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Starting the transplant work-up

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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • Starting the transplant work-up

    Ok I went yesterday to see the transplant team well i saw one of the doctors and he said he has talked to my cardio doctor in Richmond and also feels i need the transplant, so Monday i will have a metabolic stress test which he says measures the oxygen in my body or rather it tells them how much my body is using oxygen and he is sending me to a doctor that deals with Chronic Bronchitis to try to avoid a lung transplant if at all possible, he was very concerned about all the swelling i'm having, finally a doctor that says i have more swelling then i do fat he knows what i looked like 2 years ago, he says he remembers me from 5 years ago you see he is my husbands cardio doc and he did a procedure on him then for his A-Fib

    he says i think i have treated your entire family and i said not my daughter and i don't want you to treat her if you know what i mean, her heart seems to be healthy for now

    well off to take my meds for the night, and i will keep everyone posted and thank you in advance and i hope everyone is ready for Christmas or the holidays

    Shirley
    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

  • #2
    Re: Starting the transplant work-up

    Good Luck Shirley! As someone that is on the transplant list be ready for lots of feelings you don't expect and the wait is enough to kill you. I will keep us all in my thoughts and prayers and know that God will provide enough hearts for all that need them.

    Beverly

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    • #3
      Re: Starting the transplant work-up

      You are both in my thoughts and prayers.

      Reenie
      Reenie

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

      Comment


      • #4
        Re: Starting the transplant work-up

        Hi Shirley,

        I think about you everyday and I pray everyday that you will get a new heart very soon. I am so sorry to hear about your health problems.
        I hope the doctors can clear up the chronic bronchitis and help you in every way possible.

        Please keep us posted. I sincerely hope you have a wonderful Holiday Season.

        ((((((((Shirley)))))))))))

        Eileen

        ----------


        Hi Beverly,

        I will now pray everyday that you recieve a new heart and I will hold positive thoughts for you as well. I wish you Happy Holdiays.

        I wish you all the best.

        (((((((((Beverly))))))))))

        Eileen
        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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        • #5
          Re: Starting the transplant work-up

          Shirley and Beverly, you are both in my thoughts and prayers daily. May it only be a short time for you both to wait for your new hearts.

          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


          • #6
            Re: Starting the transplant work-up

            Shirley and Bevery,

            You are in my thoughts and prayers...take care and hang in there
            \"It is not length of life, but depth of life.\"

            Ralph Waldo Emerson

            Comment


            • #7
              Re: Starting the transplant work-up

              Shirely,
              I'm sure your tests will go well. I hope you are first on the list and that you will get good news soon.
              Nancy

              Comment


              • #8
                Re: Starting the transplant work-up

                Shirley,

                Hi, I am a "newbie" so you don't yet know me.

                My Dad had a transplant the Fri after Thanksgiving, and so far is doing great and with more energy than he has had in years. What a blessing for him and for us. He will now outwalk and outrun me!

                Hang in there, expect ups and downs as you wait, and prayers for a good match soon.

                Heather
                Heather V.

                Comment


                • #9
                  Re: Starting the transplant work-up

                  Shirley and Beverly and anyone else out there waiting for a heart,

                  I admire your courage and pray that you find the best hearts around!

                  Rhoda

                  Comment


                  • #10
                    Re: Starting the transplant work-up

                    I would like to thank everyone for your kind words and beverly i will keep you in my thoughts and prayer, and yes it is a little scary thinking about the surgery, but i figure what have i got to lose at this point, something has to change i'm just existing and that is just not me, my husband says i use to be borderline hyper before this heart kicked my butt, i hope everyone had a great weekend

                    Shirley
                    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

                    Comment


                    • #11
                      Re: Starting the transplant work-up

                      I wish you the very best. You are a very brave person. I will keep you in my thoughts and KNOW that everything will work out.

                      P.S. Let me know what it feels like to have a strong healthy heart!
                      I cannot fear death, because when dead, death does not exist. Love is the reason for being, it can never be taken away nor lost, so hold on I will, and in death I will not part, but rejoice for the time I’ve had with you.

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                      • #12
                        Re: Starting the transplant work-up

                        Shirley, man I was back up for testing and just got around to checking the board. I still am going to call you. Hang in there. As Beverly said the wait is the hardest. It will be nine months since my transplant here in 4 more days. Does not seem possible. Even on a tired day now it is not as bad as pre transplant. Tell your husband you will be borderline hyper again. Mine is ready to sit on me half of the time. My problem now is I feel good and then I over do. It takes a year they say. You will enjoy walking and riding bike etc. I will keep you in my prayers and you too Beverly.
                        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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