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caan anyone share their story of the transplant process?


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cynthiaG Find out more about cynthiaG
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  • caan anyone share their story of the transplant process?

    I have been at Tufs for over a week...my heart is very weak and have been evaluated for the transplant procees. i should know on monday if i am, please pray that i am...this has been an extremely emotional time for me and my family. did not expect this . thanks for any encouragement
    \"It is not length of life, but depth of life.\"

    Ralph Waldo Emerson

  • #2
    Re: caan anyone share their story of the transplant process?


    I have been anxiously awaiting an update from you! I'm sorry that you have had to deal with so much in such a short amount of time! I'm sure you and your family are very overwhelmed right now! I know from our conversations that you are a strong person, although I'm sure you're not feeling too strong right now or at the point where you are tired of being strong! I want you to know I am thinking of you and praying for you and I hope you get the answers you are looking for on Monday! Please keep me posted!
    Heather, 43, non-obstructive HCM, dx'd at age 14, AICD implanted 11-02, PVAI ablation done for a-fib and a-flutter 5-2010. 2nd PVAI done for a-flutter and a-tach 3-2014. 3rd PVAI for a-flutter June 2015, dr forgot to reset ICD settings and I went into vt and almost died, July 2015, July 2015-started tx work up, October 2015, put on list in Dallas and tx'd on November 14, 2015.


    • #3
      Re: caan anyone share their story of the transplant process?

      Cynthia - We are all very concerned about you and are hoping that things will fall into place you to recover soon. I am glad you are in a place where they will take good care of you.


      The other Cynthia
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.


      • #4
        Re: caan anyone share their story of the transplant process?

        Cynthia - my prayers and best wishes - will be watching for updates. I'm so glad the internet is so available for us all - Linda


        • #5
          Re: caan anyone share their story of the transplant process?

          You are right where you should be (one of the best COE's) where you will get the best management and care available. We are thinking of you and do understand how things are sitting on a slippery slope right now. Try to rest and take that extra burden off your heart. More easily said than done.
          Onward and Upward !

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


          • #6
            Re: caan anyone share their story of the transplant process?

            Cynthia, please know you are in a great facility. Right now the waiting and wondering is the most difficult. Hang in there and we will talk again soon.

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


            • #7
              Re: caan anyone share their story of the transplant process?

              Thinking of you and sending many positive thoughts and prayers.
              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


              • #8
                Re: caan anyone share their story of the transplant process?


                I'm sorry you are going through this at this time. I know it's hard to believe this is happening to you -- like the first time we learned we have HCM... Have faith, the doctors will take good care of you. Transplants are much more common and successful these days. Prayers & Hope are sent your way.

                Diagnosed 09/2009 @51 yrs old- HCOM
                Myectomy 2/17/2011
                Son & Daughter no findings as of yet (echos)
                No family history determined yet -- 1 sister, 2 brothers & extended family.


                • #9
                  Re: caan anyone share their story of the transplant process?

                  Take heart you are at a COE when I went through the eval it was at a less than stellar place and I left more dejected than hopeful. You will get what you need. Have faith and rest if you got friends and family hand the reins over to them and don't worry. Worry I've found gets us nowhere. I will be thinking about you.



                  • #10
                    Re: caan anyone share their story of the transplant process?


                    Good luck to you - I hope that you get good news on Monday. I know it sounds weird to think that being listed for a heart transplant is good news but, in the end, it's an opening to a new life! My husband had is transplant in December 2009 and he has never felt better in his entire life. The initial process to be listed was stressful and full of a variety of different tests, some inpatient vists, some outpatient visits. The time between listing and transplant was scary because Kirt's heart was failing fast. Kirt was one of the lucky ones, he had a very short wait for a heart (12 days - thanks to him having a rare but good blood type and him being that sick...). The first 5-6 months post transplant are rough, each day gets better but it took Kirt the 5-6 to feel good, towards 7 months he felt really good and at 9-10 he felt great, now he feels incredible. While it is very scary, it is definately an amazing, life giving process.

                    Are there specific questions that you have? We are happy to talk about our process either one on one or through an instant message board.

                    Tammy (Kirt's wife)
                    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


                    • #11
                      Re: caan anyone share their story of the transplant process?

                      I confess to not checking this forum for several months. It is amazing how quickly I can put thoughts of medical issues out of my mind when the crisis is past. We never appreciate health until we don't have it.

                      So an update...For those of you who have followed this thread for several years, you may recall that my daughter Emily was transplanted at age 16 at Children's Hospital in Boston after being treated at Tufts by Marty Maron for a very aggressive form of HCM that was triggered by a mitochondrial defect. To answer Cynthia's request about explaining the transplant process, I think the easiest way to describe what we went through is to read Emily's blog at www.emilysatrium.org. Start at the end and work forward to retain the chronology.

                      Like everybody says, the worst part is the waiting, while experiencing a decline in health that will only end one way without the transplant. The surgery and post-surgical days are scary, but for Emily they went without serious complications, although even the "minor" complications were plenty to deal with. These included burning from the gancicliver induction medicine along the vein, temporary damage to the larynx, pain (obviously), serious problems with a PIC line, nausea from the immuno-suppressant meds,, mood swings, etc. But they passed, and in the months after the surgery we got to see our daughter get healthier than she'd ever been. We got to see her graduate high school on time, with honors, and with respect from all her teachers for the effort she made to catch up with her class.

                      Now, 2.5 years later, she is at college (Simmons, across the street from Childrens). She takes her med twice a day, exactly 12 hours apart, which is a clear reminder that she is still on a short leash to the medical system. They no longer make her sick. We worry about the availability of the meds in the future, and right now she is chasing all over Boston trying to get a prescription for Myfortix filled. Her heart (the one in her chest, not the one in the freezer at Childrens) works wonderfully, but she is often reminded that she wasn't borne with it. Its response to exercise is not normal, since there are no nervous connections to it. Her resting heartbeat is about 100, and if she exercises it come up to 150 from the hormones that are released and stays elevated for half an hour or more, which annoys her. She teaches swimming at Simmons, and is very careful to avoid exposure to infection (Purell, the "smell of safety.").

                      If you have any specific questions don't hesitate to ask here or via PM. Be careful about paying much attention to the web. Much of what you read is old, based on older drug regimes that are based on massive cortisone treatments that result in weight gain, hair growth, and permanent mood changes. Emily is 5'7, 110 pounds, with clear skin, and, pretty (no parental bias there!). So look forward to the heart transplant. It's better than chronic illness and heart failure!


                      • #12
                        Re: caan anyone share their story of the transplant process?

                        As my dad said, we don't pay close enough attention to the forums anymore, but I thought that if you were bored or wanted to read one experience of transplantation you could read my blog. In the weeks directly before and after transplant my parents posted almost every day. http://www.emilysatrium.org/ I think its a generally uplifting story considering I'm still alive and well. I wish you the best and hope, like me, this will someday be basically over for you.
                        Love to live. Love to be a kid.