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macbeth
macbeth
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  • Listed for Transplant

    Well, it finally happened. My son Mike was listed for transplant on 24 September.

    He's been hospitalized 11 times in the last 21 months. Every time it was the same sequence – atrial arrhythmia, followed by a trip to the ER, drugs or cardioversion to stop the arrhythmia, and then heavy diuresis to stop the pulmonary edema caused by the bulk fluid (2 -3 liters) given to him in the ER.

    This last time was the worst – the cardiologists could not get the fluid off his lungs. We had him transferred from a hospital in southeast Michigan to the Cleveland Clinic. At CCF they concluded his heart had degraded to the point where a transplant was necessary. His EF has only been about 20 % for the last year. He has so much scarring that he has no tolerance for arrhythmias of any kind.

    He was listed as a 1A on the national list for one week (he was in the heart failure ICU and had a Swann catheter.) He has since been dropped to a 1B. He will stay in the hospital in Cleveland until they find him a heart. His blood type is O+, so it may be months before the transplant.

    We've known this would happen since 1991, but it hasn't made things any easier. No matter how much you prepare yourself for these things, when they actually happen, it still hurts like ****. I have a daughter who has identically the same condition. We believe she will follow a similar course in a few years.

    Thank God for the Cleveland Clinic. The doctors in SE Michigan decided his case was too complex for them, and sent him to CCF. The doctors and the nurses are tremendous, and the hospital deserves its reputation for being the one of the best.

    He's only 24, and has really suffered from this. I hope his life after the transplant makes up for all he's endured. Only time will tell – it's in God's hands now.

  • #2
    Re: Listed for Transplant

    I'm sorry Mike has had such a tough time of it, but it looks like he's getting the best care possible. I hope a new heart is found soon so he may live long & fulfilling life. Keep us posted & we're here for you anything you need us to be.
    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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    • #3
      Re: Listed for Transplant

      Our thoughts and prayers are with you and your entire family. Please let us know if there is anything you need from our community... a friend to talk to ... a good joke to distract you... or a place to vent... we are here for you all!
      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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      • #4
        Re: Listed for Transplant

        Oh, I do so hope that a heart becomes available for Mike quickly. Yes, you are in a great place and will receive nothing short of the best care possible. Thanks for keeping us updated and I will look forward to the post that his new heart has arrived.
        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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        • #5
          Re: Listed for Transplant

          We will all keep Mike and your family in our thoughts and prayers.
          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.

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          • #6
            Re: Listed for Transplant

            We are less than a year ahead of you on this journey, as our daughter was listed in December of last year and transplanted January 31. If our experience is any help you are going through the worst of it now. Once the surgery takes place you may have some scary moments but you will know that steps are being taken to make your son better. Now steps are being taken to slow the rate at which he is getting worse. Watching him get better is amazing. The waiting is absolutely crazy-making. I don't know what to say except that you have to endure it, it's best done as a team, and it is going to get better. If you haven't already done so, you might like to read our blog about our daughter's experience at www.emilysatrium.org. I suggest you skip to the bottom, click on the "older posts" link a few times, and start from the beginning.

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            • #7
              Re: Listed for Transplant

              Our prayers for Mike and your entire family - We'll all be with you on this journey -

              Linda

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              • #8
                Re: Listed for Transplant

                Macbeth,
                I am so sorry for the pain and anguish that you are experiencing right now. You all have been through so very much already, and you know you have a long road ahead of you. May you and your family be upheld by the strength and prayers that others are offering you. May you realize you are not alone in this journey. I, too, will be praying for Mike and the rest of your family and will lend you my hope and strength as we await updates.
                One day at a time, one hour at a time.
                Grateful that he is receiving great medical care at CCF,
                Theresa
                Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

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                • #9
                  Re: Listed for Transplant

                  I will agree with Bob you are in the worst part of the transplant journey. Waiting. I will hope and pray his heart comes soon. I am 5 1/2 years post transplant and am doing well. It is worth the wait. Hang in there and if you need anything please know we are here for you.
                  Midge

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

                  Comment


                  • #10
                    Re: Listed for Transplant

                    Hey

                    sorry to here your haveing such a hard time with you son at the momment i hope they can fine a heart soon .
                    having my transplant was one of the best things that happened to me , befor my transplant i could bearly walk to my letter box and a few days ago i walked up the mt, i can do so much more i ever dream off things i had never done befor.
                    the waiting and recovering was the hardest part but once your over that , its amazing

                    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


                    • #11
                      Re: Listed for Transplant

                      I am so sorry for the news, but will keep you all in my thoughts and prayers. I hope you can continue the updates and we wish you all strength for your journey.
                      Shelly
                      *****
                      Choose to laugh instead of cry...it's prettier!
                      Remember...
                      You always have the option to change.

                      Diagnosed 1994 with no family history
                      AICD 10/06
                      Mayo Clinic Myectomy 11/07 Joe Dearani

                      Comment


                      • #12
                        Re: Listed for Transplant

                        Macbeth,

                        Like everyone who posted, I too am sorry to hear of Mike's need for a heart. CCF is the best place to be. And you're right, Mike is in God's hands, please try to keep hope and faith.

                        I hope and pray for a new heart for Mike very soon.
                        49 yrs. old
                        Diagnosed at 31.
                        Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                        First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                        Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                        Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                        My brother passed away suddenly at 34 yrs old from HCM.
                        2 teenage children, ages 17 and 15.

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                        • #13
                          Re: Listed for Transplant

                          I'll add my voice to the others'. I'm sorry to hear that Mike is having such trouble, but am glad that he has excellent care. Here's hoping a heart becomes available quickly.

                          Gordon
                          Myectomy on Feb. 5, 2007.

                          Comment


                          • #14
                            Re: Listed for Transplant

                            Macbeth,

                            Thinking of you and your son during this time. Here's hoping for a short wait and quick road to recovery for your son!
                            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


                            • #15
                              Re: Listed for Transplant

                              Just adding my support and prayers along with the many others on this board, spoken and unspoken, for your son Mike...
                              Myectomy and mitral valve repair, April 2007, St. Luke's Hospital (NYC)

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