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Challenging 6 Months - Now listed for H/T at UAB

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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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  • Challenging 6 Months - Now listed for H/T at UAB

    Hello Everyone,
    Sorry it's been so long since I have posted / contributed. During my last post in October, I was happily opining about how my Bi-V CRT-D device had made me much better, symptom-wise. Well those good times lasted about 2 weeks. Here's what happened next and where I'm going from here - I'll try to be brief. About 5 weeks after my Bi-V device was installed, I went to the hospital for unrelated minor "day" surgery. After 3 days in the hospital (unable to recover from the procedure because of heart problems), I went into cardio-genetic shock and was airlifted from Huntsville (HSV) Hospital to the University of Alabama in Birmingham's (UAB) heart-transplant (H/T) ICU. My cardiac output was so low when I left HSV for the 40 helicopter ride that a UAB team was assembled ready to give me an LVAD as a bridge to H/T when I arrived. Fortunately, the inotropes they started me on in HSV began to work and we took a "wait and see" approach and decided not to install the LVAD. Nine days in HT-ICU and 15 pounds lighter, my vitals became stable and my organs returned to normal function (except for my heart which was still too weak for comfort). Twelve more days were required at UAB to get rid of a darn fever I caught while I was there. So, 2 weeks ago, I was released from UAB with oral medications and an IV pump on my side with Milrinone, a drug that dilates your vessels taking the stress off my heart. Yesterday, I completed all the tests and evaluations for a heart transplant and am now listed at UAB (1B status) ready for the phone call at any moment. For someone that never thought my heart problems "were that bad" this has been a challenging turn of events for me and my family. I would love to hear from all of you that I have already gone through what I'm going through now or are listed and waiting like me!
    BTW: my oldest daughter got married last weekend - I was able to attend - what a wonderful blessing it was to be back at home and able to participate!

    All Glory is His!
    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: Challenging 6 Months - Now listed for H/T at UAB

    Steve - Thanks for the update - So glad you got to attend the wedding! Sorry things health-wise took a dive, but it sounds like you got an awesome team working for you!
    May your holiday be bright & may all your wishes come true.
    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


    • #3
      Re: Challenging 6 Months - Now listed for H/T at UAB

      Hi Steve,
      I'm sorry to hear that things took such a severe turn -- but I'm glad you were able to get such attention in time!

      I don't have any personal experience with the transplant process; I'm sure it's trying. We're with you.

      Gordon
      Myectomy on Feb. 5, 2007.

      Comment


      • #4
        Re: Challenging 6 Months - Now listed for H/T at UAB

        Steve, I went through something similar this year. I was living in Italy and on September 21st came to see my cardiologist here in the States for a check up. At the appointment I was told I was not fit to fly back and that I required a transplant. Three days later I found myself on the 1B list with IV Milrinone. My husband and three kids were in Italy and I was living in a hotel in the DC metro area. In mid October things took a turn for the worse and I moved from the hotel into the CCU at the hospital where I stayed on the 1A list awaiting transplant. November 23rd, after finding a job here in this area and closing down our home (and lives) in Italy, my family arrived stateside. I received a good offer on November 29th and am now three weeks post transplant. Yesterday after my weekly biopsy appointment, my husband and I were walking to the car and suddenly he stopped and just stared at me. Finally, with tears in his eyes, he said, "do you realize you just walked all the way to the car at my side and didn't stop once to catch your breath and recover your heart rate?" We were across the parking garage and not in my customary handicapped spot. I have counted my blessings every single minute of the last three weeks. Having so recently gone through the process, I am more than happy to share insights or just be available to vent to. Private message me if you'd like.

        Lynn H.

        p.s. I am the only HCM patient to transplant at our center in the past five years. Yesterday, my doctor told me he and a colleague from another state were wanting to study the HCM community to gain a better understanding on how to help us before it's too late. In so many cases, by the time an HCM patient gets to the transplant team, it's too late to help them because of the damage to the lungs and other organs. If it weren't for my cardiologist making the call when he did, I wouldn't have been eligible for transplant due to pulmonary hypertension.

        Comment


        • #5
          Re: Challenging 6 Months - Now listed for H/T at UAB

          Hello Lynn,

          Wow, what an encouraging and uplifting recount of your journey - thanks for sharing it with me! I bet it was tough going 1A and having to stay in the hospital without your entire family state-side. I'm so happy everything is going well with you and I plan to communicate directly via private messaging. I too have been very fortunate to be "in the right place at the right time" with the medical team making some expert decisions and actions - I'm writing today because of the excellent work of the doctors at HH and UAB and the Lord's graceful work in me!

          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


          • #6
            Re: Challenging 6 Months - Now listed for H/T at UAB

            Steve. Prayers for you as you face the unseure future.

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

            Comment


            • #7
              Re: Challenging 6 Months - Now listed for H/T at UAB

              Glad to hear they did not go with the LVAD - data is not favorable for HCM'ers to have much success on them. Stay well.. enjoy the holidays!

              Best wishes,
              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)

              Comment


              • #8
                Re: Challenging 6 Months - Now listed for H/T at UAB

                Lynn,
                Glad to hear things are going so well!

                Gordon
                Myectomy on Feb. 5, 2007.

                Comment


                • #9
                  Re: Challenging 6 Months - Now listed for H/T at UAB

                  Steve - I'm glad you were able to be with your daughter for her wedding - hoping the transplant comes quickly for you.

                  Lynn, so glad to hear your good news!

                  Linda

                  Comment


                  • #10
                    Re: Challenging 6 Months - Now listed for H/T at UAB

                    Steve, I am 7 years + out from heart transplant. It changed my life. I can keep up with my friends and family on walks and trips. I am so grateful for this gift of life. I am excited you have been listed and hope your heart comes soon.

                    Lynn, I am excited for you it is a great Christmas gift. Congratulations.
                    Midge

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

                    Comment


                    • #11
                      Re: Challenging 6 Months - Now listed for H/T at UAB

                      Good Morning Midge and Lynn,

                      Thanks for your replies - it's great to hear from two healthy and happy heart-transplant recipients. Anything else you can give me a "heads up" on like - reactions to medications, dosage changes to prevent rejection, physical, emotional challenges would be greatly appreciated. Also, any challenges with friends and family?

                      Merry Christmas!

                      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


                      • #12
                        Re: Challenging 6 Months - Now listed for H/T at UAB

                        I had a heart transplant almost three years ago and am now happy and healthy. The entirety of my story from diagnosis to today can be found here http://www.emilysatrium.org/ . I went downhill fairly quickly too (about a year and a half diagnosis to transplant) and although the speed is merciful because you aren't waiting for years and years it is also terrifying. I hope your journey works out as well as mine has. I found Milrinone to be a godsend that allowed me to feel reasonably healthy while I waited. I waited only a little while on the list and I wish you the same luck (it was snow storm season while I was listed). The hardest part of the entire process for me was the adjustment to the mads because the surgical discomfort I hardly remember. I had some difficulties balancing the dosages the first six months to reduce nausea but now it is all nicely worked out and I am as normal as I will ever be.
                        Best of luck,
                        Emily
                        Love to live. Love to be a kid.

                        Comment


                        • #13
                          Re: Challenging 6 Months - Now listed for H/T at UAB

                          EmilyOrange,

                          Thanks so much for your post - you are the same age as my daughter Anna who began her quest for a molecular biology degree at Auburn University this fall. I'm so glad that you are happy, healthy and are raising the awareness of HCM through your website and journey. Your perspective on how fast you went downhill and how one should view this as a blessing (not a curse) resonated with me. I've been trying to "reason with myself" why I shouldn't be here yet or why I should attempt to "make it a little longer" with my own heart. I feel so good on the Milirinone that I begin to think "maybe my heart's not so bad after all". The doctors know better for sure.

                          Best wishes for a great spring semester - I plan to check your website from time-to-time!

                          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

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