After the Walk

The 2008 Walk for PKD in Orlando was lots of fun. Nine out of twelve teammates walked with me yesterday. We didn't quite reach our fundraising goals but I think we did a fantastic job especially considering the state of the economy. The park that the walk was held in is so beautiful. I had no idea it was even there! When I asked I was told approximately 80 walkers participated with a total raised of over $10,000. My team contributed $1,000 of that!

The people in charge did a great job. The check in process was really smooth and the decorations looked nice. There were breakfast foods, drinks, Italian ice for after the walk, and of course tables and tables of educational info about PKD. I have to admit there was a poster on display that had this picture of a normal kidney next to a PKD kidney that made me weak in the knees. I mean, I logically know what the progression of the disease is, I know the outlook, I know the statistics but oh my God I've never seen that picture before. It scared the hell out of me and makes me want to cry even now as I remember what it looked like. I don't want that to happen to me. I don't want that to happen to me. Ok ok being scared and crying isn't helpful. I need to be more like Scarlett O'Hara... I'll think about it another day.

This was my first time walking for PKD let alone being the captain of a team. Hopefully I did a good job. Walking was pretty hard on me yesterday. I actually didn't do the whole 5k because I was just so overheated and breathing too hard. My face was beet red and my husband wouldn't let me continue. That was probably a good call because I am in so much pain now. My back and hips kept me up all night and are continuing today. Luckily, we have no plans for the day. The only thing I have to do for the rest of the day is another 24-hour urine catch. Then tomorrow I go to the lab for bloodwork and to drop off the jug. In the afternoon is an OB appointment. I start my third trimester next week...

Thank you walkers, donors, and supporters of Walk for PKD

National PKD Awareness week is in full swing. Last night I went to the Insurance Professionals of Greater Orlando (IPOGO) and was warmly welcomed by everyone. It was great to meet many of our walkers and donors. I was honored to be given the opportunity to speak about PKD and share information with them. The IPOGO group is a generous one and frankly they overwhelmed me with their “pass the hat” contributions.

This walk has been such a fulfilling experience for me. Even in these tough economic times, generosity of both time and money are still evident. As I told the IPOGO group last night this is a very personal issue for me as I’m fighting for the opportunity to have a full life expectancy along with good health and quality of life. This can come from supporting research to find a cure for PKD. You, the walkers, donors, and supporters are now a part of that mission so from the bottom of my heart I thank you.

Braxton-Hicks Contractions

Oh, forgot to mention earlier... I started getting Braxton-Hicks contractions already!

When I started them I was only 23 weeks. I suspected a kidney stone in the preceding days. Later in the week I went to the doctor in an emergency situation so they could rule out pre-term labor. Although I am pretty convinced my doctor isn't sure what to think about the PKD it is a convenient scape goat for them.

So, the (very) early onset of Braxton-Hicks is being blamed on the PKD and more specifically they suggested the kidney stone set it off by "rubbing against my uterus and causing the contractions to begin". lol

Doctor's prognosis: will continue throughout the rest of the pregnancy and only get stronger. Great.

Free Educational Webinar: PKD Basics

October 14, 2008
8 p.m. (ET)
Featured Speaker: Dr. Ronald Perrone, Tufts University, Boston, MA

Register from the PKD Foundation website!

National PKD Awareness Week

Don't forget... it's the 3rd annual National PKD Awareness Week!

I will be speaking to a group of insurance professionals on Wednesday night about my experience with PKD and the Walk on Saturday.

Update on baseline

Hi, just a quick update (it's been so long since I posted!). The 24 hr urine test was messed up by Quest labs. They only ran the creatinine clearance and apparently skipped the protein. Ugh. So, have to do another one. And what makes me the most irritated about the situation is they are going to bill my health insurance carrier for both of them even though they screwed it up. If they did their job properly I would only have to do this once. Typical.

As far as the pregnancy goes... everything is wonderful!!! Baby is growing leaps and bounds and I'm feeling very well. The only complaint I have is sciatica in my left hip but I've been getting massages, using a heating pad, taking Tylenol, and sleeping with a pillow between my legs. What more can a girl do?