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The Transplant conversation has become serious

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Michael-medic I've been with my domestic partner for 12 years. Ed is a Resident in Plastic Surgery. Find out more about Michael-medic
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  • #1

    The Transplant conversation has become serious

    Hello,
    Last week I had my fourth VO2 test. My latest number is 16, and Dr Maron has advised me that it's time to start searching for a heart transplant surgeon. I knew this day was coming but I really thought I had a few more years. I was on disability for 6 months and never tnought I was going back to work as a paramedic, but I did.
    It's now getting too difficult and not sure how much longer I can last.
    Dr. Maron was surprised I was still working considering my symptoms and test results.
    I have a consult with Newark Beth Israel on Oct 7th. But I am leaning towards Columbia. I have a call out to them and waiting for a date.
    It was great to see Dr.Maron close to my home in NJ. No need to drive 3-4 hrs to Boston any longer. He is at Morristown Medic Center just 30 minutes away once a month. I've taken many patients there over the years and my nephews were born at MMC. Gorgeous facility and staff to match. If you live in the NJ NY PA area please consider Morristown.
    Dx with HCM November 2009
    Myectomy and Mitral Valve Repair @Tuft's March 2010
    Tags: None
  • #2
    Re: The Transplant conversation has become serious

    Hi Michael,
    I'm sorry to hear that things are that much worse, but I know they've been getting worse for quite a while.

    I haven't been through anything like this, and so I don't have anything very wise to say. We're here if you need to vent.

    Gordon
    Myectomy on Feb. 5, 2007.

    Comment

    • #3
      Re: The Transplant conversation has become serious

      Hi Michael,
      Best of luck getting listed for a transplant, I know it is often a lengthy process with a lot of waiting, Dr. Maron is tops, he would not send you on to this level if it was not the only option left. Please keep in touch with us. Also, I am very curious about the VO2 test and what it tells them about your heart....Did the test improve at all after your myectomy? I just had a second myectomy 5 weeks ago and I have never had a VO2 test.
      Jill
      After years of symptoms:
      Officially Diagnosed HOCM 2006
      Myectomy 3/11/13 at non-COE
      Extended Myectomy 7/23/14
      At Mayo with Dr. Joseph Dearani

      Comment

      • #4
        Re: The Transplant conversation has become serious

        Hi Michael, sorry to hear Maron's prognosis, well your luckier than I am in where you live you're on the boarder of two different zones (UNOS) Columbia does a lot but are they considerate of HCM patients, NJ is in the zone with Pa and their waiting time is shorter and anecdotally from my conversations with some people there they're more receptive to our condition, I'm going on my 4th yr waiting up here in the Boston area, I'm the most debilitated I've ever been (had a VO2 done last wk 14ef) and all they can say is move to another part of the country. The exemption to Ib is crucial to really being in contention for a transplant and they won't give me one up here they rely on systolic heart failure numbers where everyone knows a diastolic CHF patient won't reflect them. I'd get listed in both areas if I were you, To emphasize the disparity across the country with the distribution of thoratic organs, mine and our friend Bob (bob in Texas) who was transplanted a year ago last march (I was listed 6months before him) told me last week about a billboard on a highway down there for Baylor university hos. touting their transplant program stating "Seven days to a heart transplant". If you don't belive me look up their web site it says "we're the highest volume heart transplant hospital in the country ,with a medium waiting time from being listed Ia to transplant in seven days" Life and UNOS isn't fair.
        had HCM since birth
        'enlarged heart' identified in 96'
        HOCM dx in 7/08
        Myectomy 8/09
        extended Myectomy 5/10
        'End stage' HCM dx 8/10
        CRT-D implanted 9/10
        evaluated for Transplant 11/10
        Listed for transplant 6/11

        Comment

        • #5
          Re: The Transplant conversation has become serious

          Michael, I remember the shock I felt when I was told transplant in my future. Scary! Best thing I ever did. My suggestion is to get listed at a COE that does HCM transplants as our hearts do not follow the norm. Matzbo, can you change transplant centers? Enough of this already. I can't imagine your frustration.
          Midge

          Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
          ICD&Pacemaker 1996
          Heart transplant March 19, 2004 @ Mayo Rochester
          Mom of Kaye.

          Comment

          • #6
            Re: The Transplant conversation has become serious

            Dr. Heitner just referred me to the Heart Failure Team. I had my V02 Stress test and a number of "11" with Severe Circulatory Impairment for the results. I am sure this is bad news and I feel like I am diminishing at a faster rate than in the past.

            I am looking for more information on the Heart Transplant Procedure process. I am working on losing weight, I am 250lbs @ 5'2". I have found it hard to exercise because of the fatigue over the years of this affliction.

            I am confident in the OHSU providers, just nervous and waiting until Oct.31st to see them next is going to be pure agony.

            Wondering if you can tell me if a number 11 is a bad sign

            Thanks
            Sandy

            Comment

            • #7
              Re: The Transplant conversation has become serious

              Hi Midge, frustration doesn't even come close to how I feel. I've researched and examined, complained and tried to get media attention about two issues, the antiquated distribution system of thoracic organs by UNOS, and the unfair treatment of HCM sufferers by the standards set by UNOS, The transplant center here shares the same clinic space with dr. Maron's HCM clinic you can't get a group more sympathetic to my needs but as I have stated in past threads the problem is caused not by the inability or ineptitude of the transplant team but by the system as it stands and the isolation of my UNOS zone blocked by the large populations of the zones south of New England. The solution of me just relocating to Texas or southern California is not in my financial ability and a system that's funded by my tax money should not be twisted so that an affluent individual has the options not available to everyone else. Well anyways I go in Thursday for another rt, heart cath, (swan) I think this will be my 13 or 14 but I've lost count at least they give me a good 'cocktail' I always tell them to make mine a double. See I haven't lost my sense of humor yet!
              had HCM since birth
              'enlarged heart' identified in 96'
              HOCM dx in 7/08
              Myectomy 8/09
              extended Myectomy 5/10
              'End stage' HCM dx 8/10
              CRT-D implanted 9/10
              evaluated for Transplant 11/10
              Listed for transplant 6/11

              Comment

              • #8
                Re: The Transplant conversation has become serious

                In looking at my response to Micheal's thread I sound like I'm just venting and not having much empathy to you Micheal, It's terrifying enough to be told a transplant is your only path to renewed health and then to hear my negativity. I just want people who have HCM and are facing a transplant to know the truth, if it had been told to me when I was more able to do something about it things might be different today, maybe not but at least I'd have known. It was bad enough getting treated properly for the HCM but the obstacles to HCM people in need of transplants are immense.
                Last edited by maztbo; 09-16-2014, 03:01 PM.
                had HCM since birth
                'enlarged heart' identified in 96'
                HOCM dx in 7/08
                Myectomy 8/09
                extended Myectomy 5/10
                'End stage' HCM dx 8/10
                CRT-D implanted 9/10
                evaluated for Transplant 11/10
                Listed for transplant 6/11

                Comment

                • #9
                  Re: The Transplant conversation has become serious

                  I appreciate your perspective John....I wish there was something that we could do to improve your situation.....I know that your moving to a different zone doesn't change the inequity.....However, moving to another zone allows you to live and fight another day for those who come behind you. If finances are the issue keeping you from moving, maybe you could start an account that people could donate to....or talk to your church .... or start one of those on line jump start financial things ( I don't know the details). I know that moving is more than just finances.....Every time I go to sea level, I realize my heart would be happier if I left the Mile High city......But, my situation is still a viable choice, not a life or death choice.
                  Right now I am on a post - myectomy high with the improvements I feel.But I realize, with HCM, the future is unknown and at sometime I could face the severe disability you are dealing with.....Denver is in a pretty good zone as far as transplants go, so I'm lucky there if my prognosis should change.... However, I'm 65 and will soon be of an age that transplant will not be a choice for me.
                  Sending Love and Light your way
                  Jill
                  Last edited by JillC; 09-17-2014, 05:36 PM.
                  After years of symptoms:
                  Officially Diagnosed HOCM 2006
                  Myectomy 3/11/13 at non-COE
                  Extended Myectomy 7/23/14
                  At Mayo with Dr. Joseph Dearani

                  Comment

                  • #10
                    Re: The Transplant conversation has become serious

                    Thanks for all the support. That is what I love about this group. You all go way beyond the normal " pat on the back, you will be fine" . So much advice and wisdom is represented here. I've never met anyone else from this group except Lisa, yet I know I could turn here for help and guidance.
                    John I'm so sorry about your continued decline. I'm sure your research had a lot to do with the recent reporting on TV. I'm so confused when I go on UNOS website.
                    I did get my call from Columbia today and I am meeting. With a transplant surgeon on October 22nd. I feed to start writing down some questions. Yet I don't know where to begin. I'm fortunate to have some close resources. My husband is a plastic surgeon. My friends dad had a heart transplant at Columbia three months ago. He had a massive MI last year. Barely made it through the LVAD surgery. He is doing great now. I also have a fellow paramedic at work who's wife Is the social worker for the living donor liver transplant program at Columbia.
                    Dx with HCM November 2009
                    Myectomy and Mitral Valve Repair @Tuft's March 2010

                    Comment

                    • #11
                      Re: The Transplant conversation has become serious

                      Sorry, I need to proofread better. My last post was a real mess
                      Dx with HCM November 2009
                      Myectomy and Mitral Valve Repair @Tuft's March 2010

                      Comment

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