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Beverly Find out more about Beverly
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    I keep asking the same questions and no one seems to want to answer them straight forward. So please be honest with me. I want to know what the post surgical piece is like. From the moment you wake up to the moment you feel normal again. I've been waiting now for 5 months now and the wait is hard but what's hardest is that I'm a outgoing person and can't do the things I want to do. I feel very stuck in this and my family is very stuck too. My kids want thier Mommy back and my husband and I want to continue our life and I want to start doing whatever God reveals is his plan for me. For all those waiting this is the season to learn all about God and his word you can, Realize that believing in God is not enough you have to believe in his mighty power to preform miracles and his word proves it. Take care and God bless!

    Beverly

  • #2
    Beverly, I'm hoping Midge can help, but remember that everyone is very different. There aren't many here who have been through this, but all would have different experiences. You're still in my prayers.

    Reenie
    Reenie

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

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    • #3
      Beverly, if you are talking about pain, yes there is some. I did not think it was as painful as abdominal surgery. (not as many muscles). I woke up about 15 hrs post surgery. I was able to talk (after tubes were removed) laugh with my family. I told the Drs. my toes were hot. (first time in years). Some of the meds they give you initiallly to prevent rejection were pretty potent and made me shaky, that is why they are done IV in ICU. With in a day or so I was sitting up, taking walks. I spent 2 weeks in hospital, average is 9-10 days. I had a few issues with my kidneys. All of that turned around. Yes, I was tired and weak for a while and impatient as I thought I would be able to walk 2 miles right away. I can tell you that even in spite of some prednisone moments, I would do this all over again. I exercise daily, I can lay on my left side first time in years. (little things excite me). I am almost 11 months out and do I feel normal I guess I am not sure what normal feels like. I do know I feel better than I have in years. Yes, there are still some bumps in my road but the Drs. are on top of it and change medicines and even with the bumps I do not feel like throwing in the towel. Like Reenie said everyone is different. Yes, you are in the hardest phase right now. I am currently at Mayo, for a check up and went to visit the people that are in the hospital waiting for a transplant today and told them the same thing. I pray you get your heart soon. Keep up your faith. My kids who are adults cannot believe how good I am. I wish I could tell you exactly what will happen. Please let me know what more I can tell you. Thinking of 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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      • #4
        questions

        Midge,

        I know that everyone is different, I guess I'm not really worried about the pain I know they can control that with meds I'm more worried about waking up and feeling suffocated with the tube in. Being a nurse is not to my benefit right now. I know to much and that just increases my anxiety instead of helping me get thru this. Thanks for doing this forum, I think there are enough of us now that it's needed. I hope I can help when I'm all done. I just want to be able to take care of my family again and not feel so restrained.

        Take care and God bless!

        Beverly

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        • #5
          Beverly,

          I can't reply about a transplant but I know where you are coming from , I too am a nurse. That tube was one of my biggest concerns I had going into the myectomy. Post myectomy I did not want to wake up with it and of course I did. The thing about it is as you improve over the hours following waking up you are still drowsy and thankfully fall back to sleep here and there. I tried to focus my thoughts on just trying to let the time move past. Putting my conscious thoughts away from it helped. I focused on getting to the next day. I did this for each tube removal . If a tube came out that very day it was a bonus and then I'd focus on the next tube and trying to get through the next day. I remember DR. Maron asking me to force a smile for him . That made me smile. He told me to hold onto the thought that day three would be a turnarond and it was. He was right.

          I am not sure with a transplant if the day is correct but maybe Midge can recall which one she felt started the turn around for her.

          I hope this helps. We nurses do tend to be very concrete and love our shedules and agenda's to be in order.

          Thoughts and prayers.

          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
            the big turn around for me post heart surgery for my myectomy 25 yrs ago and my transplant was getting off the respirator and getting to talk. I have to admit that this 2nd time around it was not as bad because I knew it was coming. Plus, I was pretty groggy and just did not fight it. They keep you pretty sedated. But me being a talker that was the best tube to have removed. Post transplant, I never really felt bad, I had some extra problems initially, with a lung and kidney failure but that all turned around so I guess by day 5 I would say. However, most transplant patients were going home by 9th or 10th day. I just wanted to be special and stayed 2 weeks. I am an x-ray tech and I know we medical people tend to stress out a little more than most. You know that saying a little knowledge can be a dangerous thing.
            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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