HCM-ers: Introduce yourself or just say hi

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?

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.

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, 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 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 Kathy-My doctor has recommended Camzyos the brand new drug for HCM. Has your doctor mentioned it? I am going to start taking it in a few weeks. It is really supposed to help our problem. Here's hoping... 🙂

Hi Kelli,
Thank you for the recommendation for Camzyos. I have an upcoming appointment with my cardiologist and I will as him about it. From what I have read it sounds encouraging.
Kathy

Hello,
I am Jayme.

Hi, my name is Hans and I'm 59. I was diagnosed with HCM a year and a half ago. Such an odd issue to suddenly have. I've always felt very healthy throughout my life and had lots of stamina until about 2 years ago. That's when I noticed I was getting dizzy if I carried something up a flight of stairs, this has steadily gotten worse to the point where I couldn't walk a full block any more without chest tightness. My doctor sent me to a cardiologist who put me on bisoprolol. I agreed to an alcohol septal ablation last year, but it was aborted when they couldn't isolate the flow to the specific muscle that needed to be shrunk. I was then referred to another HCM specialist for surgery.
They say timing is everything, and lucky for me Health Canada just recently approved the use of Camzyos and I was accepted into the trial. I started taking Camzyos 2 weeks ago and I've already noticed an improvement in my ability to walk further (I managed a full shopping trip through Costco without needing to stop to catch my breath). I had no idea I'd be so thrilled achieving something that I didn't use to think twice about.

Hello @hansj
Welcome to Connect. I read your post and thought how similar your symptoms were to mine. It just seemed to creep up suddenly, but when I thought about it, I realized I had been slowly getting worse over time. How excited you must be that you were approved to use Camzyos and you already feel so much better. Having HCM and knowing how it feels to have to 'catch your breath' and even easy walking causes chest tightness is not fun. And thank goodness you didn't go through with the alcohol ablation! You are correct saying timing is everything! I see you are from Canada. There are several folks here from Canada also starting this new drug. From reading their stories it sounds promising. You say you started the Camzyos two weeks ago after being accepted into the trial and are thrilled with what it's done for you. It's good you were accepted and you shared your experience here on Connect with others. It lets you know you are not alone and there are others going through your same journey. Will they use an echo to look for improvement in the pressure measurement? Has your cardiologist told you how long you will be in the trial?