HCM-ers: Introduce yourself or just say hi

I was diagnosed with HCM almost 2 years ago. I’ve been told there is no medication or treatments for my version (without blockage). I’ve tried beta blockers, calcium channel, and Lasix and nothing helps my symptoms. I am not a candidate for mavectam either.
The symptoms are scary at times and I’m curious how others in my situation deal with the shortness of breath and chest pain that comes and goes. I’ve likely had some afib. It feels like I am in “no man’s land” because I don’t fit the criteria for much of anything.
I feel myself not only becoming more anxious, but depressed as well.

@krb48, I'm so glad you found Mayo Connect. Welcome!
I hope you have had time to poke around on here...there is a lot of information you can learn from other people who share HCM/HOCM.
You mention you were just diagnosed last month, does your cardiologist have a good working knowledge of HCM/HOCM?

Hi, I'm new here. I was just diagnoses last month.

Your symptoms totally sound familiar! I was a runner/walker too. I couldn't figure out what was happening. And neither could my cardiologist! I couldn't tolerate the meds either. Once I made it Mayo, I knew I was in the right place, at last.
I am glad to hear your have an amazing wife who will be by your side. That is a blessing for certain. I had to fly across this great Country to Rochester, and part of that trip involved a two and half hour drive to the airport. It was an unpleasant thought, but when it was time to go home, the trip was not as bad as I had conjured up in my mind.
I would share several of the same things about packing as for a woman...loose pants, easy to pull on shirts, slip on shoes. And don't forget your cell phone charger if you have one! The days before your surgery are jam packed with all kinds of tests and procedures, so be prepared to get in and out of your clothes several times in one day.
Thank goodness you had a cardiologist who recognized what you had and where to send you. I am ever so grateful you found Mayo Connect. I hope you keep coming back and keep updating us. I am giving you extra bonus points for sharing Mayo Connect with the cardiologist! Very cool.

Thank you for your prompt reply! I live just outside Greensboro NC and will be having surgery with Dr Schaff in Rochester. My wife has been an incredible support for 38 years and she will be with me. I have been blessed with many great people to help us through this trial
I used to be an avid runner. I have had progressive symptoms of dyspnea, dizziness, and occasional chest pain- especially post-prandial and with activity. I had a fairly extensive cardiac work up ( stress test, echo, cath ) 10 years ago and nothing found. I can relate to many others who had years of evaluation before being diagnosed. Last summer I actually self-auscultated a mitral murmur which led to a stress echo and my provoked LVO gradient was 133! I had the good fortune of seeing a cardiologist in Greensboro who was Mayo trained and she pointed me in right direction. I unfortunately had bad side effects with Metoprolol -and Diltiazem hasn’t blunted my symptoms.
I have found the entries on post- myectomy care to be very informative. I told one of the cardiologists at Mayo last week that the patient forums on HCM were extremely encouraging- to know that we are not alone, and to know that others have made it through a similar trial. Thanks again for your encouragement!

Welcome to Mayo Connect @bwburchette.
I am so glad you found this site and so happy to hear you have found comfort here on Connect too.
I think I understand how you may feel, because I felt the same way just before my septal myectomy at Mayo/Rochester. I felt like I was alone. I didn't know anybody with HOCM. I honestly had never heard of it before.
Having the support of others who have this, who have gone through all the meds and tests, misdiagnosed even, and such, to get to the point of needing surgery...it's such a relief. At least you are not alone! You have a support group here on Connect!
March 27 is right around the corner. You mention that you have been reading entries here on Connect, and I hope you found some wonderful, useful information that can help you.
If you have any questions, or feel like you would like to connect with someone who went through what you are about to go through, I would love to be able to reach out and help you with any questions you may have. I'm not an expert...I only had open heart surgery. But I learned from my own experience, and some wonderful advice I got here on Connect that was super helpful.
Do you know who your surgeon is?
Are you close to Mayo? I'm assuming it is Rochester.
Do you have a good support person?

I am new to Mayo Clinic Connect. Just diagnosed with HOCM last summer. Actually had first visit to Mayo last week. Very impressed and pleased with care I received. I am actually scheduled to return for septal myectomy March 27th. Naturally, I am a bit apprehensive, but I know I will be in good hands. I have been reading entries from HCM patients over past few months and have found it very comforting to know others are going through a similar problem. Thank you for providing a forum for patient support!

Browsing the internet I came across this support group a few weeks ago.
Check every day to stay informed.
Thank You

And I'm so glad you found this group too! It's wonderful to find folks going through the same things you are.
May I ask how you found Mayo Connect @par4rosy ?
How is your HOCM/Camzyos journey going?

Hi I find this group helpful- so glad to be part of it