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On my way to Boston

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About the Author

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Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
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  • angall
    replied
    Re: On my way to Boston

    I too, am including your in my prayers. I hope that you finally get some answers. Keep your chin up.

    Leave a comment:


  • Tigger1
    replied
    Re: On my way to Boston

    Mary,

    You are in my thoughts and prayers...STAY POSITIVE


    Tigger1

    Leave a comment:


  • Debbie
    replied
    Re: On my way to Boston

    Mary,

    Wanted to let you know that I am also thinking of you and wishing you the very best. You are facing so much and really are an inspiration with your fighting spirit.

    Debbie

    Leave a comment:


  • Lisa Salberg
    replied
    Re: On my way to Boston

    Mary -
    Glad to hear you are in Boston - Glad to hear you are getting some answers - -Glad to hear you have OPTIONS. We do not always get the answers we want - but - it is good to get to the truth!

    TAKE CARE!
    Lisa

    Leave a comment:


  • Reenie
    replied
    Re: On my way to Boston

    Still thinking of you.

    Reenie

    Leave a comment:


  • Glen Beamish
    replied
    Re: On my way to Boston

    Good luck Mary, lets hope that's not the alternative and they find a better approach.
    But if it is, at least you will have some thing concreate to deal with instead of all the crap you've been going thru.

    Leave a comment:


  • Pam Alexson
    replied
    Re: On my way to Boston

    Mary,

    Sorry for you that things are still uncertain. Good luck with your tests on Tuesday. I hope they are able to get some clarity. Thoughts and prayers.
    Pam

    Leave a comment:


  • Burton Borrok
    replied
    Re: On my way to Boston

    Dear Mary,
    I know you are deeply concerned with your life expectancy in the event you do have a transplant. Think of your life expectancy without it. You told me that so far the longest living person with a transplant has it for about 26 years – but she is still living.

    Let me give you a little background on the procedure. As you would expect, the original transplant patients were people who were in dire straights medically, not counting their heart troubles. The successful patients never left the hospitals, and lived for months. As the doctors learned more and more of the care needed, the life expectancy grew, and then one day a patient actually left the hospital. At this time the life expectancy had grown to a few years.

    Now-a-days heart transplants are performed on normal people who are in need of a new heart, and life expectancy is no longer a real concern. As I mentioned earlier, a woman in Minnesota has survived 26 years already – she was done at the very beginning of the transplants performed in this country. There are also a growing number of people who have had a second transplant, which I expect starts the life expectancy clock all over again.

    Basically, what I am saying is that with the advances in medicine over the past twenty-five years projected forward another twenty years, I see no reason to think that your overall life expectancy will be diminished in any way. Actually, your current life expectancy will be enhanced back to normal. Overall, I would say that’s a pretty good deal.

    Keep your chin up hon. – Grand-pa Burt

    Leave a comment:


  • cynthiaG
    replied
    Re: On my way to Boston

    Mary,
    As you may know, I go to NEMC...I know that Dr. Maron & Udelson will steer you into making the best decision. Are they nice or what!!?? You are in excellent hands. I wish you the very best and hang in there...we are all pulling for you!!

    Leave a comment:


  • Laoshur
    replied
    Re: On my way to Boston

    Mary,
    We are all here rooting you on! Please listen to the doctors there and make wise choices. I am praying for you.
    Rhoda

    Leave a comment:


  • shirleymahoney
    replied
    Re: On my way to Boston

    Mary
    I will keep my fingers crossed that they find some thing to give you a better quality of life you take care and have a little fun ok

    Shirley

    Leave a comment:


  • Toogoofy317
    replied
    Re: On my way to Boston

    Well,

    The long and short of it all! Even the folks in Boston are stumped. Unfortunatly "heart transplant" is coming up more frequent. They didn't jump into it to much because they want to see the results of a couple of more tests. So on Tuesday I am scheduled for both a nuclear stress test and a V02 stress test. They will then get back with me and discuss what needs to happen next.

    As far as work goes well its my choice. I was told that it would not make things any worse but I do need to cut back. I still want to try and work so maybe we can do it with restrictions. If not then they will back with the disability.

    So it is still the waiting game. I'll keep everyone posted.

    Mary S.

    Leave a comment:


  • Laoshur
    replied
    Re: On my way to Boston

    Mary,

    I think you need a new body!

    We are all here cheering you on to getting help!

    Rhoda

    Leave a comment:


  • Toogoofy317
    replied
    Re: On my way to Boston

    Well,

    I survived the first part of the trip the wedding. It was beautiful! It was the best time I have had in a long time. It sure is good to be here. Finally, I can stop worrying for a little while at least.

    As far as Friday goes I'm not sure I'm looking forward to it. I guess I'm scared I might hear things I don't want to hear. But whatever happens I'm sure it will be for my best intrest.

    I apologize for not keeping everyone updated. The past few weeks have just been trecherous(sp?). Not only was the ticker acting up but I was diagnosed with a new ailment. It is called gastroperesis. In other words my stomach does not like to work it takes 60 times the normal amount to digest my food. So it was what was causing all of the stomach pain and other problems. It is much like HCM no cure! Great another one. Another ironic thing is that other than medicine the next step would be a gastric pacemaker. How funny would that be! I think I'd be the only person in the world with two pacing devices. I wonder if they would interfere with the other. Oh well, thats down the line.

    Thanks to everyone for their kind thought. I will keep you all posted! Oh yeah if anyone is going to be at the HCM clinic on Friday I'd love to meet up with you! PM and we can arrange something.

    Mary S.

    Leave a comment:


  • Donna
    replied
    Re: On my way to Boston

    Mary, take care and I hope they find out the best way to help you. keep us informed and try to smile.

    Leave a comment:

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