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6 Days Post Transplant - So far, So Good

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SteveinMadisonAL BSEE University of Alabama 1985 & MBA Auburn 2002, married with 3 daughters (18,21,23), active, healthy except heart! Find out more about SteveinMadisonAL
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  • 6 Days Post Transplant - So far, So Good

    Hello Everyone,
    It's been awhile since I posted that I had been listed for a transplant, status 1B. I actually spent most of January de-listed due to lung nodules that needed to be investigated. I was relisted again in late January. I got my second donor offer last Sunday, February 12, and off to the University of Alabama in Birmingham my wife and I went. It was a match and a go, after about 4 hours of surgery that started at 3:38 AM Monday morning; I had my new heart, a loved-filled gift of life from a grieving family. It will be cherished a lifetime! I'm now 6 days post-op and doing great, I have walked 3 miles in the Heart Transplant ICU unit today, a new record. Learning about all the medications is a bit overwhelming, but I think I’m going to get it down soon. I’ll be here a few more days while they check me for rejection, then off to our local apartment for 6 weeks so that I can be close to the hospital for quick response. Here’s the unbelievable news: for years now, I have been diagnosed with HCM. When UAB took my extracted heart to pathology, they found the “worst case of cardiac sarcoidosis they have ever seen!” Cardiac sarcoidosis is rare, hard to diagnose, and tends to follow ethnicity in males. My dad as done genealogy research on our family line for years and has traced our family line back to Denmark in the 1500’s and England in the 1700’s. Research shows sarcoidosis is more prevalent in white males of Scandinavian decent. I’ve been an HCM poser, sorry!
    Love to you all,
    Steve
    A/V Heart Block 2009
    Permanent Pacer 2009
    Dx non-obs HCM CCF 2011
    CRT-D 2011
    Listed for H/T UAB 2011
    Dx Cardiac Sarcoidosis 2012
    Heart Transplant UAB 2012

  • #2
    Re: 6 Days Post Transplant - So far, So Good

    Hi Steve,
    Wow! Congratulations! So glad you got a new heart and that you're doing so well!

    As for being a poser . . . you're always going to be welcome here.

    Gordon
    Myectomy on Feb. 5, 2007.

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    • #3
      Re: 6 Days Post Transplant - So far, So Good

      So glad that you are doing so well. I echo Gordon's sentiments. You are always welcome here, and we hope that you continue to prosper with your new gift.
      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


      • #4
        Re: 6 Days Post Transplant - So far, So Good

        Ahh, Congratulations! Enjoy your new gift for many, many years! A special thank you to your donor family too.
        You'll always be part of apart of our family.
        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 . . .

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        • #5
          Re: 6 Days Post Transplant - So far, So Good

          Wow Steve, that's terriffic!! My condolences to the donor family but a huge congratulations to you and your family.
          Linda
          Onward and Upward !

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

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          • #6
            Re: 6 Days Post Transplant - So far, So Good

            I admire your attitude, and wish you great luck -- that heart you received got a great home.

            Comment


            • #7
              Re: 6 Days Post Transplant - So far, So Good

              So happy for you - and grateful to the donor family!

              Linda

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              • #8
                Re: 6 Days Post Transplant - So far, So Good

                What awesome news. I am so happy for you. A big shout out to organ donors.
                Midge

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

                Comment


                • #9
                  Re: 6 Days Post Transplant - So far, So Good

                  Steve, I'm so glad you got your new heart and are doing so well. The new meds schedules can be overwhelming, but remember to write EVERYTHING down. A calendar that has huge spaces to write in is on the Flylady site, or you can just use a notebook. Best of luck!
                  Reenie

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

                  Comment


                  • #10
                    Re: 6 Days Post Transplant - So far, So Good

                    congrats Steve! Wonderful news!
                    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.

                    Comment


                    • #11
                      Re: 6 Days Post Transplant - So far, So Good

                      Congratulations, Steve! That heart could not have found a better new home. Wishing you continued success on your journey.
                      "Some days you're the dog... some days you're the hydrant."

                      Comment


                      • #12
                        Re: 6 Days Post Transplant - So far, So Good

                        Thanks for all your well-wishes and suggestions. I'm feeling better everyday. UAB has made me a medication schedule and it has to be witnessed by someone for the first 5 weeks and I have to bring it to clinic with me! Very serious about not missing doses.

                        Y'all take care,

                        Steve
                        A/V Heart Block 2009
                        Permanent Pacer 2009
                        Dx non-obs HCM CCF 2011
                        CRT-D 2011
                        Listed for H/T UAB 2011
                        Dx Cardiac Sarcoidosis 2012
                        Heart Transplant UAB 2012

                        Comment


                        • #13
                          Re: 6 Days Post Transplant - So far, So Good

                          Yep, you will get used to it eventually, right now the dosages change often, that will get better the farther out you get.
                          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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