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juliuskay Diagnosed 98
juliuskay
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  • Post Transplant Problems

    My brother had a heart transplant in February and is having many problems. It's been six months and he isn't any better than he was before he received the heart. The heart is healthy, the problem is the other organs. First he had problems with retaining water in his stomach, they put a shunt in his liver, which fixed that problem. Now, he has fluid in the lining of his lungs. They keep draining them, but can't figure out where's it's coming from. They say it's not coming from the heart. First they said it was a fluke because all the tests keep coming back negative. Now that it has come back three different times (every other week he has to have it drained), they're getting concerned. It's not from the heart, they say it's an infection, yet when they run blood work and test the fluid, it all comes back negative. Any suggestions as to what this could be?
    Kay Julius
    Diagnosed '98
    Defib 02 in St. Louis
    Myectomy 03 at Mayo in Rochester
    One son diagnosed at age 3 in 2002 Defib implanted 2004
    Other son diagnosed at age 14 in 2010 defib implanted 2010
    5 out of 7 siblings positive for HCM with Defibs, 3 neices diagnosed with defibs, 1 nephew (died suddenly at age 10), 1 great-nephew diagnosed at age 1 month
    Brother age 50 transplant in 09 at Barnes in St. Louis

  • #2
    Re: Post Transplant Problems

    I am sorry he is having these problems. Sometimes it takes the body's other organs to wake up and realize they do not have to work so hard anymore. When in serious CHF it is harmful to all the other organs also. There can be a build up of pressure in his lungs pre transplant that can take a while to correct itself. I was told the first year is the toughest. I really cannot give you any definitive answers, if there are any. It sounds like his transplant team is on top of this and working hard to find the problem. Please let us know what they decide.
    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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    • #3
      Re: Post Transplant Problems

      I am so sorry about your brothers ongoing problems. I don't have anything to offer other than to continue to provide support. I can't imagine how tough this has been on him.

      Keep us posted on what you learn may be the cause of these ongoing issues.

      Linda
      Onward and Upward !

      Diagnosed 4/07 HCM with fixed & dynamic obstruction
      Myectomy with resected cordonae tendonae 4/08 CCF
      ICD 10/08

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      • #4
        Re: Post Transplant Problems

        I'm sorry to hear about these problems. I hope you get some answers soon.

        Gordon
        Myectomy on Feb. 5, 2007.

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        • #5
          Re: Post Transplant Problems

          Kay .. just to let you know I am sorry also for your brothers ongoing struggles please let him know we are all praying for him.

          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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          • #6
            Re: Post Transplant Problems

            Thanks for all your thoughts and prayers. He did come home yesterday, still don't feel the best, but home. Hopefully they will find out what's going on soon as depression is starting to take over. Thanks again for your support.
            Kay Julius
            Diagnosed '98
            Defib 02 in St. Louis
            Myectomy 03 at Mayo in Rochester
            One son diagnosed at age 3 in 2002 Defib implanted 2004
            Other son diagnosed at age 14 in 2010 defib implanted 2010
            5 out of 7 siblings positive for HCM with Defibs, 3 neices diagnosed with defibs, 1 nephew (died suddenly at age 10), 1 great-nephew diagnosed at age 1 month
            Brother age 50 transplant in 09 at Barnes in St. Louis

            Comment


            • #7
              Re: Post Transplant Problems

              Being in your own home is always a good thing. Keep us posted on what you learn.
              Linda
              Onward and Upward !

              Diagnosed 4/07 HCM with fixed & dynamic obstruction
              Myectomy with resected cordonae tendonae 4/08 CCF
              ICD 10/08

              Comment


              • #8
                Re: Post Transplant Problems

                Kay,
                I'm glad to hear an update from you, although I wish it was better news. I'm really sorry to hear that your brother has been having all these difficulties. Please know I'll be keeping your family in my prayers.
                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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