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jillheart (@jillheart)

Myectomy with valve replacement

Hypertrophic Cardiomyopathy (HCM) | Last Active: Dec 1, 2016 | Replies (50)

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@colleenyoung

Hi @lina2017, welcome to Connect.
I moved your message to the Hypertrophic Cardiomyopathy (HCM) group on Connect. I encourage to read through the various discussions in the group where you'll meet many people who share your husband's experience.

- Hypertrophic Cardiomyopathy (HCM) group http://mayocl.in/2eJdqOc

I'd like to tag specifically @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @FrancineFafard @lisa7 @lucindag @23273333 @li @margie11 @fishinglady @lisa7 @lisab62 @debcrawford @onewholovesrock @1949 @mbcube who can tell you more about finding a good hospital, valve repair and/or symptoms post myectomy.

Lina, what part of the world do you live in?

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Replies to "Hi @lina2017, welcome to Connect. I moved your message to the Hypertrophic Cardiomyopathy (HCM) group on..."

When it comes time for me to have my Myectomy, I will be going to the Mayo Clinic in Rochester MN. My Cardiologist at the University of Iowa Hospital and Clinics highly recommends them. He has said that they do a higher number of Myectomys at Rochester. Thoughts and prayers for your husband.

I am a patient of the U of I and I am wondering who your cardiologist is ?

Hi! I live in rural Keota and doctor at the U of I. My dad has HOCM and so do I. My dad sees Dr.Lindower, he was the one who recommended having his kids tested. I was tested and I inherited it ftom him, I thought it best to stick with him because he knows my dads history. My HOCM has progressed way faster than my dads, thsts when Dr.Lindower suggested I see a genetic Cardiologist. Now I see Dr.Ahmad at the U. I absolutely love him, he takes so much time with ne and really explains things well, and a very caring man. This month when I go see him we are going to discuss again if he should send me to Mayo. He wants me to have Dr.Lommen and Dr, Schaff as one of my doctors. I think you would really like Dr.Ahmad.

I actually see Dr Coterlan for my HCM and then my 15 year old daughter was Dx in January and she see Dr Eric Edens. Both have been fabulous so far. I have four children total and just found out this week that 3 out of the 4 have the gene and one is symptomatic. We have an appointment at the end of the month and will ask to be set up with a genetic counselor as I would like to know more Have you seen a genetic counselor yet?

Dr.Ahmad is the Genetic Cardiologist, i have 3 kids and have gone through with the genetic testing. Mine came back as negative, but they are constantly adding new mutations....so this means it still could pop up as positive for my kids. I am so sorry your kids have it, its scary to think about what they have instore for them. But so glad they have caught it early and can get them on the proper meds to slow it down.

Do you have a ICD in place?

Not yet but feeling that time is getting much closer for me as the last increase in medications has not been working so well.

Dr.Ahmad and Dr.Mazur insisted I get one when I started fainting soells and also to be able to increase my meds. It hasent made me feel any better, buts its definitely a safety net if I go into sudden death.

Good to know. I am just to the point of constant dizziness and have not fainted yet so hopefully that is awhile for me. Best of luck and thank you answering me.

Hope I helped a little, its just nice to have someone to talk to from Iowa who has it! No one around here has really heard of it other than my dad and they don't understand how bad I feel all the time!