HCM-ers: Introduce yourself or just say hi

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.

Hi all looking at reading some of your comments 😊 Thanks

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.

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?

I was placed on a pacemaker/defibrillator in 2014.

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.

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.

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?

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.

Hello there @mummsy, and welcome to Mayo Connect!
Wow...you have had a really tough time, haven't you? It sounds like you need to get over this terrible kidney infection and get stable again before anything else can happen.
Once you get over this, is your plan to return to the cardiologist who diagnosed you with HCM?
It is so important to listen to the doctors treating you, but it is just as important for you to learn as much as you can about your condition, and to listen to your own body. You know you better than anyone! You mention you were diagnosed with HCM just two months ago and were put on "fluid tablets", I'm going to go out on a limb and guess that those pills were a diuretic like Lasix/furosemide? Do you know why they put you on a diuretic? Were you having trouble with edema or swelling?
I hope you are feeling better very soon, and hope you come back and share with Connect. This is why we are here...to share and offer support in good times and bad times.