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No longer a transplant candidate

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BlueDevil Find out more about BlueDevil
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  • No longer a transplant candidate

    At my quarterly follow-up last week, I got the unexpected news that I'm being taken off the transplant waiting list. The long and short of it is I seem to be too healthy for it at this time and there was no need to keep me on it as a Status 7. Of course, this could change in the future, but my condition thus far has remained pretty consistent since it has been tracked starting in 2004. (And it improved with aggressive treatment, the bi-v pacer/ICD, and getting off my butt to do things.) Ironically I am probably in the best physical shape I've ever been in my entire adult life.

    Nothing's really changed as far as treatment goes. I will continue to see the same doctor every three months except it will be as a cardiology patient and not a transplant patient.

    A small difference, but it's a wonderful mental boost.
    Life is a banquet...and I got botulism! -- Me

    If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

  • #2
    Re: No longer a transplant candidate

    Congrats! This must be a relief. It apprears you're doing something right. Keep it up!
    Marc
    Diagnosed @ 48
    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
    AICD - Valentines Day '08, Spark Plug replaced 11/14
    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
    Quietly going insane . . .

    Comment


    • #3
      Re: No longer a transplant candidate

      Great news, Tim. Congratulations!
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

      Comment


      • #4
        Re: No longer a transplant candidate

        Hi Blue Devil,

        I love the little sayings on your post... I'll have to tell my children... they'll laugh too.

        Pat

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        • #5
          Re: No longer a transplant candidate

          Congratulations!

          Gordon
          Myectomy on Feb. 5, 2007.

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          • #6
            Re: No longer a transplant candidate

            I'm happy for you. It just goes to show that not all people that have HCM will require a transplant. God works in mysterious ways.
            Keep up the good work.
            Esther

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            • #7
              Re: No longer a transplant candidate

              That is good news I am happy for you.
              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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              • #8
                Re: No longer a transplant candidate

                Great news, Tim, and good to hear from you!
                Theresa
                Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

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                • #9
                  Re: No longer a transplant candidate

                  Wonderful news - thanks for sharing! Linda

                  Comment


                  • #10
                    Re: No longer a transplant candidate

                    Keep up the good work! Great news and thanks for sharing!
                    Myectomy and mitral valve repair, April 2007, St. Luke's Hospital (NYC)

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                    • #11
                      Re: No longer a transplant candidate

                      Tim very good news! The Bi- V pacing and your success is hopeful data for many/ some who may emerge into end stage. What is the data that you have on this technology, do they anticipate that as long as you have Bi-V, your condition will remain stable ? And is there any time frame on Bi- V pacing? Any Progression of negative remodeling from the pacing or are all the remodeling processes anticipated as positive?

                      Just wondering from someone who hopes never to have to enter that arena.

                      Thanks for any info you can direct us to or offer.

                      Pam
                      Dx @ 47 with HOCM & HF:11/00
                      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                      Lead failure,replaced 12/06.
                      SF lead recall:07,extracted leads and new device 2012
                      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                      Genetic mutation 4/09, mother(d), brother, son, gene+
                      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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                      • #12
                        Re: No longer a transplant candidate

                        Thanks for the messages, everybody! In a way, things don't feel all that different. It's more of a psychological boost for me, but it's a nice one to have. Of course, I would love to have even more improved health, but if this is the level of health I'll have for the rest of my life, I'm at peace with that. Maybe it's not "right" of me to think as such, but I always looked at the transplant as an "either/or" proposition and not really as a "new chance at life." I don't think I will ever change my mind on that.

                        Pam -- Dr. Maron (Sr.) said I could be in end stage indefinitely. He talked briefly about one patient who has been in end stage for 20 years.

                        I have not seen him in well over a year, but the next time I do I will certainly ask him and/or my regular cardiologist more questions about the long-term prospects of the bi-v. I don't believe it's been the sole reason for my improvement, but it certainly has played a major part. I can say that I noticed an almost immediate difference in how I felt once I was able to get up and move around. (My implantation was a little more involved than the usual. The surgeon was unable to insert the defibrillator lead through the same blood vessel as the pacemaker leads, so it had to be done external to the heart. I was in the hospital for a few days because I had a chest plug.)
                        Life is a banquet...and I got botulism! -- Me

                        If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

                        Comment


                        • #13
                          Re: No longer a transplant candidate

                          Thanks for the info Tim.. so more reasonably .. the Bi-V was the catalyst to your progressive regaining of some quality of life and endurance / tolerance of increasing exercise. With that progression.. it is reasonable to equate added exercise and tolerance has made some very hefty contributions to your overall stability with endurance increases..All very good stuff especially for you.

                          You know at the conference I listened to the heart transplant person and he said that with a heart transplant you will be trading one set of issues for another. That was quite a profound statement to hear and I repeat it to individuals out of our knowing circle here when those individuals hastily say to me," why doesn't your doctor just give you a heart transplant?"

                          Maximizing the potential of ones own functioning heart with technology when possible is the best option for some individuals and I am happy this has worked out for you.

                          Pam
                          Dx @ 47 with HOCM & HF:11/00
                          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                          Lead failure,replaced 12/06.
                          SF lead recall:07,extracted leads and new device 2012
                          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                          Genetic mutation 4/09, mother(d), brother, son, gene+
                          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                          Comment


                          • #14
                            Re: No longer a transplant candidate

                            This is terrific news!
                            Reenie

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

                            Comment


                            • #15
                              Re: No longer a transplant candidate

                              That's great news Tim. Keep up the good work.



                              Donna - 17 yr old son dx'd with HCM in March 2008 - No family history.

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