“I am among the first group of quads that are living a normal lifespan,” says Bob Clarke, 50, who became a C8 quadriplegic at age 13 in 1972. “It’s scary and sad, but when I was in rehab, I was told that I only had about 10 years to live, and I went through life thinking that way. Every 10 years, I celebrate!”
When Clarke was injured, bladder management was in its infancy. Renal (kidney) failure was the leading cause of death for people with SCI. In rehab at Rancho Los Amigos, Clarke was voiding on a regular basis, so a condom catheter and leg bag was deemed a good management option. In reality, it wasn’t. Clarke’s spastic bladder and tight sphincter caused reflux — urine backed up through his ureters into the kidneys, causing kidney damage, but with no symptoms. Eventually the reflux blew out the one-way valves that let urine pass from the ureters into the bladder. Bacteria now had a clear pathway back to Clarke’s kidneys.
When Clarke was in college at USC he started getting kidney infections requiring hospitalization and IV antibiotics. “I probably got the infections because I was young and stubborn and trying too hard to be ‘normal,’ carrying a full load and adapting to an inaccessible environment,” Clarke says. “USC didn’t have many accessible restrooms then, so I wouldn’t drink fluids during the day, which probably made things much worse.”
The infections became more frequent. By his senior year he would be in the hospital on IV antibiotics for 10 days, back to school for 15 days, then return to the hospital. “I realized it was either quit school and stay alive, or continue and die.” Clarke left USC one semester short of graduating, but there was a silver lining. While there, he started dating Diane Kessler.
After college, Clarke focused on getting healthy. In 1981 he had a sphincterotomy, which reduced the reflux. He started recreationally pushing a racing chair to get physically fit, paid attention to staying hydrated, and focused on managing stress. The combination worked, and he had only a couple of kidney-related hospitalizations over the next 20 years. But the damage had been done.
A Tale of Two Kidneys
Bob and Diane married in 1989. Ten years later they were living in Plymouth, Minn., where Bob worked in reimbursement and research for Otto Bock and Diane was a paralegal for Medtronics. In 2000 daughter Sara joined the family.
Things seemed to be going well, but Clarke’s kidneys were getting progressively weaker. In 2004 a routine test showed his kidney function had decreased to 20 percent — 15 percent is considered kidney failure. He was referred to a nephrologist — a kidney disease specialist.
In addition to cleaning waste from the blood, kidneys control the body’s fluid volume, mineral and electrolyte balance, regulate blood pressure and tell the bone marrow when to produce red blood cells. “I had been feeling run down for at least 10 years. At least my failing kidneys explained why,” Clarke says. “Also, because of the kidney trouble, I was always cold — not a good thing living in Minnesota.”
The nephrologist put Bob on a program of blood pressure meds and erythropoietin shots — to stimulate red blood cell production. “Thanks to the nephrologist I felt normal for the first time in at least 10 years,” Clarke. “This allowed me to stretch a couple more years mileage out of my kidneys.”
But by 2008 Clarke’s kidney function had slipped to 12 percent. “I was feeling sick, tired and cold and couldn’t concentrate,” he says. “When you’re trying to function on only two-thirds of your blood and that blood is full of waste and uric acid, you feel pretty crummy.” The nephrologist said it was time to start planning for a kidney transplant.
In high school a friend of Clarke’s had died during an unsuccessful kidney transplant, and later his mom died after going through dialysis and an unsuccessful kidney transplant. “The idea of a kidney transplant scared me to death,” he says. “But I had a wife and a daughter and I was ready to do whatever I had to do to stay alive for them.”
The feeling was mutual. Diane told Bob she wanted to see if she could be his donor. “I knew how scary this was for Bob,” says Diane. “I also knew that having a live donor gave Bob the best chance for success. I wanted to do this for Bob and for Sara because she needs both parents.” They went through a series of blood tests and found out they were a match. “When we found out, we had a good cry,” says Diane.
But Clarke’s urologists were against the transplant. They advised him to go on dialysis for the rest of his life. For Clarke this was unacceptable. He sought a second opinion at the University of Minnesota Medical Center. “Things at UMMC were completely different. They saw that I knew my body better than anybody,” says Clarke. “They agreed that a kidney transplant was the way to go, plus their transplant doctors and urologists work as a team to do the surgeries.”
Due to extensive damage and infection, both Clarke’s kidneys would need to be removed. Plus, his spastic bladder was still an issue, so it would have to be removed as well. Two separate surgeries would be required.
To the Brink … and Back
On Feb. 9 Clarke had his first surgery, a massive eight-hour procedure involving a team of 10 surgeons. The nephrectomy proved to be difficult. The years of infection had created scar tissue and adhesions that needed to be cut away. Then they removed his bladder. Finally, they performed a urostomy to replace the bladder — removing a section of the small intestine and creating a stoma just above his bellybutton, where a collection bag collects urine.
Although successful, the surgery hit Clarke like a knockout punch. “Coming out of the first surgery, I really felt like I was going to die,” he recalls. “I was miserable, had bouts of dysreflexia, I was nauseous and couldn’t hold down any food.” Clark is a very tough, stoic person, but recovering from the surgery pushed him to his limits. He was in intensive care for three days, and although doctors wanted him to get out of bed as soon as possible, he was so wiped out it took him six days to get up. “There were times I felt so bad I may have just given up, but having a wife and a daughter counting on me being there, plus all the support from my friends, gave me the strength and drive to hang in there.” He gained the strength to leave the hospital after 10 days.
Over the next three months, Clarke had dialysis on Mondays, Wednesdays and Fridays. The four-hour procedures were hard on him. “I felt like the life was getting sucked out of me,” he says, “like I was teetering on the brink of passing out, and it made me nauseous. I felt like that during the entire procedure.” Clarke says that the others undergoing dialysis didn’t seem to feel like this. Some were sleeping, and others were watching television. But he did notice that nobody talked. “It was probably harder on me because my kidneys had been removed. Even food tasted different. Everything had a metallic taste. Sweets were too sweet, salty stuff was too salty and any kind of preservative made me sick to my stomach. I couldn’t go near a fast food place or I’d vomit.”
Following dialysis Clarke would feel dizzy and physically exhausted until the next day. “Every other day I’d feel exhausted,” he says. He would be home for a few weeks, then develop an infection and spend another week in the hospital. “Mentally it was a really difficult time. So I sought support from a therapist and a psychiatrist, which did help.”
Clarke developed a bacterial infection that left him with constant diarrhea. On days he was having dialysis he wouldn’t eat in order to avoid a bowel accident. “I had no kidneys, I wasn’t eating, I had constant diarrhea and as a final insult, since dialysis filters the protein from your blood, my muscles wasted to the point where I could barely transfer from my wheelchair to the bed.” As he waited for his transplant, time seemed to move at a geologic pace.
On Friday, May 8, Bob and Diane lay side by side in operating theaters and a 12-surgeon team performed their magic. They removed Diane’s left kidney laparoscopically, which only required a 4-inch opening. Bob’s surgery took longer than anticipated because the team had to separate adhesions from the first surgery. The kidney went in just fine and started producing urine as soon as it was attached.
To say the surgery was a success is an understatement. “When I came to, I felt better than I had in 10 years,” says Bob. So good that he got dressed and was up in chair within five hours after the surgery. “It goes to show what amazing functions our kidneys perform,” he says. “For the first time in 10 years my blood was scrubbed clean and had the proper balance to it. We could see this on my lab tests. And I continued to feel better each day.”
In late July, seven weeks had passed since the transplant. For Diane, donating a kidney has had many benefits — her husband is healthy again, and their daughter is happy to have both parents back at home. Diane reports she feels fine, her energy is almost at 100 percent, and she is back at work full time.
Doctors say the first year following any kidney transplant takes a lot of fine-tuning and follow-up. For Bob, there have been good days and difficult days. But even the most difficult days have been better than his best days in the years leading up to the transplant. Since the surgery he has been hospitalized several times due to a plugged ureter. However, his doctors are confident they will solve this, knowing it will require time and some trial and error.
Bob now has to religiously take 18 anti-rejection pills a day. He is slowly starting to regain the muscle he lost during dialysis and has started back at work 15-20 hours a week and says it feels great. His sense of taste has returned to normal and he has a fairly unrestricted diet.
Most of all, he is grateful to be alive and be there for Diane and Sara. And he’s looking forward to many more “10 years as a quad” celebrations.