Friday, June 17, 2005

Part 1 The Conference

In June of 2004, Pulmonary Hypertension Association held their biennial conference in Miami Florida. I made arrangments to attend along with my brother-in-law. We would spend Shabbos in a nearby hotel and walk to the conference. We hoped to find some bit of life saving information.
My flight back to New York was to leave on Sunday morning at 10am. As soon as I arrived back home , I was supposed to take Nechama to Camp Simcha (see previous post). The conference was interesting and there was a wide range of people there. We saw saw other children with the same illness as well as adults. Nechama's medicine was delivered 24 hours a day via a CADD Pump which provided life sustaining medication thru a permanent introvenous line. The pump is about the size of a walkie talkie but quite a burden for Nechama's frail body. We learned a neat trick on how to conceal the pump by wrapping it with an ace bandage around your leg covered by her skirt. I was eager to teach her this new trick which we used only 2x but the conference was worth it for that alone. There were some new medicines and some new methods of administering the medicines but no magic bullet. We were already on the cutting edge. This was the first time that my brother in-law saw,upfront, how serious the disease was.
There was even a couple who had lost a child to pulmonary hypertension who came to the conference. Somehow it was a comfort. It linked them to the a time when their child was alive.


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My Goal is to post at least 2x per week on Sunday and Wednesday.