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cynthiaG Find out more about cynthiaG
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  • PET scan

    Have any of you who went through pre testing before getting on the transplant list had a PET scan? just wondering if this is typically a test included in various other tests
    \"It is not length of life, but depth of life.\"

    Ralph Waldo Emerson

  • #2
    Re: PET scan

    I did not. But a lot can change in 9 years since my evaluation. Are you having one?
    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: PET scan

      I didn't have a pet either on my pre-testing, maybe it is a new test for the pre-testing good luck

      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

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      • #4
        Re: PET scan

        Cynthia - If I remember correctly, you do have an ICD - so the MRI is contraindicated. The PET scan is an alternative.

        Linda

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        • #5
          Re: PET scan

          I have an ICD also and have had one since 2003 there was never a talk about either test but I may not have gone that far before they decided to wait, it has been 4 years ago since I had the workup done so I have a feeling they are going to want to do the testing again soon being my ef has gone down, so I will let you know

          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

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          • #6
            Re: PET scan

            I've had a pet scan, but it was not part of my work-up for listing evaluation.
            Love to live. Love to be a kid.

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            • #7
              Re: PET scan

              I had a Cardiac PET last August at Brigham and Womens. I am a patient of Dr. Maron at Tufts and he sent me over to B&W for the test. I had a myectomy and mitral valve repair at Tufts and recovered quickly from that procedure. But as I was gaining more strength and increasing my activity I started to develope chest pain and sob again. I was feeling as if I never had the surgery. We started repeating some of the old tests. (echo, stress test, ). After three trips back to Boston in six weeks, we were all frustrated. We already knew that I had a bridge of my LAD, which is usually a benign problem. Dr. Maron wanted me to have the PET to determine if that bridging was actually causing some ischemia. The PET scan would show how the heart muscle was functioning. I also had a VO2 test performed that same trip. I almost did not go up for the tests because everything was coming back within normal limits and I figured it would be a waste of time. But I always trusted Dr. Maron, so I agreed.
              When Dr. Maron called me two weeks later (on my birthday), he gave me some suprising news. I had severe Coronary Microvascular Disfunction that was global and effecting all areas of my heart. He was so glad I'd agreed to come up that last trip and have the PET scan. He was so suprised by the results. I took another trip up and we had a conversation about transplants. By no means am I in need of a transplant at this time. He just wanted me to understand that with these recent test result it is usually an indicator to future heart failure. The disease pattern may stay like this for a very long time or I can decline.
              So I changed some things that I have control over. My diet and weight. I am eating better and lost 30 pounds. For the first time in ages when someone asks me how I'm feeling, I can answer-Great. If I forget my meds or exert myself too much with things like yard work I experience some angina. It will go away with rest and then back to work I go.
              I posted once about Coronary Microvascular Disfunction, but nobody replied. When I did searches, I found that CMD alone is different than HCM with CMD.
              The PET will help the physicians get a clear understanding of how well your heart is functioning and metabolizing oxygen.
              Did Tufts get a Cardiac PET Scanner or do you also need to go to B&W? The staff at B&W were wonderful. The test is similiar to any CT scan, except you are given an infusion to stress the heart. I had the worst chest pain of my life and I had to stay on the table for 30 minutes before the pain subsided. But it was worth it in the end. We have a better understanding of my illness and adjusted my meds to better treat my symptoms.
              I have been reading your posts and can tell you are scared and frustrated. Hang in there and let us know how you are doing.
              I wish you only the best.
              Michael
              Dx with HCM November 2009
              Myectomy and Mitral Valve Repair @Tuft's March 2010

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              • #8
                Re: PET scan

                I never had a pet scan either , i also had a ICD and didnt have either of thoses test either.
                Margi*
                http://margi-inskeep.blogspot.com
                Forever Young

                I was diagnosedwith HCM at 6.
                Went into Atrial fibrillation so had a ICD put in at 16
                Went into Heart failure at 17
                Got a heart transplant at 21(2009)

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