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Brother's condition worsens and have questions

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  • Brother's condition worsens and have questions

    It's been a while since I wrote. Update on me...myectomy a year ago May 1 at Mayo clinic continues to go well. However my brother was admitted into the hospital last week and was told that his heart muscles are weakening and he is going into the "dilated" stage of HCM. Because his septum thickness isn't as thick as mine and in a different area, a myectomy isn't an option for him. I'm trying to talk him into seeing my doctor at Mayo, but that's another story. My question is...since I had a myectomy, will I follow the same path as him? Can my heart muscles weaken also or since I had the myectomy will this prevent my muscles from weakening? PS: I am 32 and my brother is 45.
    They have switched his medicines, lowering his blood pressure. Is there anything else that may help him?
    Ok, another problem. My son age 4 also has HCM. I had a nephew who passed away suddenly at school age 10. My son's condition worsened from last year to this year. Not sure what his thicness is, don't have the results in front of me. I was told it was a "normal" change for his growth. They put him on a halter monitor which showed no problems. If there are any changes this year. they are placing a defibrillator in him next year. We carry a portable one with us now. While at the Mayo for myself, they had asked if I was going to bring my son to them. I told them I would wait until things started changing. Does the Mayo Clinic in Minnesota deal with children much with HCM? Is there a better place to take a child? I trust my doctor here in St. Louis and have talked to Lisa about Dr. Rhee. (You may recall meeting him at a seminar about a year ago) Please let me know your thoughts. THANKS for all you do. You have been VERY helpful in the past!!

  • #2
    Re: Brother's condition worsens and have questions

    Kay -
    You have asked a great many hard questions... I will TRY to answer them all -
    * will you follow your brothers disease process - Maybe - maybe not. It is hard to tell - but you should have echos every year to monitor your thickness.

    * Your brother will need to shift his meds - there are some new options that may help - one is Bi-V Pacing - it shows great promise in maintaining EF.

    * Yes he should see an HCM specialist - and Mayo is a great option for him.

    * Yes Mayo has a good Ped. Cardiology dept. Next time you go bring your son.

    Did I hit them all??

    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

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    • #3
      Re: Brother's condition worsens and have questions

      Thanks, Yes, you answered all my questions. I have printed out your reponse to bring to my brother tonight. Maybe two appoinements for my brother and son at the same time to the Mayo Clinic will convince him to go with me. Thanks again for your support.
      By the way, I do have yearly echos along with 3 month check ups for my defibrillator. ) Oh, How do you get the Emoticons in your messages?

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