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A family vacation..Lisa style

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Lisa Salberg Find out more about Lisa Salberg
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  • A family vacation..Lisa style

    A bit long but well worth the read!
    First I will say that I had a very nice time with my famliy this weekend at a little retreat in Sherman PA - it is called "the Land of the Vikings" a Norwiegan get away.
    Well I was thinking that the lodge is in a very rural part of PA and the nearest first aid station is 20 minutes away, the hospital is nearly 1 hour away. SO I thought that they really should have an AED. I spoke to a woman who is involved in running the group I was with about her thoughts on getting an AED - she thought it was a great idea - and being that a man died there 2 years ago from a "heart attack" she thought it would gain a great deal of support.
    So off to climb the chain of command - I spoke to the Pres.. Joe, of the lodge about getting a fund raiser together to get an AED - He said Great (as long as you do it ) - I said "No problem" I will write a letter explaining the need and you can put it in your newsletter - He said great.

    WELL this is where the story gets interesting.

    A few minutes later the President, Joe asked me what my "job" was (I think he thought I was a nurse). I explained the HCMA.

    Ready!

    He said "Oh I have something like that... IHSS, they told me 25 yrs ago, gave me some pills, I stopped taking them because they made me tired and I have not followed up on it since"
    Those who were there watched my head spin....Larry was one of them so feel free to chime in!
    I asked him what he knew about the disease, he could not really explain it well, as you can imagine.
    I asked about symptoms he said he "ONLY" got dizzy when walking up stairs fast or standing up fast - like his brother - oh his dad died in his 60's of a heart "attack"...
    UFF DA!
    Then I asked "HAVE YOUR KIDS BEEN SCREENED"... He never knew they should be...Knowing this man they will all be screened very soon.

    SO that was my vacation...what do you think about that one!

    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)

  • #2
    How rare is HCM really?

    See,

    When I read stories like that, I have to wonder....how rare is HCM really? I mean, you would think that it would be pretty unusual to just run into someone else who happens to have it, but there you are...

    Did I ever mention to you that my husband was engaged before he met me to another woman who he later broke up with...and, oh yeah, she also had HCM....What about that?

    Well, I hope you succeeded in getting that man to pay more attention and to get his family screened, etc. I know that when my dad was diagnosed, he wasn't much more interested that your new friend Joe. It was only my own neurosis which led to my own diagnosis.
    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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    • #3
      Lisa's Vacation

      Lisa, I'm glad you had a good time with your family, but clearly you were sent there for another reason. Becky

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      • #4
        Lisa, Lisa, Lisa. I thought you went on vacation!! Don't you ever take a break?!?

        Just kidding. I'm glad you were able to talk to Joe and I also believe you guys were put there for a reason. Thanks for sharing.

        Reenie
        Reenie

        ****************
        Husband has HCM.
        3 kids - ages 23, 21, & 19. All presently clear of HCM.

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        • #5
          Lisa:

          Are you talking about joe "Z"?

          Lynn

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          • #6
            Lisa did do a complete Linda Blair head spin. I saw it with my own eyes.
            Lisa\'s favorite (and smarter) big brother.

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            • #7
              Yes Lynn I am talking about Joe Z ...I was going to call you when I got home...but I got hit with the stomach bug and ..well without too much detail I was out of it for a full day...Evelyn K was sick at LOV and I think she was kind enough to share it..OH Adam is sick today
              but I am much better today
              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


              • #8
                Lisa...

                How glad am I today that we now have an office!!!! Last time you guys had the stomach bug....I remember how lucky I was that you guys shared it with me!!! :P

                Ellen
                Ellen
                HCMA

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                • #9
                  I too was a victim of "Typhoid Evelyn", and spent the day yesterday home on the couch. I gotta remember to send her a card.
                  Lisa\'s favorite (and smarter) big brother.

                  Comment


                  • #10
                    Never mind!! I got it anyway!! Small neighborghood!! Michael was so kind to give it to me for Valentine's Day!! UUUGGGHHHHHHH!!!!!!!!!
                    Ellen
                    HCMA

                    Comment


                    • #11
                      Ellen - I am SOOOO sorry to hear that..the good news is it only lasts 2 days tops...feel better!!
                      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


                      • #12
                        Thank you!! Feeling better already (a little anyway!!)
                        Ellen
                        HCMA

                        Comment


                        • #13
                          Then NJ doesn't have what I have here in MD. It will be a wk for me tomorrow, and I still am not completely over it. BAD stomach bug! Linda

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                          • #14
                            Hope you feel better Linda! It was a rough 2 days ...could not imagine a whole week!

                            Ellen
                            Ellen
                            HCMA

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                            Today's Birthdays

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