Friday, September 26, 2008

I didn't marry a mutant

Because there has been no known family history of PKD in Jeanne's family, it's always been assumed that Jeanne has a mutated form of Polycystic Kidney Disease. Estimates vary, but generally it is believed that about 10% or so of people with ADPKD have obtained it through a spontaneous mutation, with the other 90% inheriting it from their parents. Personally, I've for some time suspected that the mutation rate was probably somewhat overestimated, because it is certainly possible to have a mild enough form of PKD that you never experience kidney failure, and perhaps never learn that you have PKD.

Earlier this week, Jeanne's brother Matthew had to go into the hospital for gall bladder surgery. Last night we got a call from his wife, Emily. Turns out while in there working on the gall bladder, the doctors noticed that he had cysts on his kidneys. While he hasn't been officially diagnosed with PKD just yet, it isn't to hard to connect the dots on this one.

So, it appears that perhaps Jeanne isn't a mutant after all.

Monday, September 22, 2008

PKD in the comics

Heidi passed this along in an email today. The online comic On a Claire Day has taken on the subject of PKD in some recent strips. Click on the following links to check them out:

Looks like today's strip was still on the topic, so it might be worth checking back on a daily basis to see how long the theme continues. Some of these really hit home for me, like the one where she is surprised to see how generously people are willing to donate, and also the one commenting on health insurance.

Saturday, September 20, 2008

Walk Day 2008

Today was the Hudson Valley Walk for PKD. It was a simply fantastic day. The weather was absolutely perfect and everything went off great. This year, Jeanne and I helped out with the pre-walk registration process - I was helping guide people in filling out their registration forms and Jeanne was passing out T-shirts.

TJ was very excited to learn that some ham radio operators were helping provide emergency communications for the event. He happened to have his radio in the van, so he went back and grabbed it and then ended up helping out by being one of the folks leading the walkers along the route. The rest of us, as usual, took up the rear and were the last people back.

We were very happy that Rick and Sheila decided to join us this year and glad to have my parents rejoin us as well. We tried to get a full team picture, but Eric ran away before the picture could get snapped. So, we'll have to settle for an "almost full team" picture. Here it is:

Based on our success in last year's fundraising efforts, TJ and I were honored with our own named sections of the walk:

TJ received a trophy again this year for once again being the 2nd place youth fundraiser.

This year, Shop-Rite sponsored a water-break along the way:

Also new this year was some added "security".

The stormtroopers provided free instant photos with them for everyone who wanted one.

In the ceremonies after the walk, Kirsten led a group of us volunteers in presenting a restaurant gift certificate to Heidi to thank her for her five years of running the walk. Heidi will be stepping down after this year as walk coordinator, although she continue to lead the Hudson Valley Chapter. She's hoping that by handing off the walk responsibilities, she can expand the range of events and activities that the chapter performs.

After helping clean up, we all headed back up to our house for a small barbecue. TJ and Sheila went off and played some tennis while the rest of us enjoyed the beautiful weather sitting around the backyard. Then, we all enjoyed some burgers, brats, hot dogs and salads for dinner. It was a really great day!

Sunday, September 14, 2008

Poughkeepsie Journal article on PKD

Today's Poughkeepsie Journal has an article from Laurie Hlavarty featuring our family and the upcoming walk. You can find it on page 3E in the healthy living section or you can check it out online.

Thanks, Laurie, for your help in spreading awareness!

Friday, September 12, 2008

all work and no play makes for a dull blog

Well, it's been over two weeks since my last post. What's been happening? Well, mostly a lot of work around the house and a lot of work at the job. I took a couple of extra days off to make it a five day labor day weekend... and proceeded to spend most of it laboring around the house.

I finished up Brian and Jason's new room to the point where that have now moved partially in. We still need to get a new carpet in there, so I haven't moved most of their stuff into the new room yet. But, we are letting them sleep together in the spare double bed we have in that room until such time as we get a chance to get another twin bed (we already have one in storage)

Dad came up and helped put in a new sliding glass door in our family room. Jason and Brian are so happy that they can open and close the door to get out of the house there now. The mostrosity of a door that was in there before won't be missed - and neither will the cold draft we felt all winter long.

And Mike and the guys from DBS have been making great progress finishing our basement. They are just about complete - just some final touches next week and they should be done.

Mostly I've been painting - painting Brian and Jason's new room, painting pantry doors, painting the trim around the new door in the family room, and of, course, painting the basement...

Of course, I did have some help...

Meantime, there are only eight days left until the walk. Team Teddy Bear has managed to raise over $3600. Great job, team! The Hudson Valley Walk for PKD as a whole is now over $38,000. It's not too late to make a donation, so please feel free to head on over and support the cause.