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Transplant Final Decision

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Bob in Texas Find out more about Bob in Texas
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  • Transplant Final Decision

    I want to be as humble as possible and have contemplated several days on how I would post this. To all where the transplant option is you final option and you wait in the wings for approval or have been denied, I bow my head in silence. I have been officially approved for Transplant and have been placed on the nationwide list. My insurance company at the same time approved me for an LVAD. To everybody out there HCM is a wicked disease, very complex and can move rather quickly, I am living proof. From my original diagnosis 21 months ago, I now wait on my next step in this journey.

    I would like to publicly thank Dr. Martin Maron from Tuft's (Boston) for who I am totally indebted from his original diagnosis. He has supported me since my decline and even worked in conjunction with my Transplant Team here in Dallas, Texas. From the beiginning, he told me my options were very limited and my case was extremely difficult and complex. He continually suported me and most important has shown a great deal of compassion which is a rare trait.

    Peace,

    Bob
    Diagnosed HCM 03-2009
    6-2009 Evaluated at Tuft's ICD/Pacer implanted/diagnosed with DD and severe scarring/no obstruction
    8-2009 Evaluated at the Cleveland Clinic/Myectomy recommended/gradient w/Armyl Nitrate
    10-2009 Myectomy CCF
    11-2010 Approved for Transplant Listing

    "I no longer live but exist" Bob in Texas.......

  • #2
    Re: Transplant Final Decision

    Bob - Wishing you the best of luck as you begin this journey. Will you be getting an LVAD now until you find a heart?
    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.

    Comment


    • #3
      Re: Transplant Final Decision

      Bob,
      Take care. My mom has been living an extremely full life since her transplant over six years ago. I wish you the same outcome...

      Kaye

      Comment


      • #4
        Re: Transplant Final Decision

        Bob, I know how you are feeling, scared but excited at a chance for an active life again. Please know I am here for you and please feel free to come here whenever and share your feelings.
        Midge

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

        Comment


        • #5
          Re: Transplant Final Decision

          Bob,
          Thank God for modern medicine and those who walked the HCM path before us. And especially to the brave men, women and children who died or lost a loved one and responded to the request with one word........"yes". I wish you, your family and your eventual donor and donor family nothing but lots of grace and peace as you all walk down this path.
          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: Transplant Final Decision

            Bob.

            Prayers for courage and peace as you walk through this next phase of HCM.

            Leon
            God Squad co-moderator
            Nothing is as gentle as strength and nothing is as strong as gentleness

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            • #7
              Re: Transplant Final Decision

              Bob, difficult as this is, I somehow think you will gain a certain amount of peace as you have a definitive plan developed. It's been a long, tough journey with so many roadblocks - not just bumps for you -

              Thinking of you, wishing you the best - Linda

              Comment


              • #8
                Re: Transplant Final Decision

                Bob,
                I'm glad things can move forward for you.

                I hope the wait isn't too long; keep us posted as to how you're doing.

                Gordon
                Myectomy on Feb. 5, 2007.

                Comment


                • #9
                  Re: Transplant Final Decision

                  Bob - Ive read a lot of your posts and know that you have had a very difficult time the last year or two. I often wondered how I would cope if I were in your position. I really glad to hear you are finally going to get the appropriate treatment. I wish you all the luck in the world. God be with you. Mike

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                  • #10
                    Re: Transplant Final Decision

                    Hey Bob
                    Thanks for the update. I'm sending you positive thoughts, energy and love. Hang in there. I know things will work out for you, Bob. You're going to be our" Male Midge" !
                    Keep us posted !!!!
                    peace
                    mariab

                    Comment


                    • #11
                      Re: Transplant Final Decision

                      Bob,

                      I know this has been a very eventful journey for you and I am so very happy to know that you have the ability to progress to this next phase.

                      You have always been so very strong - may God continue to strengthen you and give you peace throughout this process.

                      I am so very happy for you.

                      Nellah

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                      • #12
                        Re: Transplant Final Decision

                        So happy for you , i hope you get a heart soon
                        transplant was the best thing that ever happen to me , i still get kicks out of the little things in life

                        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


                        • #13
                          Re: Transplant Final Decision

                          I wish you every good thing and a VERY short wait! I have personal experience with the incredible good a transplant can do. My granddaughter, Sara, had one in March of 2009, and she is doing incredibly well, with no major difficulties at all. Adjusting to the drugs was probably the most difficult thing, but even that wasn't bad at all. She is now a Freshman at University of Connecticut, with a Biology major and plans to be a Pediatric Cardiologist!

                          My hope for you is that you have a similar outcome! Best of all wishes to you.

                          Comment


                          • #14
                            Re: Transplant Final Decision

                            Bob,

                            Glad to hear that this is working out for you. You have been through so much. My thoughts and prayers will be with you.
                            ICD 1/20/10
                            Myectomy 8/25/10
                            @ Johns Hopkins
                            Surgeon Duke Cameron

                            Comment


                            • #15
                              Re: Transplant Final Decision

                              Glad to know that a doctor is watching out for you and you have the upmost confidence and respect for Dr. M. Maron. Best of luck on your journey to a new life.
                              Laura
                              HCM & diastolic/systolic HF (burn-out HCM) DX in 2010
                              Brother 34, sister 45, & mother 73 passed away from HCM burn-out/CHF/DCM
                              Sister @ 41 got heart transplant on Valentine's day 2002
                              Oldest sister, diagnosed with HCM in 2010
                              only niece cleared by genetic testing; son not genetically tested yet
                              Suspected HCM in maternal grandmother (d. 39), 2nd cousin (d. 33),
                              maternal grand aunt (d. 51), & maternal great grandmother (d. 50s); with hrt. conditions/hrt. surgery/kidney d.

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