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The Wait

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SarahHCM Originally from Minnesota. Married, 2 children. Diagnosed HCM 1993. Myectomy 2006. Advanced Heart Failure-stage 4 Find out more about SarahHCM
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  • The Wait

    The stress and anxiety is overwhelming. My fear is I feel like I will
    be trading one health problem for several others. I don't want to spend
    the rest of my life in and out of hospitals, being paranoid of catching
    colds...and how am I going to be able to pay for it??
    I have gone to school, worked, owned a home and have kids that are
    18 & 19. I'm proud of these accomplishments and I want to travel, see
    my kids married and have grand children...or do I say nature is
    telling me "its just my time?"

  • #2
    Re: The Wait

    Having a transplant you are trading one issuse for another but its on so much of a different level you will have issuse here and there but a good 90% of the time you will be living a normal healthy life, so its so dam worth it .
    ok we do catch cold flus bug ect easier but the one thing the doctors forget to say is not everytime you get sick it will it be a big issuse a good amount of the time its just a matter of maybe been sick a day or so longer then "normal" people, like now i have a flu and iv proable had it for about 6-10 days but its not bad enought to go to my GP or hospital for im just letting it run its course, the whole time iv had my transplant iv never had any bugs that iv been extra sick with, i use to say to my docotr i dont know what you guys go on about with my immune system and all i never feel any different when i get sick.

    Having my heart transplant was the best thing i ever did, i would do it again in a heart beat, i would rather have the isssuse i get from my transplant then the isuse i had with HCM, you will get to liive a normaal life again what more can you ask for in life

    And as for the cost i spent more timer in hospital before transplant then i did after transpant ,since i had my transplant iv only been in hospital about 4ish time and my transpalnt was 2 and a half years ago before transplant i was proable in there monthly

    Margi
    Margi*
    http://margi-inskeep.blogspot.com
    Forever Young

    I was diagnosedwith HCM at 6.
    Went into Atrial fibrillation so had a ICD put in at 16
    Went into Heart failure at 17
    Got a heart transplant at 21(2009)

    Comment


    • #3
      Re: The Wait

      Hi Sarah
      It certainly is frustrating this 'wait', like you I have teenagers, have always been productive and extremly active. Was told when diagnosed that I'd never get a heart as status II, and my blood type(o+ universial donor but limited receiver) made it tuff, and no LVAD would work on my heart.I flutuate from a little depression, to anger, and then to benign resignation over this desease and the need for a transplant,but my faith in God and the principle that any day above ground beats being under ground keeps me going.You're trading a morbid health situation for a cronic one, and most of the people I've met, that are post transplant,they've been returned to a pretty normal life, with most having to diminish a lot of those drugs you first have to take after a transplant over time. Getting there is daunting anyway you look at it, I wake up each morning wondering "do I feel worse today", obsessing about my symptoms,and hopeing they will move me up to status I b or a. Find a support group in your area of post and pre transplant people it will help.

      Have faith, John F.
      had HCM since birth
      'enlarged heart' identified in 96'
      HOCM dx in 7/08
      Myectomy 8/09
      extended Myectomy 5/10
      'End stage' HCM dx 8/10
      CRT-D implanted 9/10
      evaluated for Transplant 11/10
      Listed for transplant 6/11

      Comment


      • #4
        Re: The Wait

        Getting a transplant is like trading being parapalegic for having a twisted ankle. Honestly, having a new heart is something you notice from time to time, an annoyance that you think about often, but it frees up your world so much that you forgive that annoyance and and simply thank everyone involved that your world is now open to you. You go to the hospital, but not every day or every week, and I haven't had to live there since the transplant. I have never had an illness worse than a cold in almost three years with just a little germophobia. You have to take medicine, but you are already doing that now. Having a transplant allows you to do things that you didn't know you wanted to do. Its not even cheating death so much as accepting life. Its worth it. I promise.
        Last edited by EmilyOrange; 10-16-2011, 03:54 PM.
        Love to live. Love to be a kid.

        Comment


        • #5
          Re: The Wait

          Emily,
          Those words are not only enouraging, but profound. Thank you for sharing what's on your heart.
          Linda
          Onward and Upward !

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

          Comment


          • #6
            Re: The Wait

            Amen to what Emily says. Right now I am facing the fact that my husband has pancreatic cancer. He has never spent a night in the hospital. My transplant seems like a walk in the park in comparison.
            Midge

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

            Comment


            • #7
              Re: The Wait

              Midge I'm sorry to hear this, did they catch it early? I hope they did, your entire family is in my prayers

              Hugs
              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


              • #8
                Re: The Wait

                Midge,

                Your husband will be in my thoughts and prayers
                \"It is not length of life, but depth of life.\"

                Ralph Waldo Emerson

                Comment


                • #9
                  Re: The Wait

                  I am awed by Emily's wisdom at such a young age. My husband is almost two years out and the past 18 months has been the best of his life. It is definately worth it. To repeat words of wisdome that were told to us by a transplant recipient that was 15 years out "Like I tell everyone, I wouldn't wish this on anyone but if you need it, the transplant will be the best thing that can happen to you".

                  Everything Emily said is true. It is definately worth it.

                  Tammy Star
                  Kirt S
                  Age - 44
                  HCM since childhood
                  Long family history of HCM
                  Myectomy & ICD in 1992
                  Bi-ventricular device in 2006
                  Heart transplant 12/29/09

                  Comment


                  • #10
                    Re: The Wait

                    For what it's worth, since my transplant in 06 I go drag racing, autocross racing, re-modeled our house, and love being here with with wife, kids, grandkids, and friends. You're right, it's trading one disability for another (meds). This one I can live with. 100% better than when I had HCM and was in chronic A-fib.
                    It is a journey for sure, but one that brings many rewards.
                    Four years ago I started a heart transplant support group. I want to share a story about it. There was a man who was told about our group, he was told he needed a transplant and wanted nothing to do with it. He did come to our annual summer BBQ and was amazed. He thought we'd all be living dead, zombies. But when he saw us and our families, heard the stories of life after transplant, we have some folks that do amazing things like a lady that is a senior tennis champ, one that travels the world, and the rest enjoying life the best we can. He was enlightend and is now awaiting his transplant and new life.
                    Bottom line, don't ever give up and try your best to be positve and surround yourself with love and positive people.
                    God bless you, it aint fun but it's well worth it all.
                    Last edited by SteveArbo; 11-14-2011, 11:56 AM.
                    Heart Transplant 7/16/06 - PRAISE GOD

                    Comment


                    • #11
                      Re: The Wait

                      Very good Steve. Have you been involved in the US transplant games? They will have them in July of 2012
                      Midge

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

                      Comment


                      • #12
                        Re: The Wait

                        Steve, Emily, Midge, all - Thank you for paying it forward.
                        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 . . .

                        Comment


                        • #13
                          Re: The Wait

                          Some of the major transplant centers host monthly dinners for those who have received transplants, and those who are waiting. I've been to a few, and they are awesome. You might want to check with your transplant team and see if they have them. It's a great opporunity to meet folks who have been through the process (like the posters here) and to ask questions. The stories they tell, and the things they do in their lives, are just amazing.

                          (The dinners are sponsored by the regional organizations that oversee the transplant process, and some of the medical companies.)

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