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Labbey Heart transplant on September 15, 2008 Find out more about Labbey
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  • National Institutes of Health

    Hi. Has anyone else ever gone to NIH to be a part of their HCM study?

    I went there in the late 80's and had every test imaginable done I think. I had surgery in 1989. I kept going back for "clinic day" every year up until 2001 and then I stopped going. Wouldn't you know after that year I sarted feeling real crappy again. I had the icd/pacer put in 2002, back home here. Weird how fast things can change....

    I heard they are not doing anymore "active" studies. I called today and talked to a nurse in the department. She told me that there could be other "drug options" besides amiodarone. Of course she couldn't suggest anything over the phone. She did say since I had surgery there, that I was always welcome to come there and be evaluated by an HCM specialist.

    She suggested having my doctor fax the most recent info. on me so they would know what has been going on. I am not sure how to approach my long and dedicated cardiologist with the suggestion of going back there. He did send me there years ago when they were doing studies. He told me last year that I was getting everything I needed right here in Rochester, NY. It still doesn't make me feel better! Then I think, well maybe this is it and it is as good as its gonna get.... And maybe I cannot accept that this is my way of life now. I hate this. I can't do anything anymore. I am always tired and I just plain feel crappy. And when I think I feel good, I try to be "normal" and actually do something in the world, and then I end up in an Emergency Room or just back home to rest. I wonder what I am to do for the rest of my life. I am too young to give in!!! There has got to be more that can be done in this day and age!!!!! Being on disability and not working and being in my house all the time is wearing on my nerves.....

    I guess I don't get how they still have HCM specialist at the hospital if they are not doing studies? Is this a dumb question. I just want to make sure that if i go there again, it will not be a wasted trip. I keep getting encouraged from Pam to seek another set of eyes. Because of how bad I have been feeling and how my quality of life has gone down the tubes.

    I think I am worse off after the pacer/Icd. It never made me feel any better at all, except to keep me at piece of mind for when I have a V-tach, V-fib attack.

    Sorry for the vent but really felt I needed to have it today. Once a month I usually get this way and it is no fun either.....everything is so much worse.. I am just tired... And I feel lucky that i can express my real feelings to all of you instead of telling everyone I know that I am okay. Noone knows like you all do. I hate it when I get like this.

    Do you think I should go to NIH or what? I need to talk to my cardiologist anyway first......
    Thanks for listening.
    Lisa A.
    diagnosed at 19. Open heart surgery at 23. Myectomy unsuccessful, but replaced damaged mitral valve, pacemaker, Icd at 36, evaluated for heart transplant at 39.

  • #2
    Lisa, Have you had a chance to call the HCMA office and talk to Lisa? Please try to do that before you seek another opinion. You are correct to want your local cardiologist on board. The HCMA is well acquainted with a few cardiologists in Rochester, NY, and you may even find that Lisa knows your cardiologist.

    Before returning to the NIH, I also would want to know that it would not be a wasted trip. If they can't offer all treatment options, there's a chance you will feel you've wasted the trip, the time, and money. At the time that we were going to the NIH, they did not have all treatment options available to offer. I think you will have a better idea after you talk to Lisa. You can also do a search of the NIH web site to see what studies they have in progress. I think tho, that you want treatment, not just observation in a study situation? Best wishes, Please keep us posted, Linda

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    • #3
      Hi Lisa

      Welcome to HCMA. It is always nice to hear from someone new.

      I started going to NIH in 1973. That's where I had my first myectomy. I would go yearly for a "checkup". Then I was told many, many years ago that they were no longer getting funded for that program and never heard from them again. I can't think of the year I was given that information.

      I agree with Linda. Please call Lisa. She has so much knowledge and is very easy to talk to. Her number is listed at the bottom of the page.

      Please let us know of your decision,
      .
      Esther

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      • #4
        I would strongly suggest you seek an opinion from one of the HCM centers on our links page. There are NO "HCM specialist" at the NIH now and there has not been for some time now. They had one study going on that was highly questionable in the past year (the use of digoxin in HCM). Other than that they have nobody on staff with any significant expereince in HCM. If you want to get an opinion on your treatment please head to an HCM center. The closest to you would either be New England Medical Center or St. Lukes NYC.

        If insurance is an issue, call me there are options available to you.

        Best Wishes,
        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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        • #5
          Nih

          Thanks for the responses again! You guys are great. Lisa thank you for the information. I am going to call you on Tuesday, finally!!!!
          Lisa a.
          diagnosed at 19. Open heart surgery at 23. Myectomy unsuccessful, but replaced damaged mitral valve, pacemaker, Icd at 36, evaluated for heart transplant at 39.

          Comment


          • #6
            As someone who attended the NIH since I was 14 and I'm now 27 and in need of a transplant. Please do not go to the NIH or ask for their advice. Talk to Lisa as soon as possible. I don't want to indulge to much info here but I urge you to seek the specialists on the list here at the HCMA.

            Beverly

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