Tuesday, October 23, 2007

Every Picture Tells A Story Don't It ...

So, we've been discussing kidney issues on the comments section of a post further down there on the page, and I thought maybe it was time to blog again about PKD. It gives me a chance to spread information about PKD ... plus, it gives other people a chance to comment on their experiences and I really enjoy that.

I have Polycystic Kidney Disease (PKD). PKD affects 600,000 Americans and 12.5 million children and adults, worldwide. There is no treatment or cure ... but there is always hope.

PKD affects more people than Down syndrome, cystic fibrosis, muscular dystrophy and sickle cell anemia combined ... and yet it's practically unknown to the public. The disease produces cysts, both inside and outside the kidneys. These cysts fill with fluid, grow, and multiply ... which, over time, causes the kidney to become enlarged and lose function.

So what's my experience like? I've been told that the earlier you are diagnosed, the worse the course of your disease will be. I suppose that's true. I was diagnosed with it when I was twenty ... although I'd been having symptoms since I was twelve ... and I'm at around 50% function now. Two years ago I was around 60%. I'm being tested again in November ... so, at that point, we'll know if I'm maintaining.

I've been on various types of blood pressure medicines since I was twelve. I'm on two right now ... Cozzar and Lisinopril. They seem to be doing the job pretty well. I've done the kidney stone thing ... and I wouldn't wish it on my worst enemy. I've had cysts break. In fact, that's pretty common ... seeing blood in my urine doesn't freak me out anymore. I carry a Darvoset with me at all times in case things get bad. Most days I don't need it ... but sometimes I do.

The hardest part of this experience is that, from the outside, you look healthy. Other than a mid-section that looks bloated due to the enlarged kidneys, there's no telltale sign of the disease. PKD patients may have chronic pain and wounded organs ... but we appear outwardly "normal."

Doctors will tell you that symptoms of PKD are high blood pressure, pain in the back, side or stomach, blood in the urine, kidney stones, frequent urinary tract infections, heart problems or strokes. What they don't tell you is how difficult it is to explain to co-workers why you're achy and tired all the time. They also don't tell you that you're going to get to know your couch and your pharmacist on a first name basis.

So having said all that ... I'm offering up a link. A member of my PKD Group recently posted a link to a PKD research article with photos that give you an idea of what's it's all about.  I'll warn you now, it's not a pretty picture. But I'm sharing it because the photos actually helped me cope. It explained the pain I feel when I bend or twist. In any case, if you're curious ... click here to go to the article ... the pictures are mid-way down the page.

So that's where we're at. If I whine or complain here, please understand that I'm probably having one of my bad days. On the other hand, if I write about unicorns and rainbows and leprechauns ... I've probably taken a Darvoset.

"When humor goes, there goes civilization."
Erma Bombeck - Author, Humorist, and PKD Patient