Just Frances

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Running with PKD

This entry was posted on Wednesday, July 16th, 2014 by Frances Ryan.
Tags: sports, running, pkd, health, food, drink

Disclaimer: I am not a medical professional nor do I have any professional health or fitness qualifications. This story is about my own personal views, opinions, and experiences of being a runner with PKD and is meant as an informational starting point—not as medical advice. Please consult your medical team if you have any questions or concerns about your own health.

Several times a week, people find my blog by searching terms related to running with PKD (polycystic kidney disease), which prompted me to do a wee Google search to see what others have written on the subject. I was surprised to see so little on the topic, so I thought I’d take the opportunity to talk about it. After all, I am a runner with PKD so I have a little something to add to the (limited) conversation.

(Please feel free to share your own experiences, thoughts, or further information in the comments below or in a private message to me!)

Can you? Should you?
I think the most important thing to know about running with PKD is that most people can! However, it’s not fully without risk, in part because of the jiggling and shaking your kidneys may experience, which may lead to cyst ruptures. To that, the PKD Foundation (USA) states that “sports where impact is minimized” are encouraged, though they note that running is lower on their list of appropriate low-impact sports. (The UK’s PKD Charity doesn’t mention running either way, but does recommend “brisk walking”. See their list of recommended and cautioned-against exercises here.)

In my personal experience, my doctors have always encouraged my running (yes, even marathons!) because it helps to keep my blood pressure in check and is a great way of staying within a healthy weight range—both of which are great ways to maintain kidney health. In addition, my diet tends to be healthier and I generally sleep better when I’m in a good running routine. Again, two things that are great for kidney health!

For what it’s worth: At this point, my kidneys are slightly more than double the average size. I rarely have problems with my them and they’re functioning at normal levels for now. My nephrologist thinks that my active and healthy lifestyle plays a part in that, though it’s acknowledged that there’s a level of luck, too. (To that, my active and “healthy living” aunt went into kidney failure quite quickly despite it all. She’s since had a transplant though and is back to the gym!)

Nutrition
But running isn’t just about running, as any runner knows. Proper nutrition and hydration are vital to keeping healthy—maybe more so for a runner with PKD or other medical conditions.

The Internet is filled with (conflicting) advice about the right amounts of carbohydrates, proteins, fats, and more so it’s understandable that a person could get confused. Kelly Welsh, a well-known and highly reputable renal dietician, has provided a good overview of nutritional guidelines for runners with PKD. I recommend you read it and be sure to talk to your nephrologist or nutritionist about your own personal needs.

Personally, if you wondered, I maintain a low-sodium diet (most days!) that’s high in fresh fruits and vegetables, whole grains, and “healthy” fats, and I limit animal proteins. I also limit myself to one cup of coffee (and no other caffeine) each day. And I drink way too much water. (And maybe way too much beer some days. Hey, I’m only human!)

As for hydration—do it! As a PKD patient, you probably already know about the importance of proper hydration and you should be aware that you’ll need to pay even more attention when you’re running.

Be mindful that your nutritional needs may change as the disease progresses and that being on dialysis will make a difference, too. So—again!—be sure to talk to your doctor about your own requirements.

Potential pitfalls
Running with PKD isn’t without some risk. But then again, running without PKD carries risks, too.

One of the concerns with running with PKD is that the jarring motion may cause a cyst to rupture. In my lifetime of running, this has only happened once, and I’ve run a heckuva lot of miles in my 40 years. Is it painful? Heck yeah! But it (likely) won’t kill you. Of course, if you’re someone who experiences regular ruptures, this will be a bigger concern of yours. (It happens randomly to me once every 18-24 months or so.)

There are also issues of chronic pain for those of you who deal with that. (I’m lucky; I don’t.) If you’re in pain already, you’ll have to determine if running is something that you can cope with. You’ll also want to consider how pain medications might impact your running (and the safety of running).

And, of course, there are the more subtle signs you’ll need to watch out for such as blood in your urine which may be a sign that there’s a problem.

I try to listen to my body and if I feel flank pain or any symptoms of an infection coming on, I’ll take a day off of training and hydrate the heck out of my body instead. If I do get a full-blown infection, I take a few days off from running—but try to walk or lift light weights when/if I feel up to it so that I don’t lose momentum.

(Again, talk to your doctor if these are issues for you.)

Obviously, every PKD patient is going to have their own concerns and issues. This is just meant to be a quick overview to help those who have stumbled upon my blog and isn’t meant as a comprehensive discussion.

To repeat the disclaimer from above: I am not a medical professional nor do I have any professional health or fitness qualifications. This story is about my own personal views, opinions, and experiences of being a runner with PKD and is meant as an informational starting point—not as medical advice. Please consult your medical team if you have any questions or concerns about your own health.

And with that, I wish you good health and happy running!

Comments

Hi there!
I’m also a PKD patient 44 years old.. Currently im suffering of high BP after taking a run (i think this is the reason as i did nothing else special these days). Do you think or did someone mention to you such experience? And btw. Thanks for the great article ;)
Regards
Marcel

by Marcel at 3:07pm (GMT) on September 8th, 2015

Hi, Marcel. Thank you for your comment. I am very lucky in that I have low blood pressure anyhow, but I know that some folks have high BP with PKD. As for a high BP after running, I would think it might just be a short-term side effect of the activity (similar to a high pulse rate).

BUT (and this is the important part) you should definitely ask your doctor about it.

Running can be very good for your overall health, and I am encouraged by my doctors to keep at it (two half marathons and a full marathon this month!). However, running can make some health issues worse so it really is important to make sure your doctors are OK with you undertaking such activities.

Good luck and happy running!!
Frances

by Just Frances at 6:34pm (GMT) on September 8th, 2015

Hi!

Thanks for sharing! I have PKD and I am also a runner, and recently I have been having pain, sometimes dull and sometimes shooting in my left flank area. I have been to my nephrologist and my lab work is all normal, so I have been resting and hydrating. From your experience, is that what a cyst rupture might feel like? I have never done a full marathon, I have done 5 half marathons, several 10 milers and 10ks. I thought about trying to do a full this fall and that’s when my pain started, so we’ll see.

Hope all is well with you and that you’re still running! I know this post is a few years old, but I just happened to google search ‘running with PKD’

Take care!

by Sarah at 10:46pm (GMT) on May 15th, 2017

Hi, Sarah. Thanks for getting in touch - and don’t worry that it’s an old post, it’s still relevant and I always love hearing from others!

The only time I had a cyst rupture when I was running was during a 10K race. I had been feeling quite sore but I put it down to the stress I’d been under in the days prior. When it ruptured, there was an immediate “white hot” pain that hit me like a wave. Then I felt a bit sick and very, very sore - as if I’d been kicked in the kidney by an angry donkey. I finished the race (in hindsight, that was a silly thing to do) and I was in pain for a few days after. It was all very similar to the other two times I’ve had a ruptured cyst, only the other times I was not in the middle of running!

As for overall “flank pain” - I do get dull aches from time-to-time. But I’ve found that it happens when (1) I am on the cusp of a major kidney infection or (2) I have not been keeping up with a good diet.

The first one (kidney infection) only happens to me every 18-24 months (at the most; it’s normally longer). And then, I can feel loads of other symptoms so I wouldn’t be evening thinking about running and will most likely end up visiting my doctor for antibiotics.

The second one (poor diet) is generally after I’ve had a few too many drinks at the weekend or when I’ve enjoyed too much sodium-heavy food (and often not enough water). This tends to be a more mild ache and I can normally make it better by drinking extra water and juice (I like pomegranate juice) and eating loads of fresh fruits and veggies.

Without knowing your background or what your kidney function is like (and the fact that I am not a doctor!) it is hard for me to give advice. However, I know that for me hydration and a diet filled with lots of fresh foods helps. Even on a non-running day, I drink about 3 litres of water (most of that in the form of peppermint tea). When I run, I have even more water. And when I am doing a long run (anything more than 10 miles) I am sure to take extra water in the day or two before I run, too.

You might try keeping track of your water/fluid intake for a few days to see where you are. By keeping track, you may find that you’re not hydrating as much as you think you are. (We humans are really bad at remembering what we put in our mouths, but keeping track keeps us aware!)

I use MyFitnessPal to log my food and water. I don’t often log every little thing I eat, but my logging in every day to add my water I find that I am overall more aware of what I’m eating. (I don’t count calories, but I do find it a good reminder of just how many calories are in one Double Stuff Oreo.)

I also use MapMyRun which syncs with my Garmin running watch. That allows me to write little notes about how my run went - right down to any niggly pains I’m feeling or musings about why I might have been faster or slower than intended.

These two things combined means that when I do feel that something “isn’t right” I can look up my history to see if there’s a pattern. So when my labs were a bit off last month (still normal values, just off for me) I was able to see that in the two weeks prior, I was eating a lot of high-protein (and low quality!!) foods whilst also wracking up more running miles and doing an extreme amount of cross training and weight lifting.

I used that information to re-set my eating and exercise habits to my “normal” ways… and magically, my next lab values were all spot-on. AND! I haven’t had any dull kidney aches since then.

So… just something to think about.

I hope you’re able to keep running, as it really is a great way to keep your overall health in check. But do be careful if you have any abnormal pains!

(Sorry for the long ramble…)

All my best,
Frances

by Just Frances at 8:59am (GMT) on May 16th, 2017

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I am a runner with PKD so I have a little something to add to the (limited) conversation.”>