Staying Fit with PKD (Polycystic Kidney Disease)

If you know me, you know I have something called polycystic kidney disease (PKD).  I was lucky enough to find out on my 20th birthday.  Yes, I said lucky.  Sure, no one wants to hear they have a disease where cysts grow on their kidneys (sometimes other organs), you have a susceptibility to kidney stones, you will get high blood pressure, eventually the PKD will lead to kidney failure and dialysis, and with a little prayer and luck, a kidney transplant, at which point you will be on a plethora of less than desirable medications that while have many side effects will keep you alive.  Nope, no one wants to hear that.  But to find out a young age meant that I could combat it, I could learn more about it, I could use all this extra time to do something, and perhaps take my life a little more into my own hands. I didn’t see it in that moment, but I did soon after.

I’m not going to sit here and tell you that PKD is any different, more, or less than what you might be facing.  We all confront obstacles in life.  Perhaps it’s a bum knee, a bad back, diabetes, anxiety, stress, cancer, PCOS, irregular heartbeats, blood pressure…..the list can go on and on….especially as we age.  I just want to share my story and perhaps it will inspire you to write your own.

When I found out I had PKD twenty years ago I was also told these things:   I should stop playing sports and any form of vigorous exercise, I should not have children, and basically the reason for my back pain was an enlarged kidney pressing on well, everything else.  I was told that anything could make a cyst pop leading to an infection and that I had a lot of kidney stones.  Eeek. THANK GOODNESS I found a new doctor and science got a little smarter.   Because this doctor was basically telling me that my PKD meant I had to stop doing the things I loved, that my dream of being a mother one day was history, and that I should basically live in a bubble and not live my life.  She gave me nothing else…. nothing else.  I remember telling my parents how much I didn’t like her.  I’ve had many doctors since then and I don’t ever settle for less than stellar.  And I make my voice heard about how I want to live my life and what I need from them.  PKD or no PKD.  Just sayin’.

So, the first thing I did when I got my head out of the fog was do a little PKD research.  My research wasn’t great back then, and I don’t ever suggest people just use “Dr. Google” to find their solutions, but throughout the years I’ve seen research and talked with various doctors about my condition and take the input for what it is, knowledge.  Understanding the science as I studied for my certifications was also extremely beneficial.  Here’s what I know is helping me live a better and more fit life with PKD:

Exercise! Exercise! Exercise!

I still can’t believe that doctor told me to stop exercising.  What kind of doctor tells their PKD patients to live a sedentary life style?! (insert eye roll).  I am currently 39 years old.  And while the day might be close, I have managed to keep my blood pressure at a manageable level thus far, without the use of medications just yet.  This is in part because of my exercise!  Because I get active, I move, I enjoy life!  In the American Journal of Kidney Disease published a study in 2011 that stated “several studies suggest that cardiovascular risk factors such as hypertension, inflammation, and oxidative stress may be improved with exercise training” and that “evidence suggests that the risk of remaining inactive is higher.”  Well of course!  There was another study done in rats that suggested 8 weeks of exercise significantly improved creatinine and oxidative stress markers plus more. 

I’m not going to sit here and tell you that you should go out and sign up for the next Iron Man.  In fact, I’ve run 3 half marathons in my lifetime.  One of those I ran with a ruptured cyst (I didn’t know it at the time).  My training (a short run) one- or two-days prior had left me dehydrated and it’s possible that I re-hydrated too quickly with electrolytes, rupturing the cyst (this was the hypothesis).  Because I didn’t know it, and didn’t listen to the signs, I ran that marathon anyway.  The next day, I felt like death.  No seriously, I don’t think I’ve ever felt my PKD like I did that week.  It was the worst and I wouldn’t wish it on anyone, ever.  Although I probably won’t be running any marathons soon, I also wouldn’t change the experience I had.  PKD, or anything else, shouldn’t stop us from living the fullest life possible.

What I’ve learned over the years as it relates to PKD and fitness is that the most important thing you can do is listen to your body.  Our body talks to us in a lot of ways, we just need to tune in and listen to it.  I wasn’t so good at listening back then, obviously.  But I am much better at it now.  If your body is telling you to back off, slow down.  And there are quite a few days where my PKD tells me to chill.  If you are having a good day, it’s okay to challenge yourself a little.  If you haven’t exercised before or in a long time, start slow and work your way up.  And if anything hurts, don’t do it.  It’s as simple as that.  Personally, I’ve a good mix of walking, Piyo, yoga, resistance training and low-impact cardio are what work best for me these days.  I feel better when I’m moving.

Water, Water, Water!

It’s rare that you will see me drink anything but water.  Unless it’s a smoothie, but I kind of eat those.  When they discovered my PKD that was the first thing I changed.  Water, all day, nothing else needed. 

A study done in rats, showed promise, as it relates to the progression of PKD.  The study increased water intake in rats with cystic kidneys.  What they found was that the increased water intake slowed the growth of the cysts and thereby slowing the growth of the disease.  The hypothesis is that the increased water intake suppresses the hormone ADH.  This hormone its one of a handful that work with others to regulate our body’s fluid balance.  It can signal to our brain that we are thirsty.  Some would say when we feel thirsty, that’s our body telling us we are dehydrated.  We shouldn’t wait to feel thirsty basically.  Suppressing this hormone slows the production and growth of cysts because the kidneys are getting the water they need.  This same hormone and drinking of water also play a role in our blood pressure and has been found to have positive affects there as well. I had a scan done roughly 10 years ago, and then again recently, it appears my kidneys haven’t grown much in a decade. Water? Maybe. Genetics? Maybe. But it never hurts to drink more water.

I personally drink distilled water.  Why you ask?  Well, I can’t say I’ve found any science behind this, because I haven’t.  But my aunt’s cat had kidney stones and her veterinarian suggested they give her distilled water.  In short, it worked for the cat.  So, I started going distilled.  The cat didn’t have PKD, I don’t think, but I’m open to try anything. I have been told multiple times, by way of ultra sound and CT scan that I have kidney stones and then when they are done again it is found that I have none.  Again, no science behind this.  But do you want to hear my theory on this? I’ve passed them, but the distilled water somehow clears them out, helps them become smaller?  If you’ve ever passed a stone, you are probably thinking that’s impossible.  All I know is that I had them, a lot of them, and then I didn’t.  So, either God is taking care of me (which I believe to be true regardless) or the water I’m drinking makes a difference.  I drink mostly distilled and add electrolyte water on those exercise days as needed.  I try for 99 oz a day, but I’m happy if I get 70.  But, again, I try to listen to my body.  It always tells me when I’ve not been doing my job with hydration.

Nutrition, Nutrition, Nutrition!

This was one of the first things I researched when I discovered I had PKD.   I found things that suggested red meat protein and caffeine (or any stimulant) increased the progression of the disease, soy protein was found to slow it down, and that the best thing you could do would be to limit your consumption of processed foods and integrate whole foods as much as possible.  There is so much information out there to be found.  Now of course, a lot of this changes when one moves into kidney failure, dialysis and such, but I’m talking about until then.  What can I do right now?  Well, again, for me, it was about taking all the information I learned about PKD while tuning into my body at the same time.  My kids like to tell me that I’m a vegetarian.  They say that because most of what I eat is fruit and vegetables.  Sure, I eat chicken, fish and eggs…. but what fills most of my plate? Vegetables.  I kind of like their take on the word vegetarian – mostly veggies and then a little of everything else.

This same approach might not work for you, I just know it’s worked for me.  And my entire body feels happy, at peace, and healthy when I eat this way.  The times that I have gone against this strategy, either to bulk up on muscle, or recover better, or whatever other reason there might have been, it’s been my downfall.  I feel best when I’m eating mostly veggies and some of everything else.  Do I eat other things?  Of course, I do!  My Instagram is proof that I love a good cookie.  But what I’m sharing is that life is truly about finding one’s own balance.  And while it’s been one heck of a fitness journey – I’ve created a balance that works for me and will continue to do so.

I’ve had a lot of ups and downs over the years. And I’m sure I’ll have some more. But life is what you make of it. I plan to make lots and lots of lemon water! PS - I did become that mama! And I wouldn’t have it any other way!