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michael obrien
michael obrien
Dearly Departed
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  • walking

    hello to all my hcm extended family I hope all are feeling well,and if not atleast confident and hopeful that tomorrow will be better[lets pray}.I went to the beach today its about a 20 min drive from my house.their is a boardwalk and it was a gorgeous day.windy I should say really windy my face and neck are as red as a tomato.I walked further today than since I was diagnosed 4.5 miles.that might not sound like alot but .I have had days when I had to stop and lay on the ground walking .5 of a mile.I havent felt that way recently THANK GOD!!!! I did not notice any symptoms I dont know if its just that I have adjusted to how I feel or what.I think these medications toprol etc.are working to some degree I still feel frustrated when I see all the other joggers etc.out there and I know that that isnt me,but today as I indulged in an unhealthy dose of self pity.Up the ramp onto the boardwalk comes a man a little older than me mid to late 40s in a wheel chair.he turned on ahead of me and I was walking behind him for A while and I prayed for him.{in my head}and began to be grateful again and thanK God for what I can do,and I wish I could hold onto that attitude all the time ,but its fleeting and usually skitters off once the rest of lives clamors come flooding back into my head.you know the usual suspects bills job family etc.I just wanted to share this with all of you.I could smell the ocean,hear the waves and watch the seagulls attempt to use me as target practice{only kidding,but not really}I find strength when Im afraid or anxious about tomorrow knowing all of you out there are dealing with this successfully each day. Im so grateful to Lisa for turning a tragedy in her life into something that helps so many.take care mike
    One day at a time.

  • #2
    Michel me bay,

    Sure’n you’re one of G-d’s favored children, and it’s not because you saw a man in a wheelchair. While He may have given you a heart that is a wee bit different then most, the one you have has a full share of empathy and love of His wonderful works.

    P. S. Try a wee bit of Noxzema skin cream on that red neck of yours. We don’t want people referring to you as a redneck now do we?


    • #3

      That was alot 4.5 miles, i flipped when i read that, well not really, that would kill me, but i have a question for someone when i walk i swell really bad or after a shower i also swell, i hope someone can answer this for me, could it be my heart failure causing this?

      Diagnosed 2003
      Myectomy 2-23-2004
      Husband: Ken
      Son: John diagnosed 2004
      Daughter: Janet (free of HCM)

      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


      • #4
        hi burt I love your Irish accent.I actually read it and pronounced it as you wrote it.you kind of reminded me of John Wayne in the Quiet man(great movie if I dont say so meself)as you know I come from an ethnically diverse area,and I love it that way.within a one mile radius of my house I can eat anything from knishes to canolis.I enjoying sharing and learning about other cultures.I am glad you are part of this board things just werent the same when you couldnt post.shirley I was glad to read that you grandaughter didnt suffer any broken facial bones.though she will be in pain for a while. thank God it was not worse missing teeth etc.I know it is so difficult for a young kid to suffer I remember breaking my wrist roller skating as a kid and I could not believe the pain I was in.the only thing that brought a measure of relieve was when I figured out I was no longer responsible to do any written H.W...that shows you where my head was at.I think I over did it somewhat on my 4.5 mile walk because yesterday I had that heart in my throat feeling as well as a few pvc 's.Im ok today thank God.I say that often because I remember just how out of control I felt when my heart is acting up.I have no control over it.and can only pray. It is challenging also when at the time Im doing some kind of exercise I may not feel any adverse affects ,and then later on it will catch up to me.thank you for replying to my post.feel good mike
        One day at a time.


        • #5

          I swell when I walk for a little while too, like if I walk through the grocery store, I have to sit down. I usually sit down at the pharmacy. I also get leg pain, mostly in my left leg. I know the feeling.


          Oh, I love the beach. When I die (which will not be for a long time, I'm not putting anything out there) the beach is where I will live. I love, love, love the ocean.

          And congrats on walking 4.5 miles, ahh, I remember when I could do that, I was much younger. And I used to be in pretty good shape.

          I give myself a dose of self-pitty more than I should. But at home, I am on the defensive much of the time, my ox of a husband always says, "you're not dead yet." But he does not understand the limitations I have now.

          You are so lucky to live near the ocean. It is such a beautiful wonder. Enjoy.


          49 yrs. old
          Diagnosed at 31.
          Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
          First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
          Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
          Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
          My brother passed away suddenly at 34 yrs old from HCM.
          2 teenage children, ages 17 and 15.


          • #6
            It sounds like a lovely walk on the boardwalk - I wish I were there!

            It was so nice to see you the other day out on Long Island. I am also gald to hear that you were able to walk 4.5 miles - I find walking at the ocean (AKA shore for you NJ types out there!) is so much easier then walking anywhere else.

            Take care!
            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)


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