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End-Stage HCM patience... starting the transplant evaluation process

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pkasin Diagnosed with IHSS 32 years ago (now 53) ICD/Pacemaker 2013 Non-Obstructive HCM, End-Stage (yuck!) Being evaluated for heart transplant Find out more about pkasin
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  • End-Stage HCM patience... starting the transplant evaluation process

    Hi All,

    Well, it's official... as my wife has told me for many years, I am special - and now, I am unfortunately one of the few HCM club members (non-obstructive) that will need a heart transplant.

    As such, I am wondering if anyone can give me any advice or pointers. I am still getting around okay, but with more and more arrhythmia sessions, and getting tired more easily. I am 53 years old, and up until now have been exercising quite a bit, and erroneously believed that I wasn't going to be affected further by this disease... all until I went to the Tufts Medical (after a bad episode where I ended up in the Hospital), to be evaluated for the Septal Myectomy.... only to find out that I wasn't a candidate because my heart walls and not my septum were the issue.

    From being an exercise demon to this within weeks. What a shock.

    Anyway, does anyone know where I can get the statistics on transplant outcomes so I can review my hospital and surgeons?

    Any advice on the transplant list and how it works would be appreciated.

    Also, I am taking 400mg/day of CoQ10, and was wondering if anyone had any information on it - positive or negative (aside from $$).

    I actually want to get back to exercising (lightly), but to be honest, I am scared - I ended up in the hospital last time for just pruning bushes with an electric hedge trimmer.

  • #2
    Re: End-Stage HCM patience... starting the transplant evaluation process

    I am not obstructed and heading this direction too. I am interested in this too. I has a great talk with Lisa at the Hcma office. She is fantastic and really understands. Have you ever called? She knows a lot about the process.

    Sent from my SM-G900V using Tapatalk

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    • #3
      Re: End-Stage HCM patience... starting the transplant evaluation process

      Originally posted by lisaandchrisv View Post
      I am not obstructed and heading this direction too. I am interested in this too. I has a great talk with Lisa at the Hcma office. She is fantastic and really understands. Have you ever called? She knows a lot about the process.

      Sent from my SM-G900V using Tapatalk
      Yes, Lisa is wonderful, and we're lucky to have someone so dedicated. Fortunately my V02 test showed I am not ready for a transplant, so I am happy. It was two weeks of **** before the V02 test, however.

      You make all these plans for life (mostly in a straight line), only to find the monkey wrench in the works! In any case, I know where to come for information! Thanks HCMA!

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      • #4
        Re: End-Stage HCM patience... starting the transplant evaluation process

        That is great! Keep strong!

        Sent from my SM-G900V using Tapatalk

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        • #5
          Re: End-Stage HCM patience... starting the transplant evaluation process

          I know someone here in Chicago that had an LVAD for 5 months....walked in to the hospital under her own power for the transplant and at six weeks post transplant is doing amazingly well. One option that you don't see too often here is Northwestern Memorial in Chicago. The cardiac program is top ten, and I have nothing but good things to say about the hospital. I had a myectomy last November and have been symptom free since then. I did get listed for a kidney a couple weeks ago and they were great with the process.

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          • #6
            Re: End-Stage HCM patience... starting the transplant evaluation process

            Hello,

            My name is Cynthia and I have been a long time member of this board...I haven't posted in a very long time..but thought I would get on and check on a few people I've been thinking about. I had a heart transplant at Tufts on Dec. 15, 2011. I was 57 years old, non-obstructive HCM. Went downhill very fast. I cannot say enough about how wonderful and caring the doctors there were. The BEST of care...saved my life. Have you spoken with any members of the transplant team? Dr. Denofrio or his staff? They can provide you with any information you need in regards to transplant. Again, I cannot emphasize enough how great this hospital is...one of the best in my opinion. I know that Tufts performs more heart transplants than any hospital in New England. I wish you the very best....I feel Sooooo much better with my new heart...it was a miracle
            \"It is not length of life, but depth of life.\"

            Ralph Waldo Emerson

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            • #7
              Re: End-Stage HCM patience... starting the transplant evaluation process

              Glad to hear from you again Cynthia and to learn that you are doing well !!
              Onward and Upward !

              Diagnosed 4/07 HCM with fixed & dynamic obstruction
              Myectomy with resected cordonae tendonae 4/08 CCF
              ICD 10/08

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              • #8
                Re: End-Stage HCM patience... starting the transplant evaluation process

                Hi Cynthia,
                Me too - glad you're still doing well!
                Gordon
                Myectomy on Feb. 5, 2007.

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                • #9
                  Re: End-Stage HCM patience... starting the transplant evaluation process

                  Cynthia - So glad to hear your doing great! Even though you don't have HCM anymore, you're welcome to visit old friends and help others here anytime!
                  Marc
                  Diagnosed @ 48
                  Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                  Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                  AICD - Valentines Day '08, Spark Plug replaced 11/14
                  After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                  Quietly going insane . . .

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                  • #10
                    Re: End-Stage HCM patience... starting the transplant evaluation process

                    Thank you all SO much! I don't know what I would have done without this board. It has been 12 years since I joined!! I will still post from time to time. If anyone would like to talk about what you are going through (on transplant list, waiting at home or in the hospital), I am more than happy to....it's a long road but it is a miracle that we get a second chance in life. It has been 3 1/2 years since my transplant but yet seems like yesterday. PLease feel free to contact me...I've been there
                    \"It is not length of life, but depth of life.\"

                    Ralph Waldo Emerson

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                    • #11
                      Hi Cynthia,

                      It appears that my post of three years ago was extremely premature, and my EF was too high for me to make the transplant list, even if the doctors had thought I'd have ended up (due to symptoms) on the list. So, with more symptoms (aFib, CHF and fluid retention), I am again being evaluated. I am working with both Dr. Rowin and Dr. DiNofrio now to see where things go. My right heart catheterization showed my pressures are an issue, so I have been told I can potentially get on the transplant list.

                      That being said, they may or may not put me on it right away. Not sure I understand why they wouldn't put me on it, but I guess it has to do with keeping me going well-enough using my own steam. Would you have insight into this reasoning?

                      Like what you wrote above, it seems that within a month or two, aFib and then out of control liquid retention began. So, they are trying to change my aFib treatment from Sotalol to Amiodorone hoping this may help my function and aid in my CHF symptoms.

                      Since non-obstructive HCM patients are more rare, it seems that when I ask about timelines and what to expect, I don't get a lot of feedback. Can you tell me how long it took for you to go from functional normal (+/-) to non-functional? I am trying to figure out how to work/live/pay for the process, and for me this is a major concern... If I can't work, and get on the transplant list, does that make me eligible for disability? Without my company insurance, I am pretty well cooked if I am not on disability.

                      Also, can you give me insight into how long it took for you to be back doing normal activities like working? Do you have limitations?

                      And, most importantly, a few years down the line... 6.5 years, HOW ARE YOU?

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                      • #12
                        Pkasin.. This board is pretty quiet as you can see... you might try sending Cynthia a private message which will go directly to her email. Also, The founder of HCMA , Lisa Salberg, had a transplant not too long ago. You may wNt to call the HCMA and ask her some of your questions.
                        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

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                        • #13
                          You may also want to see the HCMA discussion group on Facebook, which is much more active.

                          Gordon
                          Myectomy on Feb. 5, 2007.

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