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dennis Find out more about dennis
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  • #1

    overwhelmed

    I visited the Doc,s at NEMC yesterday. The topic of discussion was heart transplant again,only this time it was more serious than I have had in the past.I go back the end of the month to do some more testing,(blood oxygen consumption test ) and to talk about it in more detail. I,ll try to keep you up to date.Thanks for listening
    dennis
    P.S.
    so many questions
    about the long term
    Tags: None
  • #2
    Re: overwhelmed

    Dennis,
    I know this is a particularly rough spot in the road right now, but you have to keep in mind that you are in the best place in the world for you, medically. NEMC and two other places stand at the top of the world of HCM care. You can tie, but you can’t do better then the place you’re at.

    Find out all you can about heart transplant in today’s world. It has come a long way. Make up a list of questions for the doctors. Somebody just posted that the one stupid question is the one not asked – and they are absolutely right. It is the questions not asked which cause the most problems when dealing with a new situation.

    Feel good, and keep us posted on your progress.
    Burt

    Comment

    • #3
      Re: overwhelmed

      Hi Dennis,
      I am sorry to hear that you are going through such a tough time . We are all hear to listen and offer support whenever you need it and when you ask for it. There are those who have had transplants and visit this board from time to time . Midge Rollins had a heart transplant this year . I am not sure , you may already be aware of this. If not , when you are ready and if you wish you might want to send her a PM. She would be very helpfull to you and be able to answer a lot of quwestions.
      My thoughts and prayers are with you. Keep us posted as to how you are doing.
      Pam
      Dx @ 47 with HOCM & HF:11/00
      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
      Lead failure,replaced 12/06.
      SF lead recall:07,extracted leads and new device 2012
      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
      Genetic mutation 4/09, mother(d), brother, son, gene+
      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

      Comment

      • #4
        Re: overwhelmed

        Hi Dennis,

        Sorry to hear the situation you are in right now . I echo Burt and what he said. The drs. are great there.

        Here is something to ponder, 48 years ago, my father passed away because they couldn't even do a mitral valve change then. (he probably had HCM anyway)

        Amazing how far our medical experts have come in such a short period of time huh?

        I will keep you in my prayers.

        Comment

        • #5
          Re: overwhelmed

          We have had several HCMA members move on to transplant. All are doing well with the exception of 1. From my point of view it is the care leading up to the transplant and the proper medications post transplant that make all the difference. YOU are going to a great center, YOU will have great care, YOU will have the best oppurtunity to do well!!!

          I mentioned the one so I will tell you that prior to transplant she had a problem with a surgical procedure (in the UK) and they left a tube in her stomach - the infection that resulted caused many problems for her. Post transplant (done in the USA)she left the USA and returned to England. She had a bad reaction to the meds and passed away from complications. BUT SHE IS ONE OF about 10 HCMers that I know with a transplant - the others are all doing remarkable!!

          Keep yourself in good health - eat well and talk to the docs about how to best prepare yourself - body and mind for a transplant.

          Be well and know we are here for you!

          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)

          Comment

          • #6
            Re: overwhelmed

            Dennis, I am 5 1/2 months post transplant. I have not felt this good in years and years. Yes, there is medication problems, but that all begins to regulate itself and by this point I have pretty much got that all regulated. I exercise 30-40 min 5-6 days a week. I can bend over and not get sob,. Please im me with any questions. I too was overwhelmed but I thank God everyday for this gift of life. Take care of yourself and follow Dr.'s instructions to keep yourself healthy as possible till time of transplant, it will make recovery so much easier. I now can say I had HCM.
            Midge

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

            Comment

            • #7
              Re: overwhelmed

              I just heard that Midge Rollins has returned to work – part time, and since she is no longer an HCM patient but a transplant patient, and now working, it might take a bit of time to get a response from her. Please don’t fault her if it takes some time to get an answer, she is living a full life, and even though she has a good heart, I’m sure she faces the same time constraints the rest of us do.
              Burt

              Comment

              • #8
                Re: overwhelmed

                Ooops, isn’t that always the case? The minute you say somebody might not be quick to respond, up she pops. Geez, you’d think it was a three day weekend.
                Burt

                Comment

                • #9
                  Re: overwhelmed

                  Hi Burt, Yes you are right I have returned to work part time. But I still continue to check the board on a somewhat regular basis. You are all my HCM family. I need to check out how you are all doing and if there is anything I can do to help. I guess talking to potential transplants is my next calling. I am doing some public speaking here in town to try and get more people to sign up to be donors. How is Mary doing? I really enjoy reading your posts Burt you are so good to keep everyone up on things. You take care of yourself.
                  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: overwhelmed

                    Midge I am so glad to hear that you are doing well. It is a wonderfull thing that you can help others prepare for transplants. I think of you often and am so happy your new heart has begun to give you some return to a quality of life that you enjoy.
                    When I posted to Dennis I had a feeling you were still watching over us and I am pleased that you can stay with us and in our family .
                    Nice to hear about you.
                    Take Care. Pam
                    Dx @ 47 with HOCM & HF:11/00
                    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                    Lead failure,replaced 12/06.
                    SF lead recall:07,extracted leads and new device 2012
                    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                    Genetic mutation 4/09, mother(d), brother, son, gene+
                    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                    Comment

                    • #11
                      Re: overwhelmed

                      Hi Midge,
                      Well you certainly appear to be good hearted – again.

                      I think you’re connecting with prospective transplant candidates, is really wonderful. As you know, that is a pretty high hurdle to get over, and to talk to somebody who’s ‘been there and done that’ is a giant help.

                      I was very happy to hear you were able to go back to work. You now probably feel it is much more of a blessing then most of the rest of us do – but it’s the day to day challenges that keep us young and vital. Of course I’m retired, but I still do charity work and have a pretty full schedule. (I think I’m busier now then before I retired.)

                      So my ex-HCM friend, please keep monitoring the boards and I’ll keep sending happy thoughts your way.
                      Burt

                      Comment

                      • #12
                        Re: overwhelmed

                        Midge, your updates are such a great inspiration to all of us, esp for those who may possibly face transplant in the future. Thanks for your willingness to share all you've learned with so many others. Linda

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