Written by Joan Miller
My daughter Clarity was diagnosed with cystinuria in May of 1995. X-rays revealed that her kidneys were about three-quarters filled with stones. It was the most severe stones that the doctors at Virginia Mason Hospital in Seattle had seen, especially on someone so young. The kidney tissue itself had been reduced by half, but her kidneys were still functioning fairly well.
She had two percutaneous ultrasonic lithotripsies. The surgeries lasted between four and five hours a piece. On the left side they were able to remove most of the stones from all but one lobe of the kidney and from the right side all but two lobes.
Caring for her in the hospital and for the weeks after we got home was the most difficult for me. She had drainage tubes and bags for each kidney that needed a great deal of attention and were extremely uncomfortable. The pain medication made her nauseated and drowsy. As a teenager it was embarrassing for her to be seen with all the apparatus.
At home we tried irrigating her kidneys for ten hours each night with a sodium bicarbonate solution dripped through the nephrostomy tubes. This was difficult for her as she had to get up very often and wheel the IV pole, bags, tubes, etc to the bathroom. It was stressful for me because I had to keep getting up every two hours to check that the solution was dripping at the right rate. We did it for a week and it made no difference.
She returned to the hospital to go in the lithotripter, but this was ineffective on her hard stones. Later they did another PUL and were able to get most of the stones out of her left kidney.
As of April of ‘96, Clarity has had good results in managing her cystinuria. Her stones are dissolving and no new ones are forming. She follows a complete vegetarian diet with very small amounts of dairy products. This is our diet of choice anyway, so eating a low protein diet is easy for her. She eats very little fat. She uses Polycitra crystals in water once a day. The sodium in the other preparations was making her retain water, and I didn’t like the sugar and dyes. She eats a lot of fresh fruits and vegetables; we prepare most foods from scratch at home.
We no longer use our well water but buy bottled water. To the water I add a solution called “Crystal Energy”, a super-concentrated electrocatalytic mineral solution. It reduces the surface tension of the water, making it a better solvent so that nutrients can be absorbed more fully by the body’s cells. Though I have no clinical proof, it seems to me that this would be useful for her kidneys. She drinks between 8 and 12 glasses of water a day.
Clarity’s doctor is becoming familiar with the holmium laser and plans to use it on the rest of the stones sometime in the next year. These surgeries will hopefully be able to be done through her bladder and ureters instead of percutaneously.
Although is hasn’t been easy to cope with Cystinuria, I am encouraged that the program Clarity is following has been effective.