If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you


No announcement yet.

AED progress - one at a time


About the Author


Lisa Salberg
Lisa Salberg
HCMA CEO and Founder
Find out more about Lisa Salberg
  • Filter
  • Time
  • Show
Clear All
new posts

  • AED progress - one at a time

    Well first a little story -

    I have been going to a little Norweigan retreat since I was a kid, it is called (no laughing here) LAND OF THE VIKINGS, in Sherman PA. Last winter while there I found out that someone else had HCM (this could go under that small world thread!). I then looked around and honestly had a bit of a panic - we were 30 miles from the nearest hospital and 10 miles from the nearest fire / firstaid station - which was all volunteer. I asked if there had been any problems with lack of access to first aid at "LOV" and was shocked to find out that a man had died from a cardiac arrest on the dance floor within the past year.

    I gathered the President of our lodge and the operator of LOV and suggested an AED. They thought it was a great idea.... but who was paying???? Well the next glitch was the woman who had run LOV left and some new people took over. The new operators turned out to be great news, one of them was a former EMT who was as freaked out as I was about the lack of services available in that remote area of PA.

    I just got home from a wake/viewing of a neighborhood resident how passed away from advanced cancer (STOP SMOKING PLEASE!!!). I ran into Joe the Pres. of our lodge - he made a bee line to me. LISA great news we got the funding and the AED is coming this week. Well - It took 1 year and 3 months - but LOV will have an AED!!!

    Having more Automatic External Defibrillators is great news for everyone! The moral to my little tale - Never give up!!
    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)

Today's Birthdays