Size Matters

In the last month or so, the latest challenge to my sense of well-being as a Polycystic Kidney Disease patient has been pants.

Well, not pants precisely, but rather belts. My kidneys have grown so big that my belt buckle digs into me when I sit. And everyone who knows me knows I don’t indulge in ginormous trucker belt buckles depicting the rise and fall of the American steel industry rendered in evocative bas relief.  I feel like the punchline to this antique joke: “I got me Dunlap disease real bad.” “Oh? I’ve never heard of that.  What is it?”  “Mah belly dun lap over mah belt.”

As a result, I reached out to Duluth Trading Company for a pair of overalls. Huge ones, really. I’ve been pretty impressed with DTC – their stuff fits me better than Carhart, and I like their pocket design.  I wouldn’t exactly call them fashionable, however.  They did produce a dramatic improvement in comfort, and that’s always good.  I may look into suspenders, too.

One of the real downsides of PKD and the resulting enlarged kidneys is that my back always hurts.  It’s like being pregnant, except I don’t have a due date, and even if I get scheduled for a transplant, there is no guarantee that the surgeon will agree to remove my bad kidneys at the same time.  The idea that a surgeon might decline to do a nephrectomy simultaneously with my transplant really bums me out.

The back pain been making me sleep poorly, which is tends to trigger a downward spiral — if I’m tired, I don’t feel like doing our usual walk in the hills.  If I don’t get moving, my back hurts more.  So I try to do my stretching exercises before bed, and do the daily walks, even if I’d rather sit at home watching YouTube.  Zina has been instrumental in motivating me to stay active.

In other news… I’ve been attempting the Walser Diet, which is, in a nutshell (or rather a rice cracker wrapper) ultra-low protein with amino acid supplements.  The diet is basically Vegan, except without the good stuff.  Seriously.  Who knew there was good stuff in a Vegan diet?  No gluten (which is a protein), no nuts, no beans, no tofu, restricted corn, restricted leafy dark green veggies.

It mostly winds up being squash, potatoes, cauliflower, lettuce and rice.  We purchased the low-protein cookbook “Apples to Zucchini“, and that has been quite useful: we’ve found at least one recipe which I will continue to make regardless of my kidney status.  The primary author paired with an adventurous cook to create some more enjoyable cuisine.  The primary authors previous cookbook from the ’80s was uninspired, flavor-wise, and I don’t recommend it.

But the truth is that while I can occasionally totally avoid protein in my daily diet, it is an incredibly difficult diet to follow strictly.  In part, because the chewable amino acid supplements are incomprehensibly vile tasting.  Even with the cheating, my overall protein intake has been tremendously reduced from my previous lifestyle.  I can say with certainty, it makes me feel better.  One of my early blog posts mentioned how I didn’t feel mentally agile, and had lost some sharpness or quickness… it has definitely helped with that aspect noticeably.  It’s not going to repair my disease, but it should improve the quality of my life until I get a transplant.

Oddly, despite eating mostly starches, I feel like I’ve been losing weight.  In fact, my nephrologist even commented that I look more slim.  However, the scale has been saying otherwise, that I’ve remained the same weight.  I suppose it’s possible that I *am* slimmer, but any weight loss has been offset by gains in my kidneys.