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Transplant Recommended

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About the Author

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Equestriansrock I am 25, married, and planning for the future. My family has a strong history of HCM and I just received my genetic testing results. Diagnosed at about 13 and had an ICD implanted 11/2013. We are looking into all of our available options to ensure future generations do not have to suffer from this disease. Find out more about Equestriansrock
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  • Transplant Recommended

    I had a follow up scheduled with a new (to me) doctor at John's Hopkins the other day due to a lack in follow up with my usual doctor there. I saw Dr. Judge who is a member of the transplant team and very familiar with HCM. During our visit he went over my last years VO2 stress test results with me which I had not previously seen. Apparently they are quite alarming. My VO2 max was 11 with good effort. The Dr informed me that based on these results and my physical symptoms and limitations that I would be eligible to join the transplant list. What a shock for me! Even though I have always felt bad I just assumed that they would let me keep plugging along like this until I ended up worse. He said there are no other appropriate treatment options available to me that would improve my condition. It was suggested that I could wait to list however the healthier I am the better the process would go... now comes the big problem. I want to have a child of my own. I was informed that pregnancy after receiving a transplant is highly discouraged. So now we have to decide if we want to wait to list and try for a baby or just forget the idea and start the process of listing. I know there is always adoption, but I feel strongly about having my own especially since I know their are options available to prevent me from passing on the gene. I realize I need to place a call to Lisa on Monday I'm just feeling very overwhelmed and upset right now. There are a lot of things to consider and it's causing me to just break down. I want to be better but I am very scared about what could happen.

  • #2
    Re: Transplant Recommended

    Why is the 5 year survival rate for zone 2 (my zone) for my age group 18-35 only 66%? I expected it to be higher. This number is not very reassuring. What is it based on? Does it include all causes of death or just those directly related to the transplant? Not feeling very good about this.

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    • #3
      Re: Transplant Recommended

      There is a person on this forum - maztbo - who is also waiting for a transplant and in Zone 2 as well. He has done a lot of research on this and if you search for his postings you will be able to read to what he has found. He has not been on here very often lately but I am going to ask him to contact you through PM.

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      • #4
        Re: Transplant Recommended

        Okay, throw the 5 yr statistics out the window. I was 57 and am 9 years out. I do not know how long I have but I know it has been a whole lot longer than if I had not had a transplant. As far as pregnancy is concerned, pregnancy is hard on your heart if it is already weakened. I do know a couple of people who have had heart transplants and have had children. The one boys are now in college and out on their own. She was the first person in the US to have had children post transplant and that was 20+ years ago. The boys are fine and healthy I would certainly discusss with your transplant Dr and a gynecologist that would specialize in high risk pregnancies but you need to weigh the risks between pre and post. It may not be reccomended for you before a transplant. Keep us posted on how your Dr. visits go and your decisions.
        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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        • #5
          Re: Transplant Recommended

          My dad works with a lady that is 25 years post heart transplant. Yes, toss the 5 year statistic out the window.
          Luke 1:37 For with God nothing shall be impossible!
          ***
          2004 Diagnosed with HCM
          2010 Extended Septal Myectomy, Mayo Clinic with Dr. Dearani on 9/23/10
          2011 5 of 8 children tested and found negative
          2012 Hypothyroidism secondary to Thyroid ablation
          2013 A-Fib
          2013 Inconclusive genetic testing
          2013 April Fool's Day found me getting an ICD!!!
          2013 Second Myectomy with papillary muscle resection and tricuspid valve repair, Mayo Clinic with Dr. Dearani on 10/11/13

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          • #6
            Re: Transplant Recommended

            Thank you guys for the encouragement. I hate to sound negative or ungrateful, however even 25 years is not very appealing when your only 25. I am hoping to be able to live past my 50th birthday. I know that the way my heart is functioning now that there is no guarantee on how long it will last, but I'll take 50 bad years over 25 great ones. I have learned to live like this and manage to get along so far. I guess the problem is figuring out how long until I'm worse. Even though I am eligible to list now, maybe my heart has been this bad all along. Hopefully there will be a doctor who can help answer those questions. Does it stink to live like this? Of course, but I guess I want to live more than I want to be healthy.

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            • #7
              Re: Transplant Recommended

              One thing for you to think about: Medical treatment is advancing all the time. If today you can count on an average life expectency of 20 years after transplant, and you make it through the first ten, you can count on more than an additional ten years because in the mean time the treament got better. You shouldn't forget that current statistics are always behind because of the fact that they include people that had less optimal treament than is currently available.
              Some people say I don't have a heart, but my doctor says I have too much?

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