By Michele Schneible
My name is Michele Schneible, and this is the story of how I came to donate one of my kidneys to my uncle Ben.
In 1964, Ben was 26 years old and newly married. During a routine health exam, he discovered that his blood pressure was in the 140s and there was an elevated amount of protein in his urine. Based on the exam results, his doctor told Ben he would be a candidate for dialysis. Many tests later, he was diagnosed with glomeuralnephritis, which caused scarring of the nephrons in his kidneys. Ben managed to avoid dialysis for 36 years until eventually he noticed that with the slightest exertion, he would lose energy immediately, his heart would pound rapidly and he would vomit.
Ben thought he was actually having heart failure, but thorough testing proved it was his kidneys passing the threshold of their function, and he finally needed dialysis. After Ben started peritoneal dialysis, he was then put on the transplant list in 1991. In January of 1993, he was approved for a transplant and received a cadaver kidney. But there were complications within the first few years due to renal stenosis. After that, Ben had no other problems and managed to have 17 good years of kidney function. But much to his dismay, after 17 years, his transplant kidney began to deteriorate. He then went back on continuous dialysis, hooked to a machine he had at home for eight to 10 hours a night while he slept.
‘We All Felt Scared’
Being over 70 years of age with rapidly declining health, Ben thought he had as much chance of getting of another kidney as he did of winning the lottery. He had no energy, anemia, shortness of breath and an overall feeling of depression. He was in and out of hospitals more than he was home, he barely had the strength to walk and he was down to 117 pounds. We all knew we were losing him. My parents, who live in Arizona, planned to fly into Chicago for Thanksgiving that year to spend with Ben, guessing this holiday might be the last time they see him.
We all felt scared, calling each other and wondering just how much longer Ben had left and how poor Auntie Sharon, his wife, was holding up. The feeling of helplessness was overwhelming. It seemed unjust to see a man who was a productive businessman, loving husband, good father, adored grandfather and best friend slipping away from us.
I found myself constantly re-evaluating my life as Ben’s was fading away. What had I done? I was 41 years old, divorced with no children, and I’d been working at a dead-end job for the past 13 years. I listed all the “nevers” in my life, and I started to feel pretty insignificant. I wanted to make a life-changing difference not only for myself, but for another person. Then it hit me like a ton of bricks: I wanted to be Ben’s living kidney donor.
Not the Charitable Type
Because Ben’s condition was slipping fast and he was extremely weak, I didn’t want to rush up to him, wave my arms and shout, “Want my kidney, Uncle Ben?” I was afraid the excitement would put him right back to the hospital. So I had my mother call him, and from sister to brother, she gently told him what I was offering: a new kidney. He was stunned; it was the last thing he expected … almost as if he had won the lottery. He was so moved that he mustered up the strength to call me; his voice barely audible, he thanked me.
I have to admit, I’ve never been a charitable woman at heart. I never walked for a cause, I never volunteered at a soup kitchen, I never gave my old clothes to charity, and if a solicitor calls my home looking for donations, they instantly get a click and a dial tone from me. The most altruistic I’ve ever been in my life is simply braking for small and furry creatures on the road. But when my Auntie Sharon and Uncle Ben made a heartfelt toast at the Thanksgiving table, surrounded by our family and friends, and thanked me for the gift I was giving, it was the most rewarding feeling I’ve ever experienced.
My Aunt Sharon set me up straight away with the Rush University Medical Center Solid Organ Transplant Program, the same facility that performed Ben’s first transplant. I was put into contact with Rush’s fantastic Living Kidney Donor Coordinator, Richard Reyes, and he started me on the path to see if I was a viable donor candidate. The first blood test I took was the most important and exciting of all, because I found out that my blood type matched Ben’s — so already I felt we were all on the road to Kidney Donor City! I was ready to be opened up, have my kidney yanked out — come and get it, fellas! But Richard, always the calm and logical one, kept me grounded when I got ahead of myself. Over the next few months, I must have peed an ocean in little plastic cups. I had so many blood tests that I was about ready to invest stock in syringes. I had a CAT scan, mammogram, EKG — you name the test, I had it. I can actually recognize my body better on the inside than the outside, and I can read a lab report better than any first year med student!
Honestly, I didn’t get discouraged or irritated from all those tests, because as Richard put it, “It’s more important to make sure you’re healthy enough to function with one kidney than it is to make your uncle healthier by taking yours.” Because Richard constantly reminded me of that, I had absolutely no fears — well, except for one: What if I wasn’t a viable candidate? I worried endlessly about the possibility of having to break terrible news to Ben and the family that Ben wouldn’t be able to get a new kidney.
In addition to all the tests, I met with two social workers from Rush to make sure I knew everything about what to expect before, during and after the operation. The social workers made sure I had a support group to care for me, and they let me know, just as Richard had let me know dozens of times, that I could back out anytime I wished — even if I was on the gurney on the way to the operating room.
Rush made it a professional and yet such a positive experience for both me and Ben. They did everything they could to make sure the procedure was a success. After the last test was done, I was finally approved. FINALLY! I was elated! Ben’s strength was improving by the day, and once the transplant surgeon, Dr. Edward Hollinger, determined that Ben was well enough for surgery, the procedures were scheduled.