164) PKD Walk Day

September 15, 2007

We started early today. Shayna and Liz went to Shayna’s first soccer game of the new season and the Kick Kats won, 8 to 1! Shayna played defense. I left the house early to get some money, buy gas, and buy some bottled water, ice, and Danishes for my Kidney Walk Team, The Austin Folkies. When I got to the walk, the parking situation was not conducive to my snacks and water and the walk had all sorts of water plus a full meal after the walk. Oh well… best laid plans, etc. etc.

El Milagro: Zip zap and here I am sitting in my dialysis chair at 1:15, only 15 minutes late after all the rigamarole. “Whew!” I’m tired and full of food and ready for a nap before the UT / CFU game starts in an hour.

PKD Walk Reflections: This mornings Walk for PKD was more impressive and organized than last year’s walk. This year the walk was located in the neat 2nd floor gym of the First Methodist Church, across from the Capitol, with big arched windows like we used to see on Ironside*. I parked the truck and crossed the street to the church’s community center and found my way to the upstairs gym that was set up with tables filled with turquoise t-shirted folks readying for the walk. I found my friend Ananda and we finally figured out that our Austin Folkies Team had a table and right at that time Shayna and Liz walked in. Soon it was time to walk the walk, so we walked out and found Kim, Michael, and David carrying little Emma and pulled them into our group and proceeded up to the Capitol steps, where there was a short speech and introductions of the teams, etc. The march went all around the Capitol and somewhere along the route, Wendy and Boo joined our group and we posed for a picture (taken by Lizzie) along the way. Of course, Shayna ran the route and came back and found us and wetly reported that she was first to complete the course! Back at the center, our team briefly came upstairs to see the setup and then left for their Saturday chores.

We stayed and heard State Rep Donna Howard** address the group and talk about how we can influence our representatives towards the needs of PKD people, mentioning that she didn’t know for many years that PKD affects more people than Muscular Dystrophy, Cystic Fibrosis, Sickle Cell Anemia, Down Syndrome, and Huntington’s Disease COMBINED, and yet PKD gets less funding support than all but one of the others. She impresses me. Jennifer Lawton, from Doggett’s office spoke in place of Lloyd, since his mother just passed away. Lloyd was honored for being instrumental in the House passing the Genetic Information Non-discrimination Act*** that is now languishing in the Senate. All the participants were asked to write their senators to support this legislation. There were awards after the speeches, and I got 5th place for amount collected… and was awarded a new trash compactor! And to finish off the event, there was lots of really tasty barbeque ribs and sausage and lots of side dishes. I ate and zipped off to make it to dialyis. The Austin Walk made $25,752, 10 K more than last year. The Austin Folkies made $1900 so I am just delighted about that. Thank you again to all of you who donated money to this worthy group.

I snooze and wake up to the start of the Texas game. What an anxiety provoking game! Our great Texas team almost goes down the toilet to a central florida team no one’s ever heard of! We struggle through the first half and finally put together a game in the middle of the second half, thankfully. Amanda Ambrosia the Tech comes to de-cannulate me amidst the anguishing game and I lose track of it momentarily to observe her skills. She is the new tech that showed up a couple of months ago, has been in training, and is now allowed to actually touch people. She is somewhat nervous and I help her untangle the tubes from my BP monitor and earphones. She does a good job pulling the needles and taping me up and I tell her so. I weigh out and stand in the weighting room watching the end of the game. Amid crying fans and surprised players, the Longhorns leave the new field with a lousy 3 point victory against a team they’re supposed to beat by 19. I’m glad it’s over. On the way home I predict Kurt Bohls will compare today’s team to “ordinary leftover meatloaf” in his column. Asi es la vida!

Notes: In at 73.9 and out at 72.5 kgs.
* Ironside (TV series) retrieved online September 2007 from Wikipedia at
** Texas Representative Donna Howard online at http://www.house.state.tx.us/members/dist48/howard.htm
*** The Genetic Information Nondiscrimination Act of 2007 retrieved online Sept 2007 from the National Human Genome Research Institute at http://www.genome.gov/24519851#4

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