A product of medical advancements

In 1968, I was 2 years old and living in Las Vegas. I was suffering from bloating and uncontrollable high fevers, and the doctors had no idea what was wrong with me. They suggested that my parents rush me to Children's Hospital Los Angeles.

After a battery of tests, the specialists at Children's pinpointed the problem: complete kidney failure. At the time, the cause was a mystery, but I was later diagnosed with hemolytic uremic syndrome, a disease brought on by Escherichia coli O157:H7. The doctors hooked my 22-pound body up to a dialysis machine, which looked like a modified washing machine. The treatment kept me going for several weeks—until the day the tubing burst, and I nearly bled to death. I received immediate blood transfusions.

Ironically, this mishap saved my life. As the blood drained out of me, so did the E. coli, relieving the stress on my kidneys and enabling them to function again.

Although my diseased kidneys fought off dialysis for 10 years, they wreaked havoc on my body in other ways. Mainly, they caused my blood pressure to rise uncontrollably. New medications and a low-sodium diet controlled my blood pressure until I was 12 years old. By then, my kidneys were barely functioning, and I had to go on hemodialysis right away. Shortly afterward, they removed both of my native kidneys.

I didn't do well on hemodialysis because of crashing, cramping, and seizures, so Dr. Richard Fine wanted to try a new therapy called peritoneal dialysis. I was the first child to use this therapy in California. After a couple of weeks, I started to feel better. Peritoneal dialysis gave me a new lease on life and much-needed freedom.

A couple of years later, I was offered a peritoneal dialysis cycler machine so that I could do dialysis during the night and alleviate the burden of repeated exchanges during the day. I started ice-skating a couple of times a week and enjoying more daily activities.

During the next several years, I was fortunate enough to receive a donor kidney not once, but twice—and unfortunate enough to reject both of them almost immediately.

The final blow came when my doctors told me that my chances of undergoing a successful transplant were “slim to none.” I had 98% antibodies and type O blood. During my lifetime, I had received more than 150 units of blood, plus two unsuccessful kidney transplants, and this made finding a negative cross-match almost impossible.

By this time, I was in my late teens and felt as if the rug had been pulled out from under me. Was this the way I was going to spend the rest of my life?

What does the future hold? Using stem cells to grow your own kidneys? Fooling the body's immune system into accepting a transplanted kidney? A mechanical kidney that can be implanted or worn on the body so you don't have to be hooked up to a machine? So much hope!

One day in 1990, however, I received life-changing news. I had been on the transplant list for seven years and hadn't received a single call. My transplant coordinator said a donor had been found, and told me to get to the hospital right away.

Though haunted by past disappointments, I decided to go for it. I was almost 24 years old and didn't want to spend the rest of my life dependent on a machine if I could avoid it. Also, I was born in Las Vegas, so I was by definition a risk-taker.

My third transplant turned out to be a perfect match. Amazingly, that kidney worked for the next 20 years, allowing me the kind of freedom that I only dreamed about as a teenager. Unfortunately, by 2009 it was evident that the kidney was starting to fail. My creatinine had stayed steady at 2.2 mg/dL for 19 years and then started to creep up. I needed more medication to control my blood pressure, retained more fluid, and required erythropoietin to control anemia. I knew what this meant: I would have to go back on dialysis very soon. I would face the same transplantation issues and could spend the rest of my life on dialysis.

Since my goal was transplantation, my nephrologist and I thought that home hemodialysis was the best option so as not to add any extra surgeries to my stomach and 4'10” frame. I was very apprehensive because of my bad experience with hemodialysis. These days the machines are definitely more modern, and even portable. The continuous real-time blood volume monitoring that's now available for hemodialysis allowed me to be more proactive with my dry weight adjustment so I didn't crash or cramp during treatment. This new technology helped me lose some of my fear of dialysis. I also believe that it allowed me to retain quite a bit of kidney function for the year I was on dialysis, since I didn't get to dry. Having experienced several failed vascular accesses in my teens, I was still worried about the possibility of running out of accesses before transplantation. In Los Angeles, the waiting list for kidney transplantation for people with type O blood is 9 years, and I didn't think my access would carry me through.

Luckily, I had a couple of options for transplantation: I was fortunate enough to have friends and family members who were willing to be tested as potential living donors. Paired exchange is a new option for people whose donor may not be compatible with them but is willing to donate to someone else. The National Kidney Registry is the leader in facilitating this option.

Another possibility for people with high antibody levels is desensitization. I fell into that category since I weighed in at 100% antibodies! I didn't feel that my vascular access situation gave me a lot of time, so I decided to pursue this option. I made an appointment with Dr. Stanley Jordan at Cedars-Sinai Medical Center in Los Angeles, and he and his team were pretty optimistic they could perform a transplant for me because I had several potential living donors.

Cedars-Sinai wasn't concerned about blood type or antigens, just the cross-match, which was hard for me to wrap my mind around at first. I'd always heard that in addition to a negative cross-match, antigen match and blood type were critical. It was determined that my stepsister Cyndi was the best match: I had a mild positive cross-match to her that the transplant team felt could be overcome by treatment.

I underwent plasmapheresis, with intravenous immunoglobulin and an infusion of the drug rituximab to desensitize my antibodies to my donor. I responded to this therapy and was scheduled to have my fourth transplant on February 4, 2011.

Luckily, the kidney started working immediately and hasn't stopped since. Three days after surgery, my creatinine was 0.6 mg/dL. All of my laboratory values were in the normal range except for phosphorus, which was low. I was in the hospital for five days and had to take antiviral and antibacterial medication for precautionary reasons for six months. Today, all I take are antirejection and acid-reducing medications. My blood pressure has never been this normal.

I'm being monitored regularly and have been amazed at my fast recovery. My stepsister also recovered quickly and is doing well. The life expectancy for a living donor is the same as it is for the healthy population as a whole. The number of deceased donors has stayed the same, but the number of living donors is increasing annually and providing hope to many people on dialysis, since the waiting list for transplantation is so long.

I've had more than 45 surgeries and lived with kidney disease for 43 years. I'm very grateful for the medical advancements that have allowed me not only to survive, but to thrive.

What does the future hold? Using stem cells to grow your own kidneys? Fooling the body's immune system into accepting a transplanted kidney? A mechanical kidney that can be implanted or worn on the body so you don't have to be hooked up to a machine? So much hope!

Although I sincerely hope that I won't need any more upgrades, I do hope to witness more lifesaving medical advancements that will help people with kidney disease. Scientists, keep up the good work!