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The Silver Lining

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AliBear Find out more about AliBear
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  • The Silver Lining

    We spend a lot of time on this thread talking about debilitating symptoms, our scary diagnoses, and our "numbers". The Transplant thread can be a scary one to read and join. I thought it would be nice for those of us who have had a successful transplant to talk about the positives, and how our lives have changed for the better. And, for those who are are listed or think they may be listed in the future, to think about and share what they are looking forward to when they get their "beautiful new heart".

    I'll start!! Life prior to transplant (Nov '04) was very difficult. My day had to be scheduled carefully, and was usually limited to a single activity (movies OR dinner). Life is SO different now!! I do whatever I want, whenever I want!! I go to the gym several times a week, play racquetball whenever i get the chance, and have even been ROCK CLIMBING ...so cool! I can do 10 things a day and never once have I been tired. My heart transplant was the best thing that ever happened to me. The tough road definitely paid off!!!

    Ali

    Share your positive experiences!!!
    Proud Heart Transplant Recipient - November 6, 2004.

  • #2
    Ali, you are so right. I know I have posted before about how great life is post transplant and I am only too happy to do so again. I am older (59) than some who have been transplanted but my life has done a 360 dg turn for the better. I just returned today from 4 days of helping our daughter move and I am still going. I am back swimming, walking and working part time. I can enjoy my kids and grand kids in a way I have never been able to . As I have said many times before the hardest part of the transplant journey is waiting after that the road may have a bump or two but no comparison to pre transplant. I have learned LIFE IS A BLESSING AND WE NEED TO ENJOY EACH AND EVERY DAY.
    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
      Thank you for starting this thread. It's just mind-boggling to think that one can receive such a wonderful gift and have it function so well! A big THANK YOU to all those donors, Bless them all. Linda

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      • #4
        Thanks Linda, and I feel awful about not mentioning my donor and everyone elses. Without their wonderful gift of life those of us survivors would not be here. God Bless Them.
        Midge

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

        Comment


        • #5
          Having my heart transplant has been a miracle. I have spent the last 7 plus years trying to let people know what an amazing gift I have been given. I haven't had the privilege to know my donor family or know her name. But I still send them a letter thanking them every year . Transplant is a very scary time for people, but for me I was so sick I looked forward to it. Since I received my new heart I have done so many things i would never have dreamed of before. I have met many people from my transplant program that all they can do is complain about the meds, there side effects,etc. I sit their sometimes in absolute amazement. Till one time I had to say be grateful for your wonderful gift and second chance at life cause their are many others who won't get this opportunity. I thank God and my donor every day I 'm here. For me transplant has been truly wonderful. I don't know what lies ahead but I know whatever it is I have wonderful people to travel with.

          Karen
          Karen Cicconetti
          Heart Transplant 1998
          Don\'t take your organs to heaven
          Heaven knows we need them here

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          • #6
            Once a month, I talk to a court-mandated substance abuse offenders group - young people. I spend a portion of my program on organ donation. I always seem to get their attention when I tell them that they have the option of abusing their body or taking care of it, but if they want to live irresponsibly, please become an organ donor. I tell them that the recipient will take VERY GOOD care of their organs. You all are testimony to that! I may begin to elaborate a bit more on how active some of you are now able to be. I'm thrilled for everyone! Linda

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            • #7
              You guys are great! Thanks for sharing these positive stories - they really motivational!

              Thanks!
              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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              • #8
                Well here is my story, 3 years ago I was like most of you I had a hard time staying put, My husband always said i was Hyper never sit still. But for these last 2 year has been hard on me, if i go grocery shopping i'm done for the day, so I also pick and choose my activities very carefully, I try to do things in the mornings, but i know one day i will be on the list as soon as my vo2 gets low enough and i hope it will be soon, i know no one wants a transplant but i want my life back

                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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                • #9
                  Thank you all so much for responding and talking about some of the positive aspects of transplant life. To most the term "transplant" is scary, but the fact is, with a new heart and a positive attitude post-transplant life is unbelievable. I know for us HCMers, fear is large part of our lives. I am so grateful that I don't live life with fear anymore. Now I live life with joy and curiosity.
                  Another post transplant positive for me.... Tonight was my first "official" night back at school!! I'm getting my Masters, and had to take the majority of last year off. But I'm back, and it was such a great day!

                  Thank you for the positive stories and posts...keep em coming, I think they help to make us feel good.

                  Ali
                  Proud Heart Transplant Recipient - November 6, 2004.

                  Comment


                  • #10
                    Congratulations Ali!

                    I too will be heading down the transplant path. I still can't fathom how my life has changed in less than four years. But, this is something I am ready for.

                    I was just speaking to my couselor about it today. She asked me what I thought I would do when I got my new heart. I told her I was going to change the world. I will go on to a University get my M.D/PHD and help people. I had given up that dream when diagnosed with this disease but now that vision is starting to come back into focus. How amazing would it be if I found the cure for HCM or at least away of preventing on the cellular level.

                    Not only will I aspire intellectually though. Because, look out world here I come. I'm gonna ride the tires off of my bike Lance is lucky he's retiring :P . Then I'm going to hike the Freedom trail all day long. I"m going to relish in one of my loves the American Revolution. I'm also going to learn a martial art so I can keep my body in tune with nature.

                    And lastly I'm going to learn how to play the piano. It is something I've always wanted to do! Nothing can lull my tired, stressed mind better than Canon in D or Exhibitions at an Art Museum.

                    As Lisa and many others have noted I only know of two speeds. Fast and faster and I can't wait to get back to them. But, I'm also going remember the times when I could not do that and embrace that with a slow purposeful walk to take in all that life has to offer.

                    So you think I'm ready for a new heart or what?

                    Mary S.

                    Comment


                    • #11
                      Mary S.,
                      You sound so enthusiastic about getting your new heart! Its wonderful to hear. Waiting in the hospital before I got my heart my family and I would spend hours talking about all the things I will be able to do when I get my new heart! Doing that really kept me focused on the task, as well as helped to give me a good attitude about the situation. I think you are SOOOOO ready!!!

                      Ali
                      Proud Heart Transplant Recipient - November 6, 2004.

                      Comment


                      • #12
                        Thanks Ali and everyone else

                        Ali thanks for starting this section. It really made me smile. I am 31 and waiting for a heart.I've been waiting since October of last year. Have been a backup twice.
                        I think Of all the things I will be able to do after transplant. One of the things is one thing you listed rock climbing. I love nature and hiking and due to my poor health don't get to do a lot of it . I want to see every National Park in the USA before I die. Don't know if that is possible but I am sure going to try. So far I've been to the everglades and Yellowstone. So I have a lot more to see lol.
                        I also have always wanted to write a book. One on the environment and one of my poetry. I am a singer and want to learn how to read music and the piano. I can play keyboards a little bit but need to learn more.
                        I also want to go back to school. So far I have my associate's degree in liberal arts. I want to get my degree in environmental science. The possibilities for all of us are wonderful. So watch out world here we come.
                        Kimberly K. Plaster

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                        • #13
                          So Kim,

                          I gotta great National Park to come to here in Florida. It's called Blue Springs. Temp is 74 degrees all year long. We'll go together and float down to the St. Johns and forget about this whole heart condition bit for a little while!

                          I also write poetry. Don't know if I'll ever publish it but it is my one way to really release all of my fears, angers, and joys.

                          I hope you get your new heart soon!

                          Mary S.

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