Myectomy Needed

Hello @hopenr, what a terrible decision to have to make! I feel so bad that you have such a dilemma.
Those friends and family will be needed once you get home, for a short time anyway, so that is a blessing.
Can one of them go with you?
I would not let location and convenience be my decision maker in a case like this. You need the best of the best for a septal myectomy, and that is the Mayo Clinic in Rochester, MN. Period!
This is life changing, and where you have it can be life changing as well.
I would say you could count on being gone 7 to 10 days if you go to Mayo...barring no complications. Three of those days are pre-op testing. I was in for 5 days. Stayed over longer because I was scared. I had no reason to be afraid, I just wanted to be close in case something happened while I was still there.
I had a tough decision to make as well. My dad was on Hospice at the time, and I didn't want to be so far from him and wanted to stay as close as possible. But knowing the Mayo was the best of the best I went. He died three days after I got home. It was sad, but at least he waited. I also had my significant other with me, so it was much easier than being alone. I feel a companion is necessary for this surgery. You can't lift anything afterwards, so how would you get yourself and your suitcase to the airport.
So, again...do you think one of your family or friends could accompany you?

I have decided to get it done at the Mayo and am currently working on finding someone available to help me there. Thank you so so much for all of this good information. I am sorry for the loss of your dad.

Sorry for the late response!
Listen to everyone here and make the mayo your choice:)
I first started seeing mayo in phoenix in Dec!
I was told or diagnosed with HCM with severe LVOTO
I was told by dr Alsidawi that a lot of facilities say they can do septal myectomy but do not believe them! there are only a few surgeons in the world that can do this surgery effectively and 2 of those surgeons are in Rochester!
He put me on camzyos to get me feeling better while awaiting surgery!
My surgery is being planned for early summer!
The Camzyos has definitely made a difference for me but i still have provoked obstruction
After going into my 3rd month of camzyos.
Initial gradient was 122mmHg
After 3 weeks of camzyos it is and has maintained 38mmHg

Hope this helps

How do you feel? With the decreased gradient, do you still feel the need for the septal myectomy?

Thanks for asking!
I suffered two back to back heart failures in oct and nov
The first one our local hospital diagnosed me with pleurisy and pneumonia, the second one they said i had heart failure with LVOTO.
I then went to the mayo clinic and they said i had been mis diagnosed for years and had had several exercise induced heart failures.
Since being on camzyos yes im doing more mileage on my mountain bike than i have in years but im still dealing with a heart murmor when i hit harder hills or strenuous fast movements.
Thats because i still have the obstruction.
Im 56 and very active and feel that i want to eliminate the obstruction with surgery so i can get back to my life style!
This has stopped me from running and strenuous activities.
If i was 70 and slowing down i would probably consider staying on camzyos.
The other reason im not staying on camzyos is because the protocol to stay on it!
Monthly trips to phoenix which is 7.5 hours away 1 way.
So the trips to phoenix are time consuming and expensive.

I am 71 and not slowing down 🙂

Thats awesome!
I have plenty of friends in their 70’s that are very active and fit!
I tell everyone i want to be in my seventies and still whooping the young ones on the mountain bike trails!
I love hunting so this has slowed me down over the last few years.
When are you scheduled for surgery?
And have they suggested camzyos prior to surgery?
So many people have not have to have surgery since camzyos.

My local cardiologist is not a big fan of Camzyos. My symptoms come and go and have never been "bad" enough to interfere with my quality of life. Recently I have had more jaw and chest pressure (randomly) so the topic of surgery came up.

He may not be a fan of it because he is not in the program?
In order to be prescribed camzyos your cardiologist, pharmacist and your self all have to be enrolled in the REMS program:)
It sounds like the type of HCOM i have its exercise induced
I would have a bunch of good days then have a bad day
As time went on my good days got less and less and bad days became more and more.
It got to where i struggled every bike ride and or walk.
Camzyos is a game changer for me that is!
Im back to being active just not hard core:)
I personally would advise talking to your cardiologist about it again at least a good conversation about it.