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sickora
sickora
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  • Waiting...

    I've been meaning to post here and now I've got the motivation. If anyone remembers, I posted a bit around 2.5 years ago when I was first put on the transplant list. Not much to talk about in the space between then and now. I was admitted to the Cleveland Clinic last Monday to be put on Milrinone and wait at the hospital for a transplant. Tonight is the last night I'll be status 1A, as tomorrow the swan from my neck will be removed and I'll move down to status 1B.

    The nurse came in a little while ago to tell me not to get to excited, but there is a possible heart. Clinic staff were on their way to examine it right now.

    So now I'm waiting and I don't think I have much chance of falling back asleep. I know nothing is for certain yet, and I shouldn't get my hopes up, but it's hard to listen to that advice. I'll to get some answer up either way to let you all know the outcome.

    I know I'm more of a lurker than anything else here but reading the boards always gives me comfort and hope. Thanks.
    Cardiac Arrest due to HCM in 1989
    8 ICDS
    Heart Transplant 9/8/09

  • #2
    Re: Waiting...

    I hope everything goes ok, sometimes waiting is the hardest part.

    Comment


    • #3
      Re: Waiting...

      We will be praying for you and hoping that this is your new 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


      • #4
        Re: Waiting...

        I too am hopeful that your new heart has become available. Please let us know. Don't loose hope!!
        L
        Onward and Upward !

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

        Comment


        • #5
          Re: Waiting...

          Oh, how I hope that this heart is 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


          • #6
            Re: Waiting...

            I hope your waiting is over. Let us know when you can.

            Comment


            • #7
              Re: Waiting...

              So far everything is good. I'm scheduled to go in for the transplant at 1:45pm. The doctors warned me that nothing is for certain yet though, that there is still a chance the donor heart will be rejected. I hope it's not. I've been told that the operation is going to be tricky since I have pads sewn on my heart from my first ICD (back in 1989). I'm hoping everything goes well and will try to get a message out sometime after.
              Cardiac Arrest due to HCM in 1989
              8 ICDS
              Heart Transplant 9/8/09

              Comment


              • #8
                Re: Waiting...

                Sending much hope and many prayers for you ..
                Pam
                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

                Comment


                • #9
                  Re: Waiting...

                  We'll be thinking of you.

                  Gordon
                  Myectomy on Feb. 5, 2007.

                  Comment


                  • #10
                    Re: Waiting...

                    Oh - I hope this is it! Gool Luck and know we are all thinking of you!
                    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


                    • #11
                      Re: Waiting...

                      Oh, I wish you all the best with this, and praying for you too.
                      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.

                      Comment


                      • #12
                        Re: Waiting...

                        Please have a family or friend update us. I can only imagine what you are feeling, but my prayers are with you and your loved ones.
                        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


                        • #13
                          Re: Waiting...

                          My second birthday is 9/8/09! Had the transplant Tuesday. I was just transferred out of the ICU and into a regular room last night. So far everything is going well. I'll have my first biopsy this Tuesday. I know it's far too early to be assuming this is the way things are going to be, but so far so good! Dr. Gonzalez here at the Cleveland Clinic did the actual heart transplant. I know it was really long because they had to do the tranplant itself, take extra precaution because my heart has patches sewn on it from my first ICD and then remove the newest ICD. It was pretty quick for me though, just going to sleep and then waking up.

                          I'll keep posting updates as they warrent, thanks to everyone who sent a message of support.
                          Cardiac Arrest due to HCM in 1989
                          8 ICDS
                          Heart Transplant 9/8/09

                          Comment


                          • #14
                            Re: Waiting...

                            I missed your initial posting of this thread but am glad to see it now. So glad it went well and things seem to be going ok. Wishing you the best.
                            Keep us updated.
                            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.

                            Comment


                            • #15
                              Re: Waiting...

                              Wow. Four days and out of the ICU and on the internet! Things are going great!

                              Don't sweat the first biopsy. It is very common for some white blood cells to be clustering around your new heart. They are busily cleaning up from the trauma that your heart went through. My daughter's first biopsy was a zero, but then the second one was a 1 because of this. The doctors were not at all worried and felt that the induction meds were doing their job. After a second 1 she's been a zero ever since, and we're going on eight months.

                              Congratulations again. This sure beats waiting, doesn't it?

                              Comment

                              Today's Birthdays

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