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maztbo grew up in boston,but live on the cape now with my wife and three teenagers Find out more about maztbo
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  • THanks HCMA

    Haven't been posting for a while no sense In going over the same old same old, still on that slow downward slid and went through another right heart cath.in March. I've got in touch with the transplant program at Baylor university hospital in TX, ( they do the most volume of heart transplants in U.S.A.)but not only because of that but because I know that the head of their team is very sympathetic to us HCM sufferers. I'm getting very weak and my condition is not very good so now is the time to make the move.

    Thank you who remembered that today is my B-Day in sending me a PM and the organizational one too!

    Maztbo (John)
    had HCM since birth
    'enlarged heart' identified in 96'
    HOCM dx in 7/08
    Myectomy 8/09
    extended Myectomy 5/10
    'End stage' HCM dx 8/10
    CRT-D implanted 9/10
    evaluated for Transplant 11/10
    Listed for transplant 6/11

  • #2
    Re: THanks HCMA

    Happy B-day & hope your prayers are answered soon in Texas.
    Marc
    Diagnosed @ 48
    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
    AICD - Valentines Day '08, Spark Plug replaced 11/14
    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
    Quietly going insane . . .

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    • #3
      Re: THanks HCMA

      John,
      I am so glad that you are making the move.....Felt it was the right thing to do ever since I met you on the forum. I know you have a good friend in Texas that has been through transplant so that will be helpful. Sorry you have to leave home to get the care you need, but this way you will live to fight another day.
      God be with you every step of the way.
      Jill
      After years of symptoms:
      Officially Diagnosed HOCM 2006
      Myectomy 3/11/13 at non-COE
      Extended Myectomy 7/23/14
      At Mayo with Dr. Joseph Dearani

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      • #4
        Re: THanks HCMA

        Two things, John --

        Yeah, forgot it was your birthday so happy whatever is left of it.

        Not happy you going so far but at least I know you will be getting the care you need. Am sure Bob will take good care of you. When you are back on your feet will make sure Carmine's reopens for 1 night.

        My friend, and you are my friend, love you.

        Marian

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        • #5
          Re: THanks HCMA

          Happy birthday, John! Here's hoping that they'll do right be you at Baylor.

          Gordon
          Myectomy on Feb. 5, 2007.

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          • #6
            Re: THanks HCMA

            Good luck I hope Baylor gets it done
            Midge

            Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
            ICD&Pacemaker 1996
            Heart transplant March 19, 2004 @ Mayo Rochester
            Mom of Kaye.

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            • #7
              Re: THanks HCMA

              John,

              If and when you feel up to it after your transplant, I'd greatly appreciate it if you could tell me about it. I am being evaluated at Tufts now for the list, and would appreciate understanding what it is like for a transplant patient. I was actually supposed to meet with someone who had just undergone one a few months ago - and had been doing great - but he ended up in the hospital earlier in the week, and just got back out.

              If anyone cares to lie and tell me it's a piece of cake, and that there's nothing to worry about, I'd be grateful... I'll grab on to them until after it's over

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              • #8
                Re: THanks HCMA

                My uncle had heart transplant (not related to HCM) at age of 71. He is now 80 and doing great ever since the transplant. Walks everyday, summer vacations at the beach every summer with kids and grandkids in the Outer Banks, NC. Chatted up with him over the 4th Holiday and he says he has absolutely no symptoms. He was in hospital only a couple weeks for the transplant and now only goes for an annual checkup.

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                • #9
                  Re: THanks HCMA

                  I hope this is how I end up too. I know of some excellent successes, but the early days after a transplant are by all accounts very risky; if you make it... But I guess it is all perspective... 50 years ago it was more simple... No hope at all! I guess I am just nervous about it, but perhaps I just have to put it out of my mind. We are lucky to have this surgery possible.

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                  • #10
                    Re: THanks HCMA

                    I actually want to add one thing... I feel pretty lucky to have been told about the HCMA. Lisa and the rest of the HCMA are doing some incredible things. Perhaps an enlarged heart can do good things too when in the right person (thanks Lisa)! [emoji2].


                    Sent from my iPhone using Tapatalk

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                    • #11
                      Re: THanks HCMA

                      Hey john! Good choice in centers. Baylor is where I had my work up for a tx. Are you on the list? I'm working on getting the pressures in my lungs down right now and then they'll put me on the list. Hopefully it won't be too much longer. Who is the head of the team, Shelly Hall? What did your cath show? Best of luck!
                      Heather, 43, non-obstructive HCM, dx'd at age 14, AICD implanted 11-02, PVAI ablation done for a-fib and a-flutter 5-2010. 2nd PVAI done for a-flutter and a-tach 3-2014. 3rd PVAI for a-flutter June 2015, dr forgot to reset ICD settings and I went into vt and almost died, July 2015, July 2015-started tx work up, October 2015, put on list in Dallas and tx'd on November 14, 2015.

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                      • #12
                        Re: THanks HCMA

                        John,

                        tried to get in touch....where do you stand at Baylor?? worried about you
                        \"It is not length of life, but depth of life.\"

                        Ralph Waldo Emerson

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