Evan's Story, Chapter 21, A Lingering Threat

A Lingering Threat

Yet man is born into trouble, as the sparks fly upward.

I would seek unto God, and unto God would I commit my cause:

Job 5, verses 7-8

   Our excitement for Evan’s increased stamina was bolstered by an incredible increase in his appetite. As a young child, his appetite was poor. When he turned thirteen, he only weighed 46 pounds. There was now a complete reversal of his appetite problem. Evan was eating like a teenager.

   This excitement was tempered by a harsh reality. Evan’s kidneys were still not working well. If anything, his kidneys were degenerating. The renal tubular acidosis (RTA) was not the only problem. The Nephrocalcinosis never went away. If anything, it seemed worse. We had unpleasant questions for the nephrologists. Why are the kidneys getting worse now? Is he a candidate for a kidney transplant? Are we only putting off the inevitable? The thought of losing Evan after the extended agony of the spinal fusion operation was depressing.

   The answers didn’t help much. “No one knows why his kidneys are so bad. No, he is not, nor ever will be, a candidate for a transplant. He has far too many health issues. But we will follow Evan’s condition through blood tests and renal ultrasounds.”

   After a few years, it appeared his RTA may have been diminishing. Less medicine was being prescribed. Then another dragon reared its ugly head. Evan was having kidney stones, which would suggest something else was wrong. One possible explanation was provided by an ultrasound. The ultrasound seemed to detect a condition called “hydronephrosis.”

   Hydronephrosis, according to Wikipedia, is literally "water inside the kidney.” “It is caused by some obstruction that prevents urine from leaving the kidney. Blocking the flow of urine will commonly result in urinary tract infections which can lead to the development of additional stones, fever, and blood or pus in the urine. If complete obstruction occurs, kidney failure may follow.” 

   This threat to his life was supposed to have been eliminated by the bladder surgery when he was eighteen months old. But if the obstruction was internal to the kidney, hydronephrosis was a real threat again. By the way, Evan had a history of urinary tract infections.

   In late November of 2004, Evan submitted to another endless round of blood tests and a renal ultrasound. The results were sent to Lucille Packard Hospital’s Dr. Yorgin. In early December, Evan, Cindy, and I were in Dr. Yorgin’s office, ready to discuss all of these kidney problems.

   The first thing he told us was, “The ultrasound shows a cyst on the left kidney. It is harmless, but sometimes may be mistaken for hydronephrosis. There is no other indication of hydronephrosis.”

   “Wow,” I said, “That’s one less thing for us to worry about.”

   “That’s right,” he replied.

   At this moment, I noticed something strange. He was smiling. In seventeen years of talking with nephrologists, they never smiled. They were always delivering sobering facts. For a second, I wondered if he was being condescending to me for my remark. No, he was actually being very respectful. He was smiling because he had more good news.

   “There is no longer any indication of Nephrocalcinosis in either kidney. Also, the lab report states that there is normal kidney function.”

   I was incredulous. I read the report myself. “Normal kidney function?” No. This is Evan were talking about. He’s seventeen years old, born with a kidney disease. The phrase “normal kidney function” has NEVER appeared in any lab report with Evan’s name on it.

   At the time, Evan was taking two medications for his kidney problem. One medicine, initialed HCTZ, doubled as a treatment for high blood pressure. The other medicine, Bicitra, is a particularly disgusting liquid concoction. Rancid lemon juice may taste better.

   Dr. Yorgin continued, “It’s possible he doesn’t have RTA anymore. Let’s cut back on the Bicitra and check again. If his lab work is okay, we can stop the Bicitra altogether.”

   “By the way,” he added, “The mild urinary tract infection is just Evan. If he isn’t otherwise sick with a fever, there’s no problem.”

   Dr. Yorgin was still cheerful as the appointment came to an end. Cindy and I were in an “I can’t believe what we just heard” mood. As we were driving home, the message started to sink in. But there must be some mistake. Evan’s nephrologist is supposed to look us in the eye and state, “Elevated potassium levels are dangerous.” He or she is supposed to call and demand that we rush Evan to the hospital. We should be warned that if his heart goes into fibrillation, nothing could be done.

   Cindy updated Dr. Bravo by E-mail. This good man replied, “Wow, what great news!!! I do believe in divine miracles…Evan is one!!!”

   Evan hasn’t taken that awful Bicitra since January 2005.

   At this time, reality was changing for Cindy and me. It was growing more likely that Evan would outlive us.

Which doeth great things and unsearchable;
marvelous things without number.

Job 5-9