HCM-ers: Introduce yourself or just say hi

I'm sure glad to hear positive things about Dr Schaff. That is who is doing my surgery.

My husband was diagnosed with HCM 30 years ago and last October had septal myectomy by Dr Schaff and I think he now realises how compromised he was. He was convinced that the ablation would suit him better but after a long consultation with Dr Geske had the surgery instead. Stay in touch on this group it’s helpful and supportive

I'm confused. I just signed onto this today, but there is another group? "new (HCM) group on connect?"

Hi all. It has been 3 years since my diagnosis of hypertrophic obstructive cardiomyopathy, and the two heart procedures I received from the Mayo Clinic. The 1st procedure was septal reduction by alcohol (it did not work), then I was finally given the option to have the septal myectomy (which I researched and wanted in the first place) and that went very well, thanks to Dr. Hartzel Schaff. This is just a snippet of my story. I have been looking for a support group for quite sometime, that did not charge a hefty fee yearly. I am interested in listening to others experiences as I have felt alone in this journey from the start.

Thanks for the message back, still trying to get used to the way this is setup, sorry it took awhile to reply back, I hope what I say on here helps others to deal with there issues, it can be hard to deal with this condition, I watched my mother go through it, now I am going through it, I seem to have more symptoms that her though...

Well I guess my next step would be heart replacement, my obstruction is lower down so a myectomy is not on the books, my doctor does the NVO2 test on me to seen what my oxygen levee are and my last 1 came in at 24, 14 they do transplant is what they are telling me.

As HCM effected anyone digestion?

I do not have a pacemaker or defibrillator and am hoping this will prevent me from having to have one. Am also hoping I can get off the Disopyramide. That stuff is AWFUL. I've read there is a Rx to help with the dry mouth, nose, eyes but ....who wants to add yet another medicine when I'm anti Rx in the first place. I'm normally even anti doctors but when a 2nd cardiologist read all my reports and said he agreed I decided maybe mine knows what he's talking about ....haha. The second guy also said it looks like it's possible I'll be referred for a sepal myectomy and if I were his patient I'd ONLY be sent to Mayo. When I had a follow up with my doctor and he suggested the surgery and also said Mayo I did feel better. He even said there is a doctor in Boise who said he would do it but he didn't recommend it. Then told me the stats. WOW! I had no idea how few of these are done and totally understand now why places like Mayo and Cleveland are the places to go.

You sound like me! I was diagnosed with HOCM in 2012, and had a septal myectomy at Mayo Rochester, MN in November 2014. Mayo saved my life. I had been tried on many meds, and I have a pacemaker/defibrillator. I’m sure the Mayo will evaluate you extremely carefully, as they did me. This surgery alleviated many of my symptoms. They are very careful and thorough. I think it’s very Natural to be nervous and apprehensive. I had been evaluated at several major medical centers, The only thing they could offer me were medication adjustments.
I am very thankful I had the surgery. My symptoms had become very severe. I am a registered nurse, so I was very familiar with where my condition was taking me.
Do you have a pacemaker defibrillator? You may want to discuss that with your cardiologist.
I wish you the best of luck, and I’m sure you’ll be in a very fine care at the Mayo.

Hello, I'm scheduled for an alcohol septal ablation in june, 2019 (I"m in Milwaukee, WI) Just wondering what the recovery is like?