I hit a wall with Hypertrophic Cardiomyothopthy nothing working

So unfortunate and i see you had your myectomy at a hospital in florida!
Since the mayo does not take ykur insurance is there any way yku can reach out to another COE hospital? To live out your life with that type of obstruction would be horrible, i know your experience with your myectomy was not a good one so i would encourage you to locate a COE!
Best of luck

The Mayo in Jacksonville, FL (nor Arizona) does not preform myectomies although other heart care is probably among the best possible. Florida is tricky with insurance; indeed, I understand that in the past, at least, Advantage Plans were not accepted. There have been other postings where participants elected to (bravely) get a second myectomy at a COE.

Yes i had mine done in Rochester MN by dr dearani and i understand he does alot of cleanups from other surgeons who did the procedure incorrectly!

Im really glad i decided to go to mayo for my diagnosis!
So many years being misdiagnosed and under diagnosed in my home town finally made the trip to phoenix and the day they saw me was the day he said myectomy was the best course of action for me!
Im 3 months out now:) and feeling good

Hi there, Nicholas Smedira, at Cleveland Clinic , Cleveland does their myectomies and comes down to the Fort Lauderdale Cleveland clinic at Weston once a month. I had gotten an opinion from him and he is excellent

Yes, indeed, the Cleveland Clinic is an extremely reputable place for HCM and probably just about every other heart issue. It's a Center of Excellence (COE). There are several dozen other COEs and here is a link: https://www.4hcm.org/center-of-excellence

Thank for the info

No it's not been easy and every day is a struggle I am waiting to get a different type of insurance .
I will be getting a second opinion.
I still have seven months to go.
I am glad you are feeling better best of luck and God bless.

@brumasterj I am so glad that your myectomy went well. I am hoping to have mine at the end of October and have been interested in the recovery process and duration...three months sounds hopeful to me. I am really curious about arm mobility, how much do we have in the first few weeks? And how long until full mobility? I am trying to plan ahead. Any advise would be appreciated!

@brumasterj
At what point do they recommend surgery? I have HOCM and have taken Camzyos for three months. My third echo shows a reduction of ef so they stopped medication for a month until another echo.
Will continue med at a reduced dose if I rebound. But what if I don’t?

@deniseinflight My septal myectomy was July 24, so just over 9 weeks ago.

I was told no lifting more than 8 or 10 pounds in either hand for 6 to 8 weeks. The first couple of weeks there was no temptation to test that limit, as the sternum was pretty sensitive.

Because I had a pacemaker installed 4 days after surgery (that's another story) I was also told not to raise my left arm above shoulder height for 6 or 8 weeks.

I gradually felt stronger overall (walking daily, more and more, with rests), and could move and use my arms fine, but followed those instructions.

This past week I started cardiac rehab, which includes some arm work as well as treadmill, bike, and other machines (rowing machine to be added soon, I think).

... and once I post this I'm heading out to mow the lawn.

Each of us is different. (I'm a 73 y.o. basically fit guy, pre-op.)

Advice? Here goes, for a start:

1. Be a patient patient;

2. Trust your health care providers (but verify to the extent you need in order to feel comfortable);

3. Browse and read posts here and ask more questions as they arise;

4. Check out the HCM Association if you haven't already done so (consider joining and taking advantage of their pre-op class and one-on-one consultation);

5. Listen to your body.

... and you'll be fine.

Best of luck!