sirjag

Any stage 4 CKD people here? (or post transplant)Hello All,
My wife is currently stage 4 CKD. Her GFR varies between 15-19. We were supposed to get a transplant from her Father this past April but Covid has squashed that completely until next year sometime.

I'm wondering if anyone here has some experience cycling with Kidney failure. Or have a loved one who suffers from CKD and also cycles.

My lady has started biking every other day for what started out as 20min 1-4mile rides. Now she is doing 10miles (avg speed has increased from 8mph to 11.5mph )every other day and we are both kinda wondering when she will hit the wall and not be able to progress any further...if that is such a thing that is...we simply have no idea what we are in for...

Hoping some can share some experiences, or story's of cycling post transplant.

thanks guys,
JAG

Brad L 

I've had LOTS of experience with this since I had kidney failure in 1984 when I was 22 years old. The kidneys were so far gone when it was discovered that they started me on dialysis almost immediately. One of the things the doctors told me is that I would tire easily (this was before EPO), so I was pretty inactive. To be honest, I was pretty inactive before all this started, but it certainly didn't help. Once I settled into a routine, it was fairly uneventful. I worked 40 hours a week, but on MWF, I would get to work at 8am, leave at 4:30 after putting in my 8 hours, arrive at the dialysis unit, put myself on the machine (I even put in my own 16ga needles), run for 4 hours, get off the machine, then get home around 11:30pm. It felt better to dialyze in the evenings as I could sleep off the post-dialysis fatigue.

Around 1987 I started having trouble with my blood pressure, so the docs put me on BP meds and sent me home with a BP machine to make sure the meds weren't getting my BP too low. I checked my BP one day at work, while sitting at my drafting table, and found it to be fine, but my heart rate was over 100bpm. This let me know that my BP issue was more about fitness than my kidney problem. During this time my hematocrit would vary between 13 and 25, and I would get exhausted just walking across a parking lot. Still, I decided to buy a bike and start riding. Being a complete noob, and not knowing if I'd prefer road riding or mountain biking (mountain bikes were dominant at this time), I decided to buy a hybrid, which rode equally well (poorly) on either terrain. My first ride was a short, 1/3 mile loop in my neighborhood. I got the bike back in my apartment and promptly passed out on the floor, exhausted.

I needed a goal, so I signed up for a 2-day charity ride (Houston to San Antonio) that would happen in October. Being the springtime, I had plenty of time to train. One thing I found is that I would consistently run out of energy at about the 12 mile mark. One day, at around the same mileage, I felt a heart palpitation, letting me know my 12 mile limit was due to potassium depletion. My renal diet restricted my potassium intake, so the little I had was being lost through sweat. I went to a nearby convenience store and, against doctor's orders, chugged a small bottle of OJ. Shortly afterwards, I felt like Popeye after eating his can of spinach. I finished the ride without issue. I discussed the problem with the doctors and nurses, and they would check my potassium levels before leaving on Friday if I expected a long weekend of riding. They'd then check it again on Monday and I never had accumulated too much potassium. I found eating a banana about every 12-15 miles would keep my potassium at optimal levels. When October came around, I wasn't able to complete either day, but I got in 70 miles on the first day and another 50 the second. I was hooked. Six months after I started riding, I no longer needed the BP meds. That winter, I bought a road bike.

I continued training though the winter and into the next year with my sights set on completing the Houston to San Antonio ride. I joined a local club, learned more, rode more, and when October came along, I rode all 111 miles on the first day and 90 miles on the second. Then in 1990, EPO was released to treat anemia in dialysis patients. Though a normal male's hematocrit is around 45%, Medicare would only pay to get it up to 35%, so I was still a bit anemic afterwards, but I had more endurance and speed. I was riding every weekend, and twice during the week. Of course, three of those weekdays was taken up by dialysis. I met a woman in 1993 on a ride who I'd eventually marry, and we just celebrated our 26th anniversary. Health wise, I was doing fine. I'd see those who'd had failed transplants and wasn't interested in putting myself though that. My health eventually needed a bit more normality as my calcium/phosphorous levels were getting out of whack. My parathyroid glands were running wide open, making my body think it needed to balance the levels by sucking the calcium out of my bones. It was time to get on the list. Fortunately, the wait would only be 6 months.

I was scheduled to be a ride starter for Saturday, March 14, 1998. As my wife and I drove out to the start, it was overcast with a slight mist in the air. With neither of us fond of riding in the rain, I got to the start and turned to maps over to another volunteer, then drove home. About an hour later, I got a call that a kidney was available. Had we ridden that day I would have missed the call. We drove to the hospital that evening and I was prepped for the transplant for the next morning. Having a few issues, I spent about two weeks in the hospital, but everything went fine (mostly) after that. Once I healed, and had non-dialysis time available, I tried my hand at racing. I raced for around three years, but due to meds or genes, I was never very strong - but it was great fun! After growing tired of the suffering of long, hard rides, I wound up with a bit of burn-out, so I stopped riding for a few months, but the urge always returns. I've given up racing but still ride for fun.

Several years ago a friend got me involved in coaching the riders of the Texas 4000, a charity ride for University of Texas students who raise money for cancer research by riding from Austin, TX to Anchorage, AK. We usually have a training camp in mid-November, but it's been cancelled this year due to Covid. I still put in around 100 miles per week and got into the vintage bike thing just a few years ago. It's been a journey.

Feel free to PM me if you'd like.

sirjag

Sir, thank you so much for all this detail. Ill share with my wife and come back with more questions I am sure. Again, thanks for speaking up, nice to know she is not alone.

Jag