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  • Need to gain weight to stay on list??

    This one is for the "transplant experienced" people....

    We were at the transplant clinic today (my husband has been listed since November) for his monthly check up. He is losing weight on a steady down hill path. They warned us that he cannot lose too much weight or he will no longer be a transplant candidate.

    We are feeling a lot shocked, we try to do everything with his diet (nearly 0 salt, fluid restriction nazis etc...) to keep him healthy. I don't know what to do now to help him aside from making him have 3 milk shakes a day

    Did any of you have to deal with this problem....any suggestions???
    Thanks in advance

  • #2
    Re: Need to gain weight to stay on list??

    How about those nutrition supplements, they come in flavors. Otherwise just lots of high caloried low salt food. Good luck
    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: Need to gain weight to stay on list??

      They do make high protein "weight-on" powder supplements, but read label carefully to avoid any salts, caffeine, and other no no's. For some odd reason, the manufacturers think body builders like speed!
      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 . . .

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      • #4
        Re: Need to gain weight to stay on list??

        When my mother in law had cancer we fed her Ovaltine chocolate ice cream shakes which did make her gain some weight

        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

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        • #5
          Re: Need to gain weight to stay on list??

          So your husband may well be experiencing a condition called cachexia which many patients in an advanced disease state experience as reflective of metabolic conditions going on in their illness. You should ask the doctors caring for him if there is a safe appetite stimulant that he may benefit from in conjunction with supplemental nutrient feedings. Because... actually if he has no appetite from the disease process he may not be able to or willing to down those supplemental drinks / shakes and what not.

          Here is one link:

          http://www.caresearch.com.au/caresea...4/Default.aspx

          I am very sorry he is going through this.. it is a most troubling symptom and condition to experience while waiting for a transplant.
          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: Need to gain weight to stay on list??

            Sara had a similar problem when she was listed. As a matter of fact, due to the fact that her appetite was so diminished, Dr. Blume moved her up on her waiting list status.

            This is what worked for us:

            1. Milrinone - we're not 100% sure why this worked, but the doctors felt that it increased blood flow to the stomach, which caused her to feel more hungry and more easily able to digest food. Check with his doctor for a professional opinion.

            2. Scandi shakes - you can find the powder mixes online. It tastes MUCH better than Ensure or any other high protein, high calorie drink we've tried. I believe one Scandi shake contains over 600 calories, is very low in sodium and they're available in chocolate, strawberry and vanilla. Sara really liked the chocolate shakes - especially when poured over ice. Keep in mind, though, that they are very filling.

            Best of luck.

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            • #7
              Re: Need to gain weight to stay on list??

              You might want to check with his doctors about getting IV feedings which are extremely high in calories. Sometimes a feeding tube can be placed so the feedings can be done at home.

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