This is a shared story of a kidney donor and recipient told through the eyes of both participants who are related through the marriage of their children but were brought closer together because of a paired kidney exchange.
When I first met Sebrenia, I was impressed with this kind, godly yet fierce woman who was to be my son’s mother-in-law. I saw her ability for compassion and kindness toward others. We connected immediately, and she has since become a dear friend. In fact, we call each other sister-mom since there is no term for our relationship, and as we share our children now, and love each other as sisters, this seems fitting.
As I got to know Sebrenia, I learned that this amazing woman was being hindered by her lack of a functioning kidney.
To manage my kidney disease for the past 13 years, every Tuesday, Thursday and Saturday for three hours and 15 minutes I needed dialysis treatment. I also had to incorporate a renal diet into my lifestyle, which included many food restrictions. As a dialysis patient I had to adhere to no potatoes, cheese, milk, chocolate, dark-green leafy vegetables, beans, cornbread, bananas, tomatoes, orange juice, colas, ice cream, peanuts or products with nuts.
These foods are high in potassium and phosphorus and could be detrimental to the heart and bones of a person with limited or no renal function.
In retrospect, it seems like it was the dark ages. When I was a medical resident at Rush in the mid-’70s, hepatology had few therapies and even less ability to change the course of chronic liver disease.
We had neomycin for hepatic encephalopathy (a complication of advanced liver disease that affects your behavior, mood, speech and other neurologic functions); corticosteroids for autoimmune hepatitis (liver inflammation), and diuretics for ascites and edema (swelling in the abdomen and legs). That was about it.
However, I was fortunate to have three attending hepatologists (unusual for any medical center in those days): A.W. (Bill) Holmes, John Payne and Richard B. Capps. I was struck by how smart they were and how they could glean so much information from a patient’s history and physical examination. Perhaps as important, each had a sense that liver disease would continue to grow as a specialty, and that bright new things were on the horizon. How right they were.
After falling ill and urinating blood at age 16, Tim Guimon was diagnosed with IgA nephropathy — a kidney disease that causes inflammation and interferes with the kidney’s ability to filter waste from blood. He also learned that he was born with one kidney smaller than the other, and that these conditions could cause issues throughout his life.
“At that time, though, I didn’t have any major symptoms,” Tim says. “My doctor said I was doing fine, but warned me that it would probably progress as I got older. So for about 10 years, I kind of neglected to think about my kidneys.”
But when he was 26 years old, Tim’s wife, Kerstin, noticed that his legs were unusually swollen. Though he initially didn’t think it was a big deal, Kerstin and his mom, Sandy, encouraged him to see a doctor to determine if the swelling was related to his kidneys.
When Michael Ryan started his own software company, he was thrilled. But the joy of building his own start-up was tempered by his deteriorating health. He was shocked when his local physician diagnosed him with cirrhosis of the liver caused by hepatitis C acquired through a tainted blood transfusion. As his liver disease progressed to a point where his local doctors could not do anything more for him, they recommended that he seek treatment at Rush University Medical Center.
Michael was in the advanced stages of liver failure when he came to Rush. His only chance for survival was a liver transplant. As his health continued to decline, he was unable to work. He was in and out of the hospital for consultations, tests and procedures, and he suffered from mental confusion and memory lapses that can occur in the late stages of liver failure.
After receiving a liver transplant in 2005, he bounced back. Yet he faced an ocean of professional and financial debt. “The business was basically running on its own, and that led to a disaster by the time I got out of the hospital,” says Michael. “I had to shut down the business. With that, the insurance company dropped me because I didn’t have employees anymore.”
Michelle Schneible and her uncle Ben (center) with family members at a party on the day before surgery.
Part two of Michele Schneible’s account of donating a kidney to her uncle.
The day before the surgery was a celebration. My parents flew in from Arizona, and my Auntie Sharon hosted a pre-surgery costume party — we all dressed like doctors in scrubs, and I presented them two huge red velvet cakes in the shape of kidneys! Note to all of you: Do not eat red velvet cake before surgery; it can freak out the hospital staff. But the party didn’t end there; it happened the morning of our surgery as well. Rush University Medical Center was so accommodating in allowing us our fun. We took pictures in our hospital gowns and silver berets, smiling for the camera in secluded dressing rooms hours before our surgeries.
From then on, I don’t remember much, to be honest, because I was given drugs to relax while I was waiting to be wheeled into surgery. I just remember the surgical staff hovering over my head, like clusters of happy floating moon faces. They were adjusting my blankets, holding my hand and telling me about how brave I was and a hero. Hero?! Knowing me, I must’ve garbled something sarcastic to say, and then it was lights out.
Michele Schneible with her uncle, a year after transplant surgery
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.
I had become quite familiar with Mrs. M since her husband was placed on the liver transplant list at Rush. He had been in and out of the hospital multiple times for the many complications of liver disease we commonly see. He suffered all of them: life-threatening bleeding from the upper GI tract, ascites, muscle wasting, kidney failure and chronic encephalopathy, or state of delirium caused by the liver’s inability to clear toxins.
Not knowing his age (early 60s), I would have guessed he was 75 or 80. The few conversations he could have made little sense. Some were humorous, even to Mrs. M, who couldn’t help but smirk when he asked the nurse if his dialysis catheter was really a tracking device to prevent him from escaping.
She knew this was not her husband. She probably hadn’t seen the man she knew, the man she married, for six months or so, since before the cirrhosis took over. Yet she spent every day at his bedside. Even when he was well enough to leave the hospital (or more appropriately, not sick enough to stay), a nursing home was not acceptable. She was his 24-hour caregiver. His life outside of the hospital depended on her. It was the least she could do while she waited and prayed for that one phone call. Continue reading →
An organ transplant can only happen if there is an organ donor. When we encourage community members to consider becoming organ donors, we usually begin by describing how recipients benefit from transplantation. Mostly, we talk about the “big” things: a patient with cirrhosis from hepatitis C or liver failure from a Tylenol overdose who doesn’t die, a patient with kidney failure from hypertension who no longer needs dialysis (and statistically will live longer as a result), or a patient with end-stage heart failure who gets to see her children grow up because of a heart transplant. However, we often forget about the smaller but no less dramatic ways that organ transplants affect recipients’ lives.
During my transplant fellowship, I cared for a man in his mid-50s who had been a brittle diabetic since his teens. His diabetes eventually caused kidney failure, and he had to start dialysis. He was listed for and soon received a simultaneous kidney and pancreas transplant. Because of his multiple medical problems, he had a difficult post-transplant course. He had several readmissions to the hospital, mostly because of nausea and vomiting from the damage that diabetes had caused to his stomach and bowel. We all felt that he was a bit depressed that he had not recovered as quickly as we had hoped (and he had expected). Continue reading →