its triggers.

https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
https://www.mayoclinic.org/departments-centers/hypertrophic-cardiomyopathy-clinic/overview/ovc-20442502
Hello @jamestv, and welcome to Mayo Connect.
I posted a couple of interesting topics regarding hypertrophic cardiomyopathy for you to read. It helps to learn as much as you can about your newly diagnosed HCM. Many cardiologist are not familiar with HCM and this may be what happened in your case as well.
It sounds like you went on a rollercoaster ride you weren't expecting to take and have gone through a lot in a short time.
How are you feeling now? Have you been able become active again?

Thank you for your response. I’m feeling great now!! I’m 57 and decided to take much better care of myself. Lost 20lbs by eating much better and exercising almost everyday. Still have about 20 to go. Can’t say enough about the positive impact exercise has had. Taking control of what I can. The afib was really an eye opener for me as I was miserable when I had it. Heart jumping around in my chest caused a lot of anxiety. I was fortunate I didn’t have any symptoms with just the HCM. As a final note, I’ve learned to stay positive and not take what I read on the internet too seriously. Everyone’s case is different.

I was diagnosed when I was 39 yrs old, I am now 75 yrs old. I had to have AV node ablation because of my afib. Recently I am feeling tired easily.

I was placed on a pacemaker/defibrillator in 2014.

I've always had a sense for correctness which nevertheless can require a lot of digging to verify. Last week I resolved a nagging issue that first triggered in the 70s. Anyway, I have tentatively concluded that at my age, with my other issues, an ICD is not a high priority. Among other things, I found a relevant study that seemed to be based upon appropriate criteria. Being informed can be critical, but few doctors seem to appreciate having their omniscience questioned. In any event, I started Camzyos (5mg) two weeks ago. No noticeable side effects except significant reduction in chest pains and less shortness of breath. I can walk across the room without stopping. New question, however - I'm getting different answers from different sources. Does Medicare cover genetic testing for HOCM, either on its own or as part of the Camzyos protocol?

While at the Mayo Clinic for a septal myectomy 7/22, I was referred to the genetic counselors. (Out of 123 genes studied, none were mutated - new ones are found periodically - test again in about 5 years.) To answer your question, contact your insurance company and ask. My #1 NYS top rated Medicare advantage plan covered it in full. If you have descendants, it would be worth doing even if you need to pay out of pocket. My son and grandson had echocardiograms and will need them periodically unless the evasive gene can be found.

Hi all looking at reading some of your comments 😊 Thanks

Thanks for your response - The first thing I did was check with my doctor's team, then the lab they use, then (Original) Medicare. Different answers, none that I felt was definitive. Did some light research on my own and decided that learning medicare regulations in enough detail was more effort than the cost savings if I get denied. 4 siblings, 6 children, 4 grandchildren. Already ordered the test - just trying to clarify billing. Surprise effect from the Camzyos - I have had difficulty breathing on my back as far back as I can remember and much worse as my HOCM worsened. Oxygen helped but no doctor believed me because my blood oxygen wasn't low enough. When I was on my back during part of my ecoh yesterday I realized that I was breathing without effort. Pleasant surprise.

I am curious if you have tried to see a different cardiologist. ( get a second opinion) It seems to me you should have answers for shortness of breath and chest pain. I do not believe you should be living with that. Are you a patient at the MAYO clinic? I have been amazed on my own journey how simple medicines and adjustments of the dosage have helped me tremendously. You mention AFIB which is such a scary feeling. Has that been addressed for you at all? I sincerely hope you find a cardiologist who can help you so you can feel better.