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still trying to inhale and exhale live each day

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  • still trying to inhale and exhale live each day

    Hi everyone I went To brigham and woman's hospital today talked to my cardiologist and he is really leaning for the transplant for me. He is giving some good points that it will give me a better quality of life and I can feel my heart is slowing me down. My oxygen on the stress test was at an exact point of 8.2 percentage which is very low and bad. my ejection fraction is about 40 to 45 percent. I don't want to be put on the list unless it's something that really must be done. But I have had to leave work early four times and I can feel it that I am not well. The doctor would rather have it that I not work at all in a while But I am not a quitter. I told him that I am trying to set up at an appointment with New England Medical center and he said that was fine but he still would like me to go into the hospital in late june for some testing. I guess when they decide if you go on the list they do all the tests of everything else to make sure there are no other health issues and then you see a social worker and a psychologist and they go from there and make the decision.
    I believe with This whole issue I am a little bit anxious and on edge. Of course that's normal though. I just need all the support. Has anyone here gone through what I am going through right now? Thanks for listening and God bless you all.

    Sincerely
    Kimberly K. Plaster

  • #2
    Re: still trying to inhale and exhale live each day

    Hi, Kimberly,

    We will certainly be here to support you through this time of decision and whatever lies ahead. I looked at your previous posts to see whether you had seen an HCM specialist or not and do not see that you have. Have you? This is not in criticism of your current doctors and you should not think of it as your rejecting them if you go to an HCM specialist. But, they may be able to see ways to help you that are unique to people with HCM. So, seeing a specialist in HCM might help and could not hurt.

    I will pray for wisdom for you in this situation.

    Rhoda

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    • #3
      Re: still trying to inhale and exhale live each day

      Kimberly, look for posts from Midge. She recently had a transplant and you can gain a lot from her. Good luck.

      Reenie
      Reenie

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

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      • #4
        Re: still trying to inhale and exhale live each day

        Hi Kimberly,

        If you want my advice (knowing full well what free advice is worth), I would 1) get my name on the list for a transplant, 2) have all the testing done, 3) go see an HCM specialist at the NEMC for a second opinion and possible alternate treatment.

        Steps 2 and 3 are not necessarily in order.

        If it turns out that some other approach is selected, - after appropriate testing and due deliberation, - your name can always be removed from the list. On the other hand, if a transplant is needed, it would be best not to delay getting your name listed.

        You’re much too important a person to be lost to missed opportunity – not only to your family and friends, but to us too.
        Burt

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        • #5
          Re: still trying to inhale and exhale live each day

          Hi Kimberly,

          I have also gone through what you are going through. I am in the end-stage of this disease. My ejection fraction is roughly 20-30%, and I have probably been in heart failure for 90% of the past year. Many visits to the ER and stays to drain the fluids. I was put on the transplant list in March of last year, after much testing (it took me about 6 months just to get on the list). I still work too but often have bad days where it's impossible to get up for work or I have to leave early because I'm just exhausted. Luckily I have a desk job, and my co-workers and management are great with my condition. It also helps them to understand if you have a cardiac arrest in front of them , but I wouldn't suggest going that far.

          So I know that soon I will have a new heart with a great quality of life and I can't wait. And as far as transplants go nowadays, the procedures are very very successful with great improvements to avoiding rejection.

          Take care of yourself and let me konw if you have any questions.

          Matt

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          • #6
            Re: still trying to inhale and exhale live each day

            Hi Matt. I've been thinking about you. Thanks for the update.

            Reenie
            Reenie

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

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            • #7
              Re: still trying to inhale and exhale live each day

              Kimberly and Matt, Best wishes and prayers for both of you. Linda

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              • #8
                Re: still trying to inhale and exhale live each day

                Kimberly,

                My suggestion is to do exactly what Burt recommended. Seeing an HCM specialist at Tufts New England Medical Center would be my first step. They are wonderful there. I wish you and Matt the very best and you will be in my prayers...

                Cynthia
                \"It is not length of life, but depth of life.\"

                Ralph Waldo Emerson

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                • #9
                  Re: still trying to inhale and exhale live each day

                  I would suggest the following:
                  1. a 2nd opinion is a great idea, and NEMC is a wonderful place.
                  2. Ask about other options such as Bi-V pacing.
                  3. If Transplant is on the horizon, start thinking about it, but do not focus on it too much. You have a long road ahead.
                  4. WE ARE HERE FOR YOU ANYTIME!!!!!!!

                  Lisa
                  Knowledge is power ... Stay informed!
                  YOU can make a difference - all you have to do is try!

                  Dx age 12 current age 46 and counting!
                  lost: 5 family members to HCM (SCD, Stroke, CHF)
                  Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                  Therapy - ICD (implanted 97, 01, 04 and 11, medication
                  Currently not obstructed
                  Complications - unnecessary pacemaker and stroke (unrelated to each other)

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