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THanks HCMA

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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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  • cynthiaG
    replied
    Re: THanks HCMA

    John,

    tried to get in touch....where do you stand at Baylor?? worried about you

    Leave a comment:


  • heather
    replied
    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!

    Leave a comment:


  • pkasin
    replied
    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

    Leave a comment:


  • pkasin
    replied
    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.

    Leave a comment:


  • joepgh
    replied
    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.

    Leave a comment:


  • pkasin
    replied
    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

    Leave a comment:


  • Midge Rollins
    replied
    Re: THanks HCMA

    Good luck I hope Baylor gets it done

    Leave a comment:


  • gfox42
    replied
    Re: THanks HCMA

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

    Gordon

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  • Frosty
    replied
    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

    Leave a comment:


  • JillC
    replied
    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

    Leave a comment:


  • mbcube
    replied
    Re: THanks HCMA

    Happy B-day & hope your prayers are answered soon in Texas.

    Leave a comment:


  • maztbo
    started a topic THanks HCMA

    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)

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