Apr 16, 2009 Latest post:
Mar 26, 2020
(May 24, 2009. If you happen to visit this part of the site, please know that this is a work in progress. It is not finished)
Starting around 2003 when Chris was 7 years old, he started having some problems with incontinence. We went to see several different doctors about this issue over the next couple of years, but never got any satisfactory answers as to what might be causinng this problem. Some just said that he would outgrow this while others wanted to try this drug or that one. They never did any tests, but as they all seemed to think there wasn't an underlying problem, we kept trying to follow their advice.
In April 2005, we finally came to see Dr. Gonzalez, a urologist. On our first visit to Dr. Gonzalez, he ordered an x-ray and and an ultrasound of Chris' kidneys.
In May 2005, I went back for a follow-up visit to discuss the findings. One of the things he noticed from the ultrasound was the size of Chris' kidneys. His right kidney was significantly smaller than his left. He said that this was not all that unusual and didn't see it as a big problem, but he wanted to run further tests just to make sure. Chris was nine years old.
We really liked Dr Gonzales and continued seeing him. Many tests followed. Our pediatrician, Susan Parkerson, ran some tests on Chris because she thought he had a urinary tract infection. She also checked the protein in his urine. Much to everyone's surprise he had protein in his urine and his creatnine level was a little elevated. Dr Gonzales and Dr Parkerson talked together about these tests and decided it was time for us to visit a kidney specialist and they referred us to Dr Feig.
In August, we saw the nephrologist (kidney doctor, your kidneys are made up nephrons, therefore the name) at Texas Children's, Dr. Feig. Of course, we had no idea what was coming. Michael was in South Africa on a missions trip. Jacque Caldwell, our pastor's wife, went with me. The doctor told me several things about kidney function, that I don't remember. What I do remember was him looking at me and saying, "Chris has lost 75% of his kidney function." I knew that his right kidney was small, so I thought he meant that one was not functioning at 100%. What I soon came to understand was that he only had a total of 25% function between the two kidneys. The left kidney was doing 75% of the work of that 25%. Basically, the right kidney was doing almost nothing.
He proceeded to tell me that eventually Chris would need a kidney transplant. His best educated guess was that the damage to his kidneys was caused by kidney reflux. Kidney reflux occurs when the urine leaves the kidneys, flows thru the ureters to the bladder. The flow reverses and the urine flows back into the kidneys. Once the urine leaves the kidneys it is toxic. So, when it flows back into the kidneys it causes damage, scarring.
Over the next several months, we went thru a battery of tests. Many of them unpleasant and definitely not fun. Eventually, Dr. Feig gave us his prediction for when Chris would need a transplant. Probably around age 16. However, he did make it clear that this was just a guess. He told us that the quicker Chris grew the quicker his kidneys would fail.
His creatnine level slowly crept up over the next few years. His energy level began to decrease and his concentration in school was a challenge.
In February 2008, we began to see a significant change in his creatnine level. By May, it had gone up to 4.0. Because it was moving rather rapidly the doctor decided we should add Chris' name to the transplant list. He was twelve years old. Dr. Feig was wanting this to be a pre-emptive transplant. One where we could avoid dialysis. The desire was to find a living donor.
When Chris was originally diagnosed, several people came to us and asked us to let them know when Chris was ready for transplant because they wanted to be tested. One of those people was Kevin Niemeyer. He had been Chris' Sunday School teacher.
By the time Chris was going to be placed on the transplant list, the Niemeyers had started attending another church, and we never thought to call Kevin and ask if he still wanted to be tested. But soon we received a call from the Niemeyer's asking what Kevin needed to do to be tested. Though not with us each Sunday, Kevin still had the desire to be a donor for Chris.