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PET scan

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cynthiaG
cynthiaG
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    purple_ness1
    Barely Heart

  • purple_ness1
    replied
    Re: PET scan

    I never had a pet scan either , i also had a ICD and didnt have either of thoses test either.

    Leave a comment:

  • Michael-medic
    Atria

  • Michael-medic
    replied
    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

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  • EmilyOrange
    Atria

  • EmilyOrange
    replied
    Re: PET scan

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

    Leave a comment:

  • shirleymahoney
    Brave Heart

  • shirleymahoney
    replied
    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

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  • Linda
    Super Moderator

  • Linda
    replied
    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

    Leave a comment:

  • shirleymahoney
    Brave Heart

  • shirleymahoney
    replied
    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

    Leave a comment:

  • Midge Rollins
    Moderator

  • Midge Rollins
    replied
    Re: PET scan

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

    Leave a comment:

  • cynthiaG
    Member of 1000 Post Club!

  • cynthiaG
    started a topic PET scan

    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

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