HCM-ers: Introduce yourself or just say hi

Hi. My name is Kathy and I am new as well. I am in my 70’s and started fainting about twice a year since since 2005, usually when stressed. Doctors couldn’t figure out what was wrong with me although I was always low energy and had a heart murmur. My brother was diagnosed with HCM. In 2019 when we moved to FL a cardiologist finally diagnosed me with Hypertrophic Cardiomyopathy and they suggested a pacemaker/defibrillator which I got. I have not fainted since then but still get out of breath. When I go on a walk I need to stop about every city block as my beats per minute go up so I rest for several minutes and then continue. The doctors said this symptom would continue but I would like to find some medication that would help. Presently I just take metoprolol.

Hi, I'm Kimberly - diagnosed about ten years ago after my brother presented with symptoms and had genetic testing done through Massachusetts General. My other brother, my mother, and myself were later tested and are all positive for the gene. I've been on a variety of medications over the years but currently take Metoprolol, Verapamil, and Spironolactone for symptom management. My care team and I had been planning on having my myectomy later this spring, but we've changed course and I'm in the approvals process for Camzyos which I find very exciting! My primary symptoms are shortness of breath and occasional irregular heartbeats, but no fainting. I've had a murmur as long as I can remember, too. Despite all that, I still work full-time at age 59, take walks as often as possible, and enjoy getting out and about. I'm hoping that this new medication will help me regain my lost energy and ability to walk uphill without gasping for air! I've been reading the comments here and I am glad to have found others who are going through the same struggles as I.

Hi, My name is Kathy J.
I was diagnosed with Hypertrophic Cardiomyopathy 4 years ago at the age of 73. I had fainted once or twice a year for 15 years before the doctors figured out what I had. Up until that time I was very healthy, but was somewhat fatigued and gradually became out of breath while exerting myself or walking. My brother was diagnosed with HCM about 30 years ago. I received a pacemaker/defibrillator in 2019 and have not fainted since, although I still get out of breath after walking about a city block. I am on 25mg of metoprolol and am wondering if there is anything that can be done for my shortness of breath. I just discovered this Mayo Clinic connect site this week and am interested in reading comments from others.

Hi, my grandson was diagnosed with HCM at 15, he will be 17 in May. He had a S-ICD implanted as soon as he was diagnosed. I’m here to follow those with HCM and learn about symptoms, treatments and education.

Welcome @cay2023. I moved your post to this discussion:
- HCM-ers: Introduce yourself or just say hi: https://connect.mayoclinic.org/discussion/hcm-ers-introduce-yourself-or-just-say-hi/

I did this to help connect you with other members with HCM like @jojs @cyanidetransistor @karukgirl @valeriecowart @melindaruiz @joyce1109 @janetcf and many more.

Cay, you may also be interested in this related discussion:
- Pacemaker recipients: Looking for support from others https://connect.mayoclinic.org/discussion/pacemaker-recipients/

When will you have the pacemaker implanted?

Recent diagnosis HCM at age 84. Requiring pacemaker/defibrillator implant.

Hi Cyanidetransistor, Did you have your surgery yet? Either way, I hope you are doing well. Do you mind if I ask who your cardiologist is, and who is the surgeon? I am going to Mayo Rochester in March for all the testing. After testing I am seeing Dr. E. Mackram. Not sure what to expect or what they will suggest for treatment.

Hope you are up and about. Thanks for sharing.

Hi, I'm Cyanidetransistor. I was recently diagnosed with HCM by my home hospital. They referred me to Mayo. My Mayo cardiologist says that I am an extreme case and is scheduling a septal myectomy. It has been such a whirlwind tour. No sooner do I get used to my diagnosis, then I'm being scheduled for a scary surgery. I trust the Doctors at Mayo implicitly, its just scary for someone who has had nothing worse than a tooth being pulled. I am here to learn, be supported, support, and commiserate. Thanks for having a place for me.

Hi Valerie,
Welcome! I had a septal myectomy in 2020 and I was intubabated post op. I am not a medical expert, but have worked in hospitals for 42 years...I think most everyone after being on the bypass machine is intubated until they can breath on their own. Everyone is different, some with pre-existing conditions, so the time on the respirator is different for each person. They try to wean you off as soon as possible when it is safe. I was on for 4 hours after arriving in ICU. I remember it well! Feel free to ask questions...that's why we are here. It is a big surgery and anyone would be nervous about it. Having trust in your surgeon, the hospital and the nurses is very important, and the Mayo Clinic is the top in the world, the best of the best. Of course I am slightly biased 🙂

Hi, I am Valerie, 63, and thankful for this group. I may have a myectomy, and I am wondering if you are intubated after the surgery.