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Just Curious - Reasons for Heart Transplant

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Janet McClure Single mother to two amazing kids. James is 13 and has HCM. Emily is 11 and recovering from TBI. Find out more about Janet McClure
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  • Just Curious - Reasons for Heart Transplant

    This past week when I took my 12 year old son back to the doctor, his pediatric electrophysiologist told me she had several pediatric patients with this disease that are on the transplant list for a new heart.

    I know the figure probably is small, but about what percentage of people, children and adults, end up needing a transplant? Also, what part of the disease causes the heart to become so damaged that people need a transplant? Can the myectomy or ablation not be done early enough where the heart won't need a transplant?

    I was just curious. I didn't understand why children would already end up on a transplant from this disease.

    Thanks for the info! Janet
    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

  • #2
    Janet,

    The first reason that comes to my mind also applies to adults--the difference for a pediatric case being the early onset of severe symptoms. In HCM the walls of the left ventricle become thickened and stiff, creating difficulty in the portion of the heartbeat where blood is trying to flow into/fill the ventricle. In more severe cases the loss of suppleness in the left ventricle decreases the heart's ability to circulate oxygenated blood and a transplant may become appropriate. (At this point there also seem to be issues with regurgitation through the valves, which sure doesn't help the situation any.)

    The same sort of "diastolic dysfunction", where the heart has trouble filling because of a loss of suppleness, occurs in "burnt-out" phase HCM and in dilated cardiomyopathy--which is in the news recently because of the baby twins needing transplants.

    Myectomies/ablations only address the obstructive form of HCM where a thickened septum is partially blocking the "outflow tract" (=outlet to the aorta) of the left ventricle. A myectomy doesn't really address the loss of suppleness (although from what I've seen here there may be some indication that a myectomy may possibly delay onset of a loss of suppleness???)

    For what it's worth: There has been alot of progress in pediatric transplantation in the past few years. It has gotten to be quite successful.

    Once it became known at work that I need a transplant people seemed to "come out of the woodwork" with stories of their close relatives who were still going strong after 20 years or more after a transplant--it was quite remarkable and more than a little reassuring. The surgery itself is not terribly difficult according to a cardiothoracic surgeon. Heart recipients have told me that the transplant was easier on them than open heart surgery (bypasses, etc.) they've had prior to transplant.

    Hope this helps answer your question! I'm sure others will chime in!

    Regards,
    Rob
    --Living life on the edge .. of a continent!
    Charter member: Tinman Club

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    • #3
      Thank you, Rob.

      I really understood your post and it was a better explaination than I have ever had from my doctors. I am in what is probably the early phase of this remodeling of my heart and have not really understood it all. Your post was clear, consice and very helpful. Thank you.

      Doug
      NEMC's (Boston) First Myectomy 7-22-2003

      Comment


      • #4
        Thanks

        Rob:
        Thanks for the information, it was very easy to understand and made sense. I just like really understanding as much as I can about this disease! I hope and pray James will never need a transplant! Thanks for the info again! Janet
        My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

        Comment


        • #5
          Originally posted by NoCrash
          Once it became known at work that I need a transplant people seemed to "come out of the woodwork" with stories of their close relatives who were still going strong after 20 years or more after a transplant--it was quite remarkable and more than a little reassuring. The surgery itself is not terribly difficult according to a cardiothoracic surgeon. Heart recipients have told me that the transplant was easier on them than open heart surgery (bypasses, etc.) they've had prior to transplant.
          You're on the list? If so, for how long? I have my first appointment with a transplant doctor next Thursday.

          I've been getting the same comments you are. I don't know about the ease of transplant surgery vs. other open-heart surgeries, though. The thought of either still scares the bejeezus out of me.
          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


          • #6
            Rob-
            I too thank you for the straight forward explanation. My cardio likes to draw pictures & go into quite lenghty explanations, this helped . My cardio has informed me that altho I am not a candidate at this time, I'm moving in the direction & will most likely need a transplant. Without this Site, I know I would truly have totally freaked out, as it was I felt less shocked & some what expectant that I would at some point reach that time. Although not a happy thought, I know I can do, when the time comes.
            Thank you all, for being the supportive, Loving group that you are! I have also appreciated the total honesty of everyone's posts.
            RONNIE

            Comment


            • #7
              Janet, Rob did an excellent job explaining. When I reached end stage. The walls of my heart were so stiff they just did not contract hardly. I had a myectomy at 35 and the obstruction never came back. As far as difficulty in surgery. It is not bad. Remember the chest does not have all those muscles to cut through like abdominal surgery. Having had both I will say this is not a piece of cake but not horrible. Janet I hope your son does not have to ever have a transplant but it is nice to know they aer making all of these advances. Rob, where are you listed at (which facility)?.
              Midge

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

              Comment


              • #8
                What i would like to know is it common for both ventricles to be stiff I was told i have now got restrictive diastolic dyfunction

                Shirley
                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                Comment


                • #9
                  Originally posted by shirleymahoney
                  What i would like to know is it common for both ventricles to be stiff I was told i have now got restrictive diastolic dyfunction
                  I don't know if it's common or not, but I believe Maron Sr. spoke of my ventricular problem in the plural.
                  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


                  • #10
                    Since it seems that Rob is out and about today, I will answer two questions for him in his absence (I hope that you are not offended Rob - feel free to tell me to butt out at any time!)

                    Rob is on the transplant list at U.C.L.A. He got his approval a couple of weeks ago. He went to Mayo at Christmas time to be evaluated by Dr. Nishamura, and while he was offered a spot on their list, he opted to go to U.C.L.A. which is much closer to home.

                    We West Coast types look out for each other.....
                    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


                    • #11
                      Hi
                      I too have been told that I will need a transplant in the near future.

                      Thank you for the info Rob. It was well explained.
                      Esther

                      Comment


                      • #12
                        Rob,

                        That was a very excellent explanation and it made it perfectly clear. Thank you . You are a very well informed person and write things so all can understand.

                        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


                        • #13
                          Hi

                          In my case I was always told I would need a transplant, Why? I don't know. But when they said it's time to but you on the list I was a little freaked. The surgery itself was not that bad, it was getting used to a heart that worked so well. The most amazing part of the whole thing was when they let me listen to my heart beat. Transplant is a last resort and no Dr. is going to suggest it to anyone unless they have tried all other options.
                          Karen
                          Karen Cicconetti
                          Heart Transplant 1998
                          Don\'t take your organs to heaven
                          Heaven knows we need them here

                          Comment


                          • #14
                            Very informative!

                            Good to hear success stories like Karens'. I was wondering for the people being told that they will need a transplant one day... Why are they assuming this? What current symptoms can show that you may need a transplant down the road?



                            Theo
                            26 years old, diagnosed April 2005. ICD July 2005.

                            Comment


                            • #15
                              Maybe I can answer that question being the newcomer on having a transplanted heart. Dr. Nish told me quality of life, I could either stay on the drugs and just be here or get a transplant and play and do things with my kids.

                              I just saw my old heart today and let me tell you something, my ventricles were just about closed up. I was non obstructed so I reallt didn't have to many options. The surgery was now problem, I was out of the hospital in 11 days and walking 7 to 8 blocks, but as I have said before the hardest part is waiting to go home if you live out of state. The Mayo Clinic keeps their heart transplant patients in town for 90 days.

                              By the way I just got the results of my fourth biopsy and it came back a grade zero no rejection. So that is something to look forward to.
                              Scott Stanley


                              Heart Transplant June 14th 2005

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