Ben’s Story

Written by Ben Lokos

I have been trying to compensate with this disease for 18 years. My first run-in with Cystinuria was on my 16th birthday, while playing golf. My left kidney shut down and the doctors threatened me with open surgery unless I could pass the stones, which I subsequently did.

Eight years later at age 24, I had developed a huge staghorn on the left side that created a blockage to my left kidney. A percutaneous was performed at this time but I needed to stay in the hospital for four more weeks in order to dissolve the 30 smaller stones that remained after the surgery.

Five years later, at 29, I again had developed a staghorn on the left side. This go around it took two percutaneous and one lithotripsy to get rid of all the stone material. This time I was sidelined for only two weeks in the hospital, but I had become very weak.

Four years later, at 33, I again developed a staghorn on the left side but this one was smaller than the other one had been. This time I had a ureteropyloscopy performed which was successful in getting to all the different calyxes in the kidney. I also developed a small stone in the right kidney which caused intense pain in the right ureter. This stone passed on its own, followed by another.

Unfortunately, no matter what I seem to do I still develop staghorn stones. However, during the last 17 years I have developed a “learned helplessness attitude” toward this illness. Every time I seem to be slowing down the production of stones, they seem to return. Do any of you feel this way?? I know that some Cystinurics have experienced greater hardships than I have described. Yet let’s face it – this is NO PICNIC.

I now treat the condition very seriously as it has also caused me to have extremely high blood pressure. (180/130) All along I was drinking 1-2 gallons per day, as well as taking 60 mgs of Polycitra-K crystals during the night.

After the last surgery was done, I discovered a natural way to alkalinize my urine, by drinking wheat grass juice, and chlorophyll. I am also taking d-penicillamine which I gradually adjusted to. My nephrologist (Dr. Zackson) recommended a desensitization schedule until I am able to tolerate a therapeutic dose. The reason for the desensitization to Cupramine is because I am allergic to Thiola and Captopril and developed hives with Cupramine when I originally took it. An allergist recommended taking a tweezer-full at a time for two months until I built up to one pill. After 2 more months I built up to three pills.

In closing, I have discovered that by drinking the wheat grass juice, I am better able to adjust to alkalinizing the urine and actually derive tons of energy. I know that I will beat this condition and not let it get to me, and I think we all need to maintain a positive attitude!

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