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RE: Cynthia is waitng

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maztbo grew up in boston,but live on the cape now with my wife and three teenagers Find out more about maztbo
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  • RE: Cynthia is waitng

    Haven't done much posting lately, but I've been in active communication with a few members here that are in the same situation as me,(misery loves company) and we've be able to give each other support and shared observations as we deal with this aspect of HCM and waiting for a transplant. I've talked to our fellow HCMA member Cynthia today and asked her if it was alright to post her condition on the board since she doesn't have her PC in the hospital, and she said it was alright.
    She went in for her PET scan at Tufts a week ago friday,where she passed out and collapsed on the street outside the front door of the hospital,she was admitted and is now residing up in the Cardiomyophy Center.I don't know if she got the Pet scan, but that's probably a moot point, since she told me they've placed her on the waiting list as a status 1a (most acute status), so she probably won't be going home til she gets a new heart.Hopefully she won't have to wait too long and her blood type works to an advantage for her.I wanted to post this so we can keep her in our thoughts and prayers as she goes through this trying time in her life.

    John F.
    had HCM since birth
    'enlarged heart' identified in 96'
    HOCM dx in 7/08
    Myectomy 8/09
    extended Myectomy 5/10
    'End stage' HCM dx 8/10
    CRT-D implanted 9/10
    evaluated for Transplant 11/10
    Listed for transplant 6/11

  • #2
    Re: Cynthia is waitng

    John - thank you for the update - if you have the opportunity, please give her our best and let her know she has many praying for her - Linda

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    • #3
      Re: Cynthia is waitng

      Yes, thanks for letting us know -- and let her know that we're all rooting for her!

      Gordon
      Myectomy on Feb. 5, 2007.

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      • #4
        Re: Cynthia is waitng

        I'm glad she on the list as 1A. Thanks for the update and I'm wishing her well.
        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: Cynthia is waitng

          I've been wondering! Tell her I am thinking of her and hope to hear good news soon!!
          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.

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          • #6
            Re: Cynthia is waitng

            Well, I guess if you are going to have some sort of event, outside the hospital is the best place to have it. I'm glad to hear that Cynthia is now a 1A and I hope that her wait is not too long. Please let us know how things go for both of you.
            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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            • #7
              Re: Cynthia is waitng

              Yes, John. Thank you so much for posting and keeping us up to date. Here's hoping that Cynthia gets a new heart soon and is back enjoying her life ASAP.
              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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              • #8
                Re: Cynthia is waitng

                Thanks, so much for updating us. I am hoping and praying that her heart comes quickly.
                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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                • #9
                  Re: Cynthia is waitng

                  Please let her know we are all rooting for her.
                  Reenie

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

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                  • #10
                    Re: Cynthia is waitng

                    John thank you for the update on Cynthia. I have been following her posts on this forum for sometime now. I had my myectomy at Tufts so I know exactly where she was passed out. I hope everything works out for her and she gets a transplant soon. Please let her know we are all rooting for her.
                    Diagnosed HCM 1998
                    Myectomy June 2010
                    50 mg Toprol XL

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                    • #11
                      Re: Cynthia is waitng

                      Thank you John for letting us know.

                      I will pray for Cynthia every day. I'm very sorry to hear her condition worsened so quickly.
                      The Lord is close by Cynthia's side.
                      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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                      • #12
                        Re: Cynthia is waitng

                        Thanks for the update, John. We're headed back to Tufts in January. Hopefully she's home and doing well by then. I'll call you soon.
                        "We come into the world and take our chances, fate is just the weight of circumstances - that's the way the lady luck dances...roll the bones." - Rush

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                        • #13
                          Re: Cynthia is waitng

                          Will definitely be praying for Cynthia! Thanks for the update.

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                          • #14
                            Cynthia is in my prayers and hoping her new heart comes soon Thank You John for the update
                            Diagnosed 2003
                            Myectomy 2-23-2004
                            Husband: Ken
                            Son: John diagnosed 2004
                            Daughter: Janet (free of HCM)

                            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

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                            • #15
                              Re: Cynthia is waitng

                              Wow, prayers for Cynthia! Hopefully, she will be out enjoying life soon. I pretty much passed out in that area too after my V02 max test. My bp crashed to 67/? every med student just had to come in and talk to the person without a radial pulse!

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