If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Transplants in Young Adults

Collapse

About the Author

Collapse

kateslobsterface Find out more about kateslobsterface
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Transplants in Young Adults

    I have posted here once before, but it has been a few years.

    I have had a long history with this disease, and have an extremely strong family history of HCM (5 out of 9 of my fathers generation. 4 severe cases, 2 transplants, and father died from sudden arrest--had the worst case but refused treatment). I have been symptomatic since 2004, and was extremely limited starting 2007. Had my first myectomy in the summer of 2010, not successful. Followed with alcohol ablation in Nov. 2010, which did nothing but make me completely blocked. Had second myectomy in March 2011 at Mayo. Relieved my gradient, but still extremely symptomatic.

    I have okay and bad days. I tend to get breathless and chest pain at rest (mainly at night), and movement is generally exhausting. I have said this repeatedly to my doctors at home (in Kentucky) but I generally feel like a broken record. I know that they are listening, but all options feel like they have been used. Transplant has been discussed several times, but with no real steps made. Just had a pulmonary stress test done, and was just told that while my results showed that I was clearly being very limited by my heart and the results weren't good for a 22 year old, but it wasn't as bad as what they see in the average transplant patient. I know that HCM tends to get overlooked in the transplant community as you generally don't see the same markers, but when does it finally make sense to list someone like myself?

    I love, and greatly respect my doctors here--but I am really starting to question if I am receiving the best care. My doctor here is planning to contact who I saw at Mayo, but I feel like defeated at this point. I have a hard time doing basically anything, and have had to put school on hold because of this disease. I am worried that the CHF is going to catch up, and I am going to end up in kidney failure before they consider doing anything--which is what happened to my aunt. The only thing new that we are going to try is cardiac rehab--which I failed out of last time. Already on 400 mg of metoprolol a day, as well as lasix and aldactone. At this point I just want to feel better, so I am just looking for suggestions to move forward.

    Thanks!

    Katie

  • #2
    Re: Transplants in Young Adults

    Call mayo yourself and get back in there. HCM does have different circumstances for transplant and Mayo knows that. Sounds like you need to at least be evaluated
    Midge

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

    Comment


    • #3
      Re: Transplants in Young Adults

      Hi Katie
      You certainly sound like you're a mirror of myself (2 myectomies in 9months)forget about the locals and go back to Mayo, Midge is right HCM looks nothing like the criteria for transplant in other cardiac desease and the locals don't appreciate it. Read some of my recent posts in my present fight to get appropriate listing with UNOS,it's frustrating! If you're in need the sooner the better to get evaluated and listed,don't waste any time HCM doesn't play by any set rules.

      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

      Comment


      • #4
        Re: Transplants in Young Adults

        John--I actually read your UNOS post, and totally felt your pain. My aunt basically went into severe kidney failure before she was finally made 1A after a year and a half of waiting. Plus she had really been sick for the previous four or five years before even being listed. She has had a lot of issues post-transplant because of it. But our stories are very similar, and it is a journey I wouldn't wish on my worst enemy. Having your chest cracked twice in nine months is far from fun. I still have issues with random sternal pain.

        The only issue with Mayo Clinic is that is so far away--like 14 hours. And I don't currently have a way to make that happen. Does anyone know if they do appointments via phone or skype? I am sure that I could get any tests that they would want run done here, and that my doctors would be happy to gather them. My HF/transplant doctor here is actually friends with my doctor at Mayo--which is how I ended up there in the first place.

        The really upsetting part of all this is that for a long time it seemed that insurance (in my case, the lack of) seemed to be the biggest hurdle. My hospital does artificial hearts, and at one point we even had a semi-serious discussion about giving me one. But I refused for obvious reasons, and the fact that Medicare--which I just started receiving--doesn't cover it.

        I am just really sick of this whole waiting game, and feeling like I am just doing circles in place!
        Last edited by kateslobsterface; 11-09-2012, 12:19 AM.

        Comment


        • #5
          Re: Transplants in Young Adults

          What are the signs of a needed transplant in HCM? I have an 11 year old with a very unusual presentation...and have been warned it might be in the future--but I really don't know how we'll now. She does great, is obstructed, but does great---just had an ICD implanted due to her 4.0 septum size and scarring...

          Who can tell me what to watch for?
          I worry about waiting too long but also want to wait until it is absolutely necessary (or hopefully not)
          Marsha

          Comment


          • #6
            Re: Transplants in Young Adults

            Your daughter won't be eligible for a transplant until her own heart can't go on any more. If she starts to decline, be sure to tell the doctors she's been told she might be a candidate for transplantation in the future and ask what to look for.
            Reenie

            ****************
            Husband has HCM.
            3 kids - ages 23, 21, & 19. All presently clear of HCM.

            Comment

            Today's Birthdays

            Collapse

            Working...
            X