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cynthiaG Find out more about cynthiaG
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  • post transplant-not heart related

    Long story short...had blood in my urine just before Christmas. Had cystoscopy and found small tumor in bladder. Was told it was a very low grade cancer. My urologist at Tufts is great....tells it like it is with a caring bedside manner. He said if God came down and said to me that I had to choose a type of cancer,then this would be the one to choose..that made me feel better..have to have a "wash" of my bladder once a week for 6 weeks. It gets rid of cancer cells lurking in there. Needless to say I have another"journey" to deal with (like my transplant one wasn't enough!). ..have any of you had any complications possibly due to the immunosuppressants we have to take? It could be a possibility of the cause.
    \"It is not length of life, but depth of life.\"

    Ralph Waldo Emerson

  • #2
    Re: post transplant-not heart related

    Cynthia, it is very possible it is a side effect of the immune suppressants. I have had multiple skin cancers removed from 6 mos post transplant and still having issues with it. Fortunately so far no melanoma, but Ia a concern. Aim glad they found this early and can be treated with the wash. I figure as long as our hearts remain healthy we can deal with the other issues. Keep me posted and I will send up a prayer for you.
    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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    • #3
      Re: post transplant-not heart related

      Cynthia- Sorry to here this news. You've got spunk & once this is dealt with, I hope you can enjoy life.
      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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      • #4
        Re: post transplant-not heart related

        Cynthia,
        I'm sorry to hear you've got this new challenge. We're here to help if you need us.

        Gordon
        Myectomy on Feb. 5, 2007.

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        • #5
          Re: post transplant-not heart related

          You are all SO supportive! This board means a lot to me..I'll keep in touch
          \"It is not length of life, but depth of life.\"

          Ralph Waldo Emerson

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          • #6
            Re: post transplant-not heart related

            ...and Midge..wish you the very best...I'll say some prayers for you too! These immuno suppressants can be nasty.
            \"It is not length of life, but depth of life.\"

            Ralph Waldo Emerson

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            • #7
              Re: post transplant-not heart related

              Cynthia - I'm glad to hear from you. Sorry you are going thru this new set of issues, but it sounds like you are moving forward with a great attitude and optimism. Glad your doc is so supportive and caring.

              Wishing you the best - Linda

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              • #8
                Re: post transplant-not heart related

                Hey Cynthia, you know how I feel about this, you got the strengh,courage,and attitude to overcome anything. You're a special person with God and a great medical team looking over your shoulder(and a great hubby).

                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

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                • #9
                  Re: post transplant-not heart related

                  Hang in there Cynthia
                  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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                  • #10
                    Re: post transplant-not heart related

                    Keep us posted Cynthia! Thinking of you!
                    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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                    • #11
                      Re: post transplant-not heart related

                      Crossing our fingers that this is just a minor bump and that all goes back to normal soon.
                      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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                      Today's Birthdays

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