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Here, There, & Everywhere...

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Dave Johnson Find out more about Dave Johnson
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  • Here, There, & Everywhere...

    Hey gang, long time no post. I read almost every day, but find I often have little to say because I know so little about all this.

    Some of you know, my wife is a travelling nurse and we've been travelling the country on contracts for the last two years in hopes of settling near Tufts in Boston for transplant. I've been on that list for about a year, and we've finally settled in Springfield, MASS, about 1.5 hours away.

    Dr. Keirnan (my transplant doc) informed us last week that wait times at Tufts are edging into the 10-12 month range. My blood type is O, which doesn't help. I know some other HCMers have been turned down by UNOS at status 1B because the list is so long right now. He has advised us to relocate to an area with shorter wait times. We're looking at Penn State Med Center at Hershey, PA because they seem to have a history of transplanting HCM patients and the wait time has consistently been 60-90 days for all blood types over the last 10 years. Plus we have a huge support network in that area, and we would be able to afford to live close to the hospital instead of 1.5 hours away, as is the situation now with Tufts.

    All that to say that we basically moved here for Dr. Maron's expertise, but as my failure progresses, the HCM is less of an issue than the edema it's causing. Because of that, an HCM physician won't play as big of a role in keeping me alive until transplant as we once thought. This means we theoretically are safe to simply go somewhere with a good transplant team. This makes me really nervous though as I know how tough it can be to get a 1B exception from UNOS, even in the Boston area. Obviously it's happened in PA because the OPTN/UNOS site shows 5-6 HCMers transplanted there in recent years. I just worry that we won't find a team as good as the one at Tufts (those of you who know Heather, Marty, Deb, etc. know what I mean). It's a small clinic and I feel very much like part of the team in making decisions. They're honest and keep me in the loop. I've never had that experience before with this problem. Do we move yet AGAIN, in hopes of a shorter wait time and a team that may not be as good as Tufts, but can still get the job done? Does anyone know about HCM treatment at Hershey? I've got some calls in and Dr. Maron is going to investigate, but I'd love to hear from some actual patients with experience at this center. Anybody out there?
    "We come into the world and take our chances, fate is just the weight of circumstances - that's the way the lady luck dances...roll the bones." - Rush

  • #2
    Re: Here, There, & Everywhere...

    Hi Dave,
    John here, we've talked before and glad to see you're so satisfied with our team here at Tufts. I was up there last week and my conversation with Heather was not too promissing, she also broached the idea of relocating. Tufts has 20 patients in status I currently,they have been the leader in transplant numbers over the last several years (24-26 on avg)in our UNOS area,but they've only done one since the first of the year.Getting a status Ib exception because of my HCM and the lack of any meds or therapies to bridge the wait has been denied no matter how much Dr DeNofrio has fought for it with the UNOS board. Kiernan has said that even a Ib doesn't make much of a difference that all transplants are done to people who are in the hospital and that they had'nt done a transplant from home in over 2yrs. I can't tell you how frustrated I am, I've been listed for over two yrs,8 righrt heart caths,picc lines,sent home on IV meds,taken off IV meds(didn't do any thing),I'm extremly dibilated and almost completely bedridden and I don't feel any closer to getting a transplant,reality is unless you're in the hospitol as status Ia your're not really in play for a transplant.
    Heather thought that Hartford is in a different UNOS zone and suggested the I might want to explore being listed there also, Hartford is closer to you than Boston is,only thing is they'd want to approve you independently from what you all ready did at Tufts so you'd have to go through that agravation again,but if you moved to any other zone they'd make you do it there also.Hartford would be a little tougher for me it's about a 3hr drive from the Cape.I've heard good things about the program in Hershey Penn.so that does sound like a good option.You have my # call me if you like.
    Take care,John F.
    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

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    • #3
      Re: Here, There, & Everywhere...

      Hey John - been meaning to call you but life has been crazy. Yeah, I'm getting the same picture too: 1B transplants in the Tufts zone simply aren't happening. We thought about Hartford, but PA looks really good to us because of the job and support situation there. It's also way cheaper than living in MA (what isn't?). Have you heard anything about Hershey re: HCM patients? We tried getting listed in St. Louis way back and the transplant doctors were almost totally inaccessible, no communication between team members, etc. which led to bad/no information for us and a lot of frustration. You know what I mean about the Tufts team - they are very on top of everything and everyone stays informed. You can email and call them and expect to hear back within 24 hours. It will be tough going from that back to a situation where I can't talk directly to the doc or phone calls get ignored because I'm only a status 2 right now. I'm weighing the possibility of that against the shorter wait time. It seems like staying here isn't an option at all either way.

      I've been meaning to ask you - are you in a lot of chest pain at rest? I keep expecting to have continual crushing chest pain and I only have it from time to time. Is that something I should expect as things get worse? I get you with the whole sedentary thing - I'm almost there myself. But it's mainly because I get so sob when active, not because of pain.
      "We come into the world and take our chances, fate is just the weight of circumstances - that's the way the lady luck dances...roll the bones." - Rush

      Comment


      • #4
        Re: Here, There, & Everywhere...

        Ya Dave,looks like we're on the exact same page, the angina is mostly the same but have had some more intense incidents lately at rest and on exertion (if you could call anything I do 'exertion'.LOL). Any and I mean even the slightist movement or activity,I'm completely sob,I need to take a nap after a meal,and forget about how miserably nauseaus and lightheaded I am when I wakeup in the morning these are the things that have most intensified over the last few months.It would be real difficult for me to relocate financially and logistlicly so that's not an option unless I win the lottery.Right now I'm fighting something brewing in my lungs hopefully it won't develop into pneumonia

        Saw dr Link last week also (the EP) and there's no sign of any abnormal arrithmias so nothing is happening there, it seems they're certain that I'll go over the 'cliff' but no one can predict when and what does that exactly mean? There is a member here that I talked to a few months ago that was in the hospitol down in Hershey waiting for a transplant, I think his name is aaron so you could pm him.
        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

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        • #5
          Re: Here, There, & Everywhere...

          It breaks my itty bitty heart to read about both of your struggles. I'll be praying continually for your both.
          Missie
          HCM diagnosed 8/1/11
          changed to HOCM 1/23/12
          Septal Myectomy 4/5/12 at CCF
          Gene positive, no one in my immediate family is willing to be tested, including my 21 year old son

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          • #6
            Re: Here, There, & Everywhere...

            Dave - Dr. Eric Popjes is one of the transplant docs at Hershey, and he speaks at the HCM Annual meeting every year. He has alot of experience with HCM and is probably responsible for those statistics that you quoted. He is great and you would be in very capable hands with him.
            Daughter of Father with HCM
            Diagnosed with HCM 1999.
            Full term pregnancy - Son born 11/01
            ICD implanted 2/03; generator replaced 2/2005 and 2/2012
            Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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            • #7
              Re: Here, There, & Everywhere...

              Yeah, I've gathered quite a bit of info in the last few days between John and another member here, Dr. Maron, and the HCMA. Looks like we're headed to Hershey. I have an appointment with Dr. Davis on the 14th and we'll see where it goes from there. Sounds like there's good medical care for HCMers, plus we have several really good friends in the area that can help us out when I'm too sick to do anything. Win/win. Except for the pain in the butt of moving again, again, again, again. Hopefully this is the last time.
              "We come into the world and take our chances, fate is just the weight of circumstances - that's the way the lady luck dances...roll the bones." - Rush

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              • #8
                Re: Here, There, & Everywhere...

                Dave -

                I wish you nothing but the very best - hopefully this will be the last move you ever have to make.

                Comment


                • #9
                  Re: Here, There, & Everywhere...

                  Dave, please keep us posted. Hershey is a good center and you will be in good hands. Waiting on a transplant is tough. Keep your chin up and trust. You too Matzbo
                  Midge

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

                  Comment


                  • #10
                    Re: Here, There, & Everywhere...

                    If he is there are no Yeah, I've gathered quite a bit of info in the last few days between John and another member here, Dr. Maron, and the HCMA. Looks like we're headed to Hershey. I have an appointment with Dr. Davis on the 14th and we'll see where it goes from there. Sounds like there's good medical care for HCMers, plus we have several really good friends in the area that can help us out when I'm too sick to do anything here.

                    Comment

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