septal myectomy and mitral valve repair

Posted by lina2017 @lina2017, Feb 2, 2017

My husband is diagnosed with hypertrophic cardiomyopathy in 2007 .He is on toprol all these years.but now having some syptoms like shortness of breath and moderate mitral insufficency .He needs to get a valve repair.we are fro texas and i coudnt find a good hospital for these two procedures .Any recommendation about the hospitals ?Is there any complication after the myectomy .

@cynaburst

@lina2017 so glad to hear that you are on the right path now. You will be so happy you traveled to Mayo.
Here are some myectomy resources that you might find helpful from a blog I write about HCM:

https://hcmbeat.com/resources/resources-for-patients-about-myectomy/

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Thank you so much Cynaburst..

Hi @lina2017,
I thought I’d check in to see how you and your husband are doing. April is just around the corner. Do you have any questions are you prepare to come to Mayo?

@colleenyoung

Hi @lina2017,
I thought I’d check in to see how you and your husband are doing. April is just around the corner. Do you have any questions are you prepare to come to Mayo?

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@ colleenyoung , Thanks so much for checking on us . We are doing good by the grace of God . We will be there on 17th and my husband has the check ups on that day . Hope we can meet up on 17th or 18th . Things are doing ok .. Will surely let you know !! 

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

@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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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.

@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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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?

@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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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.

@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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Do you have a ICD in place?

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

@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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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.

@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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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.

@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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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!

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