Thursday, December 27, 2007

Our PKD Story - Chapter 1: The Diagnosis

Well, I've been blogging here for almost six months now, and since I seem to be getting a small but steady number of visitors happening across the blog, I thought it was time to tell our PKD story. So, here goes...

It seems that as long as I have known Jeanne, she’s been suffering from PKD – although we didn’t always know it. Jeanne and I met in college back in 1986 (wow, how time flies!), and as far back as I can remember, Jeanne would get these sharp pains in her side from time to time. She would describe the pain as “feeling like someone was sticking a knife into me”. Of course, the medical clinic at college was pretty worthless, so there was no explanation of these pains forthcoming from them. Later, after graduation, Jeanne landed a job where she was covered by insurance, and proceeded to see several doctors to try to find out what the deal was with this pain. Several different tests of several different body parts provided no answers.

In September of 1992, we got married. Soon after, Jeanne went for another test, this time a sonogram of the gall bladder. Thankfully, this time, the sonogram technician decided to do a little extra exploring and took a look at the kidneys, finding them full of cysts. This led to a follow-up appointment with a nearby nephrologist in Poughkeepsie, where we received an official diagnosis of PKD.

The thing I remember most about that appointment was the complete lack of compassion that this nephrologist had and the absolute sense of doom he was able to impart on us. He actually took out a book and showed us pictures of a newborn infant with polycystic kidneys and explained to us how since PKD is a genetic disease, we shouldn’t even consider having children. Wonderful thing to say to a newlywed couple on the day they are learning they have a chronic disease to deal with! Needless to say, that was our first and last appointment with that particular nephrologist. be continued...


New to PKD said...


First, I want to shout out a thank you for creating the Team Teddy Bear blog, and to let you know that I may not always comment, but I do follow several blogs including your own.

I first found the PKD blogs on the PKD Foundation website, and since then I have discovered a whole new source of information beyond just the technical side of PKD....I discovered the human factor I was looking for; real people living their lives with PKD.

It was a relief to me to see that other people were dealing with the same emotional factors as I was, including things like dealing with uncaring medical personnel such as the one you and Jeanne dealt with at her first nephrology visit.

It takes time and the willingness to share a personal story to create a blog, and I am thankful for those of you do on a regular basis.

Have a fabulous New Year, and know that there are those out there that do follow the blogs.

Bob said...

Thanks for the encouragement, Margaret. Hope the upcoming year is a happy one for you and your family!