HCM-ers: Introduce yourself or just say hi

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

Hello @gis, I found this from the Mayo regarding Hypertrophic Cardiomyopathy that you may find interesting:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Do you have HCM or HOCM?

Thanks for the invite. I am looking for to get more information on HCM.

I had exactly the same side effects sadly so had to stop the drug. I felt amazing for around a week but then the symptoms began. Left off for a week and started again but side effects reoccurred so stopped. I now feel awful so thinking of surgery. Are you having septal ablation or a myectomy? Keep well.

Ironically I’ve been home the last few days with some chest pains and was instructed to rest, so I’ve been able to get some responses out in a timely manner.
I’m always glad to share my experiences.
One of the huge benefits of getting an ICD is that a lot of them can come with a monitor that goes in your home and will read/transmit data from your ICD to your electrophysiologist via cell signal (at least in my case that’s what I use). This saves trips to the doctor, can get you high quality readings very quickly, and it can all be stored for an impressive amount of time.
As far as sources for information, I would recommend contacting the device clinic of the hospital doing the implantation. They are usually a wealth of knowledge and resources.
I have been lucky enough to have an older gal that is like my grandmother who is very sharp and experienced help me out.
I have a Boston Scientific ICD and have spoken directly with them on several occasions and they were outstanding as well. They understand the importance and get things resolved quickly. I have had zero issues with the device, as it has worked flawlessly after some setup adjustments.
The designs are far less obtrusive and the battery life on mine was 11.5 years when new, so the maintenance is minimal.
They are literally a lifesaver and I can’t say enough good things about them, but they also pack a tremendous punch when needed. Your lifestyle will change to accommodate this to some extent, but it is worth it. Certainly beats the alternative.
Personally, I’m glad I got mine. It’s literally been a lifesaver.