HCM-ers: Introduce yourself or just say hi

Welcome to Connect, Chris! Yes, I stumbled upon this support group, too, after I had surgery for HCM. Where are you being treated? Please look for a COE (Center of Excellence) for HCM. We are a bit partial to Mayo in this discussion group (you can chuckle), yet we have Connect participants who have gone to many different excellent COEs and share their experiences. I am glad that you are researching HCM, we encourage people to find out all they can. Understanding is vital to generating questions for your doctor. Here is a link for a general overview: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198. I also recommend the nonprofit Hypertrophic Cardiomyopathy Association website: 4hcm.org. I encourage you to complete an intake interview with them, they can guide you on this journey. There are several Zoom meetings where you can interact with a moderator and others to learn and discuss aspects of HCM. How were you diagnosed with HCM and what steps in treating this disease have you taken so far?

Hello, fellow HCM-ers. I have the triple "gift" of 3 different heart conditions, managed by my wonderful cardiology team at University Hospitals (Cleveland), a Center of Excellence for HCM. After 3 MI's and 1 CRAO (Central Retinal Artery Occlusion - stroke in eye), I'm still here at 80..., still able to work on projects from time to time, and surprised/grateful to be here to witness grandchildren's accomplishments, etc. My father (loving thoughts on this Father's Day), died at 62 from MI, and I not only look like him, but inherited his lousy cardiac genes. High lip (a) (genetic) in addition to other issues, but between Praluent (for CAD), Rosuvastatin (for CAD), Pacemaker (for bradycardia) and Camzyos (for HCM), I'm hoping to finish the two books I am working on. Fortunately, I have a successor appointed to finish more important of two books. For now, UH is keeping me going. Interested to hear your stories, and compare notes. I found Camzyos a miracle drug!

Hello @thnsspls, and welcome to Mayo Clinic Connect.
I'm glad you found us!
Have you had a chance to read the numerous posts here on Connect?
Here is a handy link to Mayo Clinic and information on HCM/HOCM:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
The Mayo Clinic is the world's leading experts in treatment of HCM. It's super important that your treating cardiologist is up-to-date on hypertrophic cardiomyopathy and the various treatments available to you.
It must have come as quite a surprise when you first learned you had this, how are you doing now processing all the information?
Are you healthy otherwise? Active?

Hi @susiewordsmith, thank you for sharing your words of wisdom and hope on your HCM + journey! As if that weren't enough, you were given extra heart stuff.
You sound like you have a great attitude considering the cards you were dealt. That helps tremendously when life doesn't go smoothy...you face each challenge and carry on.

How wonderful that Camzyos is working so well for you! It sounds like it has given you a second chance to complete some important life goals you have. And a back up plan to boot!

You must have a lot of energy or stamina to be working on not just one, but two books at the same time. That takes some good concentration!
Can you share what your books are about?

@walkinggirl
Hi Linda, Thank you for the warm welcome and the helpful resource links. In response to your questions, I was diagnosed following a recent hospitalization for Afib. I have since seen a cardiologist, who has referred me to a structural heart specialist who I’ll be seeing next month. Lots of uncertainty at this point, but I am still hopeful. It has helped to read about others’ experiences on this discussion board.

Hi @karukgirl, Thank you for the welcome message! As you said, this diagnosis has come as a great surprise, but at the same time, it helps to put a name to the distressing symptoms (back and chest pain, shortness of breath, palpitations) I’ve been feeling. Other than this issue, I am fairly healthy and active; I exercise 3-4 times/week (either cycling or hiking). I am under a cardiologist’s care, but will try to get an appointment at Northwestern Medicine’s COE for HCM, which is fortunately located only an hour away.

@colleenyoung
Hello Francesco from Los Angeles here 61 years old diagnosed with HCM and VT in 2005 had a ICD implanted that same here.

My name is James B I have dealt with hcm since the early nineties. To extend my life I eat healthy and exorsie properly. Which means I am aw of my situation.

@ballard246 Welcome to Connect! (You may find that your post will have your full name removed, on Connect, your privacy is important.) You have been dealing with HCM for a very long time and have helped yourself by exercising and eating healthy! People are interested in how you manage your disease, please do share with us how you were diagnosed, any treatments that have helped (or not helped), where your doctor is located etc. Here are two links that discuss the two good pieces of advice you have for all of us. https://mcpress.mayoclinic.org/healthy-heart/lifestyle-steps-when-managing-hypertrophic-cardiomyopathy/ and https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-exercising-with-hypertrophic-cardiomyopathy/ Many of us would find it helpful to learn which non-medical tips that have helped you to live your best life. We are all so different and need to find the particular ones that help us lead our best lives.

@fra1965 Welcome to Connect! Many of us, indeed, have had a pacemaker or ICD become a part of our lives, we are the bionic people. VT is ventricular tachycardia to those unfamiliar with that abbreviation. You have been diagnosed and had an ICD since 2005, that's 21 years ago! How many times have you had the battery replaced? Please do share how you have incorporated both HCM and the ICD into your life, this would be very helpful to others, especially to those facing the prospect of acquiring one. How were you diagnosed with HCM? How was it decided that you needed an ICD? I received my ICD about 4 months after a septal myectomy, I had dizziness and giddiness along with a couple of syncope. A Halter monitor worn for a month showed many arrythmias. Again, welcome to Connect!