P is for PKD

a-to-z-letters-pLast week, somebody asked me ‘Are you going to write about your kidneys for the letter ‘K?”

I said no. I don’t really want to do that. Instead, ‘K’ day was about Karma.

However, today (yes, I’m getting in under the wire here – it’s already after 6 p.m. here in Los Angeles, which means it’s practically tomorrow everywhere else), I decided I would write about kidneys. Not because I want to blah on about my personal issues, but simply to raise awareness.

Hands up if you have no idea what PKD stands for?

Don’t feel bad. Most people don’t.

So what is it? It’s polycystic kidney disease. It’s an inherited disease whereby multiple cysts (you probably figured that out by the poly-cystic), grow on your kidneys. Growth is slow in the first half of your life, but eventually the cysts will cover your entire kidneys and will cause them to shut down. There is no known cure at present and the only treatment is dialysis (not a great option) or  an eventual transplant.

PKD killed my father in 1983 when he was just 46 years old. We believe his father also had the disease. My dad’s father passed away when he was 50 and my dad was 15. There is a one in four chance of passing the disease onto your children. My dad hit the jackpot and passed it on to all three of his kids. PKD cannot be diagnosed early – cysts often don’t appear until you are in your early 20s and sometimes not until your 30s. The only way to detect them is by ultrasound.

Almost five years ago,  my older sister had a successful kidney transplant at the age of 46. So far, I’m doing okay. My kidney function is still relatively good and my Nephrologist (kidney doctor to you) is optimistic that a drug will be invented within the next 10 years to suppress the growth of the cysts. If he can keep my kidney function on the exceptionally slow rate of decline that its currently following until a drug is invented, that would be amazing.

There is nothing you can do per se to halt the growth of the cysts. The main things: don’t dehydrate and keep your blood pressure under control. That’s pretty much it. Not much fun when you think there’s nothing you can really “do” – just be monitored regularly by an excellent nephrologist. Mine is a kidney god. I have complete faith in him. Yay me.

Mostly, though I write this because when I tell people I have this disease (not that it comes up in casual conversation), they seem surprised because I don’t “look” or “act” sick. Not sure how I’m supposed to look or act, but there you have it. I’ve definitely had several scares over the last decade or so. To date, four hospitalizations with acute kidney infections (I’m susceptible to them by the nature of my disease). Not fun, but so far I’ve come through them all.

But, most importantly, PKD is not a disease that you can “see” and therefore is little known. People don’t understand that without a cure or a transplant, or the rest of your life on dialysis (and even that will eventually stop working),  it will kill you. I watched it happen to my dad. Several years of debilitating  dialysis and eventual death. In the United States alone there are approximately 600,000 people with PKD. That’s almost DOUBLE the number of people that have multiple sclerosis, and I bet you’ve heard of MS. Every year 4,500 people in the United States die while waiting for a kidney transplant and many of those have PKD.  That’s a shocking statistic.  My sister is one of the lucky ones. She doesn’t live here and she didn’t have her transplant here.

The number of people who agree to donate their organs upon death (via their driver’s license ID) is negligible compared to those waiting for transplants. But did you know  along with marking that box on your driver’s license you can live with just one kidney? Did you know you can be a LIVING donor? Did you know you could potentially save a life? It’s something to think about.

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So, I write this to make everyone aware of PKD and the need for living donors. It’s hard to choose where to donate your hard earned funds for research. PKD is not well known; it’s not cancer; it doesn’t have visible symptoms; there are no pink ribbons or yellow bracelets or massive advertising campaigns,  but people DIE from it and the more money that can be donated for PKD research brings us one step closer to finding a cure or at the very least a drug that can stop the growth of the cysts and eventual renal failure.

As  I said, my sister is one of the lucky ones. My father and his father weren’t. I hope that I will never need a transplant or that my brother won’t either, or that at the very least we’ll be able to get a transplant when the time comes, before it’s too late.

If you live in the United States and you’d like to learn more about PKD please click here and visit the PKD Foundation. You can also donate to the foundation and find out about PKD Walks in your part of the country.  And if you’d like to learn more about being a living donor please click here and visit the National Kidney Foundation.

If you live outside the U.S. there are PKD Foundations in other countries, too. Do a simple Google search and you should find them.

Thank you.

3 comments

  1. jtailele says:

    You are right. I never heard of PKD but I was aware that a lot of people are waiting for kidneys. I am glad to know that you are feeling fine right now and I hope that continues. Every family seems to have some burden they must carry. I hope this post gets lets of donations for the PKD foundation. I plan to make mine today. For our family, it is Juvenile Diabetes. My grandaughter has it, and like you is waiting for the day they find a cure. God bless you.

  2. I am aware of PKD due to my profession, but I have never listened to concerns or quality of life issues of my patients since I only deliver their anesthesia and prevent any further kidney damage as a result. Thank you for sharing your story and promoting awareness.

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