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hypertrohpic cardiomyopathy / heart transplant

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  • hypertrohpic cardiomyopathy / heart transplant

    [hypertrohpic cardiomyopathy / heart transplant]

    Author: Elizabeth (---.proxy.aol.com)

    Date: 04-13-02 13:17

    Hi my name is Elizabeth I have an 15 year old son who has Hypertrophic Cardiomyopathy. When my son was 8 year's old the Doctor told me he saw Michael's heart was just begginning to show some thicking so the Doctor told me to make Michael a follow up appointment in 6 month's . When I tock Michael back the Doctor that we had at the time told me his heart was thicker and that it was time to out him on medication this Doctor we had at the time would not explain anything to me so I really didn't know what we were up against . I met a lady that has a child with the same heart defect Michael has she refered me another Doctor that was in the same office that the one Michael was being seen by so I made an appointment with this other Doctor he told me that one day Michael would need a heart transplant but not right now .After being with the new Doctor for about a year after Michael had an Echo the Doctor wanted to speak with me by myself he then asked me if I ever thaught about a heart transplant I told him no he then told me it was time to think about it if I wanted Michael to get a heart transplant whow that was a big blow . So after a week I told the Doctor that yes I wanted him to get transplanted if that was the only way he can live.

    Sorry for making this so long if any one has any question's about transplant center's I can help we have been to 2 or if you have any question's.

    Elizabeth

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    [Re: hypertrohpic cardiomyopathy / heart transplant]

    Author: Anthony deSpirito (---.24.155.180.Dial1.Weehawken1.Level3.net)

    Date: 04-13-02 16:34

    High Elizabeth, My name is Anthony DeSpirito and I was diagnosed with HCM about one year ago but I'm sure I've had it all my life.I'm no expert but with the help of this web and all the great people on it I am learning very quickly about this disease. and when I read your story I needed to respond and ask you if your son has any major symtoms it seems a heart transplant is a major step.have you looked into all your opptions yet.I strongly suggest you call lisa at the hcma office and find a specialist in your area she is a great resource and allways willing to help.I wish you and your son all the best keep us posted.

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    [Re: hypertrohpic cardiomyopathy / heart transplant]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-13-02 17:31

    Dear Elizabeth,

    How does Michael feel? Not about a transplant, what is his activity level? Can he keep up with the other kids? What kind of symptoms does he have? You don't say, and I'm wondering about these doctors since they don't seem to be telling you anything useful, just negative.

    I can't encourage you strongly enough to call the HCMA office and get the name of an HCM specialist to take Michael too. 973-983-7429.

    Sarah

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    [Re: hypertrohpic cardiomyopathy / heart transplant]

    Author: Lisa (---.ipt.aol.com)

    Date: 04-13-02 20:22

    Elizabeth,

    Hello again...How are things going , last we spoke the transplant was on hold. What is the current status?

    Lisa

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    [Re: hypertrohpic cardiomyopathy / heart transplant]

    Author: Elizabeth (---.proxy.aol.com)

    Date: 04-14-02 14:24

    Hi this is Elizabeth as far as asking Lisa for information and refered out to an HCM Doctor Lisa has already refered us out and Michael was seen by the HCM Doctor last March at that time the HOCM Doctor had Michael do an treadmill echo to see if Michael developed some blockage .Michael did not get any blockage so they told me Michael would only last about 1 year without transplant.Well I am happy to say Michael went past the year mark last month.

    The reason they did the treadmill echo was if there was blockage they could of cut some of the blockage off and prolong transplant.After the treadmill test they told be I am sorry the only thing they could recommend was transplant.

    As far as Michael's ability Michael is unable to attend school his energy level is very poor some day's Michael has very good day's but right know his blood pressure keep's on going down and we have been dealing with this for about 2 week's .Michael's Doctor here in Sacramento say's that Michael is doing good but he does not know why his bloodpressure is still going down also the Doctor has cut Michael's medication down.As far as system's go Michael get's tires real easy on some day's and has chest pain they say it might be caused by scar tissue from his ACID pacemaker Michael get's dizzy from time to time.

    Sorry so long Liz

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    [Re: hypertrohpic cardiomyopathy / heart transplant]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-14-02 21:23

    Dear Liz

    Never apologize for a long post, please please please.

    I am so glad that Michael is hanging tough despite the odds. I wish you all the best and thank you so much for sharing.

    I'll keep you both in my thoughts.

    Sarah

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    [Re: hypertrohpic cardiomyopathy / heart transplant]

    Author: Elizabeth (---.proxy.aol.com)

    Date: 04-15-02 14:13

    Hi tomarrow I take Michael back to our local cardiologist then they are going to do an Echo on him to see if the water is gone or not I am kkind if nervous about this but I know GOD is on our side and alot of people are praying for him so that make's me feel if kinda of better but Iam still a little bit afraid.

    By the way we are doing a fundraiser to help pay for Michael's post transplant expense's and after care expense's if any one would like to see the new's paper or the t.v story they have done on Michael let me know and I can e-mail them to you .

    Liz

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    [Re: hypertrohpic cardiomyopathy / heart transplant]

    Author: Chuck Morrell (---.proxy.aol.com)

    Date: 04-22-02 12:02

    I received my Heart Transplant in 1995 due to HCM. If anyone has questions please let me know.....Chuck
    NOTE: This is a post from the previous forum message board.

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