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Mayo MN 9/27 to 9/29 of 2016

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Bluewillowskys Find out more about Bluewillowskys
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  • Mayo MN 9/27 to 9/29 of 2016

    I was just scheduled to do my first testing day at Mayo in Riochester. Im feeling pretty overwhelmed. I went from just having a leaky valve in 2004 to being told last year I have HCM. Now Im being told as of last week I need surgery in near future. If any HCMers will be at Mayo when Im there and you have the time, especially if you have had surgery, I would like to chat.

    Lisa

  • #2
    My past issues have been blamed on asthma, anxiety, mitral valve prolapse, going back to when I was 27. I'm 50 now. So when a local (Iowa) doctor finally figured out the real issue a few months ago, that was a relief in a way. But, he wanted to do surgery and fix the valve as well, which scared the crap out of me. He started me on a different drug regiment though, which turned out to be beneficial so far.

    I visited the Mayo Clinic to see if the surgical need was agreed on, and if there were any other options. I was absolutely scared to death prior to going to Mayo. I'm extremely thankful I made that trip. The specialist I saw at Mayo explained in great detail my HCM and exactly where the thickness is (and isn't). They were very specific about that (showed diagrams). The echo they did was more detailed. They also quickly evaluated a previous echo and stress test results I provided to them that day, prior to doing the their echo.

    By the time I saw them (around a month 1/2 after initial diagnosis with HCM), the medication switch I made* was deemed effective by the Mayo specialist, and the recommended course was to stay on the medication route instead of surgery. He did explain what the surgery would entail, and much to my relief, he said trying to repair the valve would be completely unnecessary. If surgery was ever done in my case, they would address the specific thickness in the area that is causing the obstruction, but would leave the valve alone - the valve being an "innocent bystander" to the issue.

    You are in good hands no matter what the treatment path is. Even though he did not suggest I need surgery now, I felt better about that procedure as well. I would most defiantly have that procedure done at Mayo if ever need be. He also went into great detail on what I should look for, that would precipitate another evaluation or surgery, my case being managing the symptoms through medication.

    God speed and I hope you walked out of there feeling much better.

    *I had been on metoprolol and lisinopril. The lisinopril was deemed to actually make things worse in my case, so was put on a higher dose of Metoprolol and added Diltiazem.

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