How I Became Kidney Stone Free While Living With Cystinuria.

It's closing in on almost a decade since I was first diagnosed with cystinuria, and aside from this blog and popping into the occasional forum when I was really ill, I stayed away from cystinuria forums and other such online watering holes. I've always been a firm believer in trying to watch where my energy goes and what it goes into. After joining a couple Facebook forums several weeks ago, I became inundated with the energy of overfed, bloated zombies, like ghosts of Kidney Girl's past.

"Drink more water." "Take your medicines." "Don't neglect your disease or your kidneys will fail you later," was one quip seemingly thrown at me when I mentioned my radical way of essentially ignoring my disease and living a stone free life. I think I detected a hint of jealousy or disbelief.

The last time my urologist performed a 24hr urinalysis he said my test results came in at an almost undetectable level, so he made me repeat the results and had me keep the urine unrefrigerated. Same results. He said he had never had a cystinuric patient with such low levels of cystine after 24 hours. My earlier tests had always been highly crystallized.

By the time I found the original pre-Facebook international cystinuria forums, I already had a firm handle on a diet that wasn't working so well for my spirit or my body. Soon my entire body would turn against this soy-based protein I was shoveling into my mouth on a daily basis (which has since made me completely intolerant to soy, just like those who are highly lactose intolerant). I felt lost compared to everyone else. I was also intolerant to cystinuria medications and was ordered to stop taking them immediately and forever after experiencing the worst, stabbing headache of my life after the first night's dose.

Today I am symptom and stone free - something you rarely hear uttered from a cystinuric's mouth. I've been free of symptoms for several years now, but not by accident. Here's how it happened:

First, I moved away from Japan and all of the delicious, decadent meat-based treats it had to offer. I had been newly diagnosed in Japan, so changing my diet was still a challenge. That time period is also when my vegan diet failed me, as I relied heavily on soy which wrecked my system, even after an adjustment period. Looking back, a raw diet would have helped, but I digress.

At the same time, I dumped my lover, Starbucks. Oh, Japanese Starbucks and your special, native whipped cream that is nowhere to be found in the States. I usually drank at least one mocha, peppermint or otherwise on a typical work day. All of that dairy turned me into a stone-making human pachinko machine.

I also ditched energy drinks once I learned that they were plagued with taurine, a.k.a. animal protein. They are kidney death in a can for those with cystinuria. Want more stones in a week? Gulp down this stuff.

Once I returned to the States, I went into a long transitional period with my weight, thinking this bit of excess weight was exacerbating severe chronic pain in my lower back. I tried diet, walking and physical therapy. By the time I became bored with dieting, my natural diet had changed. I no longer consumed dairy products. I still ate chicken and fish, as over time I recognized those types of animal protein weren't nearly as stone producing compared with the smallest quantities of red meat. Once I was firmly set in this new style of eating, my stones diminished, but here's the real kicker: once I lost all the weight I had to lose my stones stopped completely. Once in a great while I'd feel phantom pains and go to the doctor only to return with a diagnosis of 1-2 punctuate stones bilaterally, which would disappear by my next exam.

To this day, so me six years later, I am completely stone free, still eating that same quasi diet. I do not drink anywhere near the amount of water a cystinuric should drink. Even though my kidneys will always have the cystinuria gene, I consider myself in full remission of this disease.

Not once have I ever heard of remission being an option, but here I am, living proof.

I am living proof that weight loss helps more than a low animal protein diet. I've gone from hundreds of small stones in a month to nothing on CT scans. I'm proof that some of us can handle certain kinds of animal-based proteins over others. Plus, the less I obsessed over the disease and the less I listened to what online forum contributors had to say, the more I was able to tune into what my body hated and make personal adjustments. Sometimes going with the flow isn't the best for your personal chemistry.

Self experimentation is a huge necessity. Doctors, even the best and brightest in this field at NYU don't have all of the answers. They try, but not all patients experiment and take their kidney health into their own hands.

Don't give up on yourself or your kids! I believe we can all beat this disease, but it takes guts and dedication. Imagine a life free of stones, ureteroscopies and stents! It can happen.