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Beverly Find out more about Beverly
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  • Questions about after transplant

    Midge,

    Can you tell me what will I feel like when I come home from the hospital? I'm still a 2 but at the top of the list for my structure in the 2's so I'm hoping not too much longer. I'm getting worse with all the fluid and my heart functioning is down to about 30 percent but I haven't dilated I've stayed big and thick making it harder to pump effectively. Thank God my other organs are okay still for now. When do they start rehab in the hospital and what did you take for pain and did that med control the pain? I guess part of my problem is that being a nurse I know exactly what id going to happen to my body and it makes it worse thinking about the surgery itself. Did you have trouble with any of the transplant meds? If you could help explain these things I would appreciate it from a patients point of view.

    Thanks! Take care and God bless!

    Beverly

  • #2
    Bev,

    I am going to let Midge catch up with you on this one. She has 1st hand knowledge - which I do not.

    You are in my thoughts and prayers,
    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

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    • #3
      Beverly, sorry for the delay, we were in St. Paul for a Life Source volunteer meeting. As you know everyone is different and each center chooses different anti-rejection meds. I was given morphine initially for pain but I hate pain meds so on day 3 I went to Vicodin for a couple of days and then just Tylenol and ice. Pain was not really bad. As far as reaction to anti-rejection meds. Yes, there is side affects. At first I shook a lot but that gets better. I currently take Rapamune, Cell Cept and 6 mg's of prednisone daily for anti rejection. Sometimes we take meds to counter act the side affects of the rejection meds, such as elevated cholesteral, HBP, a small price to pay for life however. I have to say at the one year mark thinks have really turned for me and the HBP is better, I will always be on meds but I am getting my old independent self back first time in years. I was able to fly to SC to visit my daughter all alone. The trip was harder on my husband than me. Good luck hope your call comes soon.
      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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