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back from seeing yet another doctor


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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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  • back from seeing yet another doctor

    Well it turns out i will just have to wait according to this doctor he says I'm not saying I'm hopping from one doctor to the other but i have now seen 5 doctors since i was diagnosed and he said there is no way to get me on that list, he said he was going to talk to Dr. Maron but he sounds like he has already made up his mind

    They did do another Echo and he says it looks the same as far as the ventricles being very stiff and i was to just do as I'm doing and come back in 2 months, he says go home and let it sink in, well it sunk in along time ago as to what was wrong with me and if he thinks that i was going from doctor to doctor to get on the list well that is just crazy I'm not that kind of person, well enough of my babbling here you all have a good day

    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
    Maybe I've missed this, but has the doctor(s) told you why they will not place you on the waiting list?

    From what I've read about your condition they wouldn't think twice.


    • #3

      I am sorry for these obstacles being in your way. I know what you are feeling is not very comforting and each day for you is moving another mountain. Please don't lose heart and hang in there . I am pulling for you all the time and I pray that your days are not always such a strain on you both emotionally and physically. Know that my thoughts and prayers are with you everyday.

      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


      • #4
        Reading about your experiences reminds me just how strong we can be when we have to be. You have been through such an ordeal. You are never far from my thoughts and I sincerely hope you get some good news soon.
        Prayers for you for strength and courage as you face each new day. Take care of yourself.

        It's not what you gather, but what you scatter that tells what kind of life you have lived.

        Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.


        • #5
          Hi Shirley,

          I think that some of these doctors are mental, no really I do.

          What does he think this is like.. winning the Publisher's Clearing House or a sweepstakes contest. What is the matter with this guy.

          Yeah, like you are scamming the doctors into giving you a - Heart Transplant - like that is something fun to do... to go under the knife and receive another person's heart to replace your own, then have to deal with the huge risks and anti-rejection drugs and such. Oh yeah, you're scamming Geez

          You are trying to save your own life and of course you deserve that. That doctor is unbelieveable.

          I somewhat know how you feel. I have stage 3 - 4 diastolic heart failure and because I have no insurance, the doctor said there is nothing he can do for me but give me a prescription for oxygen and Verapamil.

          But I think you should follow up and keep trying, even though I know it is frustrating.

          Hugs to You

          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.


          • #6
            Dear Shirley,

            I can't reply to much of anything as we are now blocked from accessing the internet through the university, hopefully temporarily. But, I just had to respond to this one by saying and I am praying.


            • #7
              Rhoda, I hope you get your internet access straightened out quickly - We miss you and like to know how things are going. Linda


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