1. < Hypertrophic Cardiomyopathy (HCM)

HYPERTROPHIC OBSTRUCTIVE CARDIOMYOPATHY

Posted by newhocmpatient1 @newhocmpatient1, Sep 13, 2011

I am a newly diagnosed patient. I'm at the second opinon phase of a recommendation for a myectomy. After that I have to clear insurance and then send everything to Mayo in Minnesota. Has anyone had this operation at Mayo and can you tell me your experience, including recovery after discharge? Thanks.

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fishing lady | @fishinglady | Dec 19, 2011
In reply to @fishinglady "Hi this is fishing lady , I had my sugrey at the end of april. they..." + (show)
@fishinglady

Hi this is fishing lady , I had my sugrey at the end of april. they were vert good with me and always there when i called for the nurse they were there with in 5min i like all the people there. when i came out of sugrey i went into icu overnight. don't be supprised that you have a tube down your mouth it helps you breath. They helped me get up out of bed and took a shower they are all very nice. you will like all the nurses. I had a realy good experience with them and they realy explained everything to me.

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I had sugrey on a friday and and left tuesday. my husband drove home.

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LJR | @ljr | Dec 19, 2011
In reply to @kyles "I was diagnosed by my local card in GA this past April. I tried a couple..." + (show)
@kyles

I was diagnosed by my local card in GA this past April. I tried a couple of Meds that made me feel much worse. We (my doctor, wife and I) desided Mayo was the place to go for the surgery. It was terrific. I arrived on Tuesday July 19th, had testing and met with doctors Wed and Thur. I had my surgery Fri morning (open heart Septal Myectomy). Was released from the hospital Monday the 25th and flew home the next day.My chest hurt for a couple of weeks but I was only taking Tylonyl for pain from the Sunday after surgergy on. I hope this helps. I will check back and see if you have anymore questions.

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You can also check out 4hcma.org it's all about HCM. With a forum where several folks have had this same operation. It's a great site for folks living and coping with HCM. Good luck with your surgery!

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KyleS | @kyles | Mar 15, 2012
In reply to @kyles "I was diagnosed by my local card in GA this past April. I tried a couple..." + (show)
@kyles

I was diagnosed by my local card in GA this past April. I tried a couple of Meds that made me feel much worse. We (my doctor, wife and I) desided Mayo was the place to go for the surgery. It was terrific. I arrived on Tuesday July 19th, had testing and met with doctors Wed and Thur. I had my surgery Fri morning (open heart Septal Myectomy). Was released from the hospital Monday the 25th and flew home the next day.My chest hurt for a couple of weeks but I was only taking Tylonyl for pain from the Sunday after surgergy on. I hope this helps. I will check back and see if you have anymore questions.

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I was just wondering how everything went?

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newhocmpatient1 | @newhocmpatient1 | Mar 16, 2012
In reply to @kyles "I was diagnosed by my local card in GA this past April. I tried a couple..." + (show)
@kyles

I was diagnosed by my local card in GA this past April. I tried a couple of Meds that made me feel much worse. We (my doctor, wife and I) desided Mayo was the place to go for the surgery. It was terrific. I arrived on Tuesday July 19th, had testing and met with doctors Wed and Thur. I had my surgery Fri morning (open heart Septal Myectomy). Was released from the hospital Monday the 25th and flew home the next day.My chest hurt for a couple of weeks but I was only taking Tylonyl for pain from the Sunday after surgergy on. I hope this helps. I will check back and see if you have anymore questions.

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Had the surgery on December 28th in Rochester Mayo Clinic. Mayo was great. I am fully recovered an on no (as in zero) heart meds. I still do cardiac rehab and am having a ball with my new life. Things couldn't be better. I am so impressed that you took time to ask. It meant a lot to me. Best wishes.

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newhocmpatient1 | @newhocmpatient1 | Mar 16, 2012
In reply to @kyles "I was diagnosed by my local card in GA this past April. I tried a couple..." + (show)
@kyles

I was diagnosed by my local card in GA this past April. I tried a couple of Meds that made me feel much worse. We (my doctor, wife and I) desided Mayo was the place to go for the surgery. It was terrific. I arrived on Tuesday July 19th, had testing and met with doctors Wed and Thur. I had my surgery Fri morning (open heart Septal Myectomy). Was released from the hospital Monday the 25th and flew home the next day.My chest hurt for a couple of weeks but I was only taking Tylonyl for pain from the Sunday after surgergy on. I hope this helps. I will check back and see if you have anymore questions.

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Also loved Spring Hill Suites and especially during pre surgery, the Canadian Honkers. What great recommendations.

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KyleS | @kyles | Mar 16, 2012
In reply to @kyles "I was diagnosed by my local card in GA this past April. I tried a couple..." + (show)
@kyles

I was diagnosed by my local card in GA this past April. I tried a couple of Meds that made me feel much worse. We (my doctor, wife and I) desided Mayo was the place to go for the surgery. It was terrific. I arrived on Tuesday July 19th, had testing and met with doctors Wed and Thur. I had my surgery Fri morning (open heart Septal Myectomy). Was released from the hospital Monday the 25th and flew home the next day.My chest hurt for a couple of weeks but I was only taking Tylonyl for pain from the Sunday after surgergy on. I hope this helps. I will check back and see if you have anymore questions.

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I am so glad to hear that everything went so well. Mayo is a pretty amazing place. I could go for some of the fried cheese things from the Canadian Honker. Not so heart friendly. Take care.

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fishing lady | @fishinglady | Aug 5, 2012

Hope your sugrey went well for you and you got home alright. It is different I feel much better now. Its been over a year now.

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1 reply
newhocmpatient1 | @newhocmpatient1 | Aug 5, 2012
In reply to @fishinglady "Hope your sugrey went well for you and you got home alright. It is different I..." + (show)
@fishinglady

Hope your sugrey went well for you and you got home alright. It is different I feel much better now. Its been over a year now.

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My surgery went really well. The hardest part of the recovery was flying home. In the Rochester airport, the TSA knew I had open heart surgery, because Mayo wrote them a letter saying it was okay for me to fly AND I flew in jammies and slippers. They made me lift my hands over my head in the circular air thingy and that hurt. Other than a slow but steady recovery, I felt great within a month post surgery and today I feel like I used to feel as a teenager. Full of energy, never dizzy, weak or feeling faint. The surgery was a huge success for me.

For anyone thinking about it, one problem I had at Mayo was I lost my taste for food. They said that is not uncommon. I ate, but I couldn't taste anything. At home I started to lose weight too fast in the first couple of weeks. So, I called them. They were terrific and recommended Ensure and that's what I did. Then we knew I had the nutrition to help me heal. Within weeks, I started tasting things slowly and suddenly, that whole thing was gone, and I was back to eating. I keep Ensure (I think there is a Boost too) in the frig in case I need something extra (which never really happens). This surgery gave me back my life.

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fishing lady | @fishinglady | Aug 11, 2012

It feels like you a have a new lease on life. I am going on over a year now and feel geat. its like you said you have alot more energy to do things.

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fishing lady | @fishinglady | Dec 31, 2012

Well i am glad you went. makes a big difference now. I know it does me. been almost 2 years now,

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