HCM-ers: Introduce yourself or just say hi

Hi,
I was just diagnosed with this disease. Was caught late.
Wondering if this group is "active". Im seeing posts from year 2016.
Im 63, and thought I was healthy. I noticed heart palpitations, feeling lightheaded, low blood pressure for a year or more. I thought I was just stressed out. In September this year, had echo cardiogram, ekg. Both showed this disease. Now where to go from here?

Anyhow, I could be talking to myself.. 🙂 so wondering if someone could direct me around here.
From Wisconsin

Hello @jojs ,
Welcome to the "Club". I'm like you...diagnosed at 62, came out of nowhere, but looking back now I see I missed some signs. It didn't help that in my rural Northern California medical community...I was misdiagnosed for several years. Ask anything you can think of and myself or someone else on here will be happy to answer. I had a septal myectomy at the Mayo in Rochester in July of 2020. There were so many questions I had too, and so much information I was able to find here. This is an active group, so maybe take a poke around on some of the many topics in this area. Colleen Young, the moderator is a wizard of all things on this site and she is always willing to help point you where you need to go. It's overwhelming at first...and there is a lot to take in. Take a deep breath, try to relax and learn as much as you can. I would be happy to share with you anything you ask. Just ask!!! Take care. You are in good company here.

Thank you for your reply and kind words. Yes many questions. I plan to navigate around here, and try to figure some things out. I made another appointment to see my cardiologists to find out if there is any treatments other than medication. Thanks again, your reply mean a lot right now.

I am happy to see some replies. I was trying to find a support group for my nephew that was diagnosed in junior high with the genetic Hypertrophic Cardiomyopathy with atrial fibrillation. My younger nephew that just completed high school is also now showing signs, and the two younger sisters are both carriers. Good luck to both of you, and hopefully my nephew will be responding soon as well!

See lower down in the Blog section for Congenital Heart Disease-there is a section on HCM that starts off with treatments. It may answer some of your questions before you see your cardiologist. You both are blessed to be diagnosed later in life…

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.

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'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 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.

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