There are over 70,000 people in the U.S. on the kidney transplant waiting list. Patrick Barron, from San Francisco, was one of them. The 51 year old had almost lost all hope of receiving a new kidney after his wife, Tomomi, agreed to donate one of her kidneys to him, only to learn she wasn’t a match. Three other failed attempts of locating a kidney and then being told he was not a match, further dampened his spirits.

Patrick learned about his kidney disease in the mid-1990s. He was the father of two children and happily married. Just years before he and his family moved from Boston to California. Patrick had taken a new job as a Marketing Executive in Silicon Valley. One day, he developed what he thought was the flu. As Patrick puts it, “I was coughing my brains out.” He also noticed blood in his urine. He immediately went to see a doctor. Patrick’s doctor discovered the coughing caused cysts on Patrick’s kidneys to burst causing the bleeding in his urine. The diagnosis: polycystic kidney disease (PKD).

PKD is the most common genetic, lifethreatening disease affecting more than 600,000 Americans. Polycystic means multiple cysts. In effect, PKD denotes multiple cysts in each kidney. These cysts grow and multiply over time, also causing the mass of the kidney to increase. It can also cause hypertension of the kidneys, as well as infection and pain. Ultimately, the diseased kidney shuts down, causing end-stage renal disease (ESRD), for which dialysis and transplantation are the only forms of treatment.

As you can imagine, Patrick was in a state of shock after hearing the news. “Oh my goodness! I didn’t really know what to make of it. But from the doctor’s demeanor, the way he brought me into his office, his tone of voice was so serious. I thought it was the end of the world.” It took Patrick a few weeks to figure out his kidney diagnosis wasn’t a death sentence. According to Patrick, he knew nothing about kidney disease and had never heard of PKD.

Patrick and his family worked together to learn all they could about PKD. In his research, he learned PKD patients live productive, long lives. So he decided to live, be a father, a husband and continue to work. And it was his work that brought on a new challenge. Patrick’s employer asked him to move to Japan for five years to help start its Japanese business. Afraid of leaving the safety American hospitals provide, Patrick was hesitant to accept the assignment. But a friend put him in contact with a woman in Japan whose husband had a chronic illness. She convinced Patrick he would receive excellent medical care should he move. So Patrick packed up and moved his family to Japan.

After a stint in Japan, Patrick moved back to California. At one point he was seeing his doctor once a year. And then his nephrologist asked to see him every six months. Patrick’s creatinine level kept increasing. So his doctor increased the visit to once a month, and then twice a month. “That scared the daylights out of me! He told me to start thinking about talking to family members about being a donor.” Patrick’s wife, Tomomi volunteered to be a donor. Unfortunately, she wasn’t a good match and his parents were not candidates because of their age.

Asking for a Donation
“Everything a person could do wrong in terms of asking someone to donate an organ, I did wrong,” says Patrick. He says he was very close to his brother. He and his sister did not have a close relationship. But still, he approached his sister first. “She freaked out about the whole thing. Not only did she not want to donate, she wrote a 20 page letter to my brother about why he should not donate! I showed the letter to my nephrologist. He’s a very calm person, but that day, that letter, sent him over the edge.” Patrick’s nephrologist told him the reasons his sister listed in her letter had no validity.

Patrick stayed active on the Internet, researching information about PKD, learning more about kidney transplantation and participating in support groups. It was in an Internet support group he learned about paired exchange donation and Robert Montgomery, MD, a John Hopkins surgeon and a leading proponent of paired donation. In a paired donor exchange, also known as a kidney swap, two kidney recipients essentially “swap” with willing donors. While medically eligible to donate, each donor has an incompatible blood type or antigens to his or her intended recipient. By agreeing to exchange recipients—giving the kidney to an unknown, but compatible individual—the donors can provide two patients with healthy kidneys where previously no transplant would have been possible.

When Patrick asked his nephrologist about it, the doctor had heard about it, but knew very little about the process. Patrick continued his research and looked for doctors and hospitals willing to work with him and his wife. And his tenacity paid off, so he thought.

Doctors did find another couple willing to swap kidneys with Patrick and his wife. However, as the date of the operation got closer, the pair decided not to go through with the operation when a family member offered to donate a kidney. Months later, doctors would find another pair willing to swap, but the kidney patient became very ill and doctors could not perform the operation. And then a third opportunity went sour when doctors discovered a medical condition in a woman willing to swap a kidney with Patrick and his wife. Patrick had all but given up on finding a match.

Not only had Patrick seen three opportunities for paired exchanged donation come and go with no results, his health had taken a turn. He had to be placed on dialysis. “I had read a lot about dialysis and the mortality rate, which Kris Robinson (AAKP Executive Director/CEO) had testified before Congress about. I heard horror stories. When it finally came, I went into a bubble.” [Editor’s Note: To read Kris Robinson’s Congressional testimony, click here.]

The Transplant
Patrick continued on dialysis for six weeks before his dream became reality. Without Patrick or his wife knowing, his nephrologist went through his own database of patients to see if he could come up with another pair compatible with Patrick and Tomomi. And he found a pair! The nephrologist made sure there were no extenuating circumstances before telling Patrick about the possible match.

So here’s how it worked. There were three couples. “Each of the three donors went to surgery at nine o’clock in the morning,” said Bill Bry, MD, California Pacific Medical Center Kidney Transplant Center Director. “And then the kidney from each of the donors went to the person that they were compatible with, but didn’t know.”

The couples came from Half Moon Bay, Calif. (Patrick & Tomomi), a couple from Peninsula, Calif., and the other couple is from Maryland. Patrick’s wife donated a kidney to the wife in Maryland. The Maryland husband donated a kidney to the Peninsula wife. And the Peninsula husband gave a kidney to Patrick. Three-way kidney swaps have been done before, but this situation is unique because one of the kidneys was flown all the way across the country to Baltimore. According to Dr. Bry, “Up until now, all living donor transplants were done in the same hospital with the kidney being moved from one operating room to another. This is the first time a kidney is being sent across the country to be transplanted into another recipient.”

Both Patrick and his wife, Tomomi, are doing great. Patrick is sharing his story with anyone who will listen, hoping to spread the word about paired exchange donations. “There have been doctors and nurses that I talked to, shared my story with and they say, ‘Well, I didn’t know that sort of thing was possible.’ The reality is that there are not a lot of people who know about paired exchange. I hope to help get the information out there.”

Jerome A. Bailey is the AAKP Communications Manager and Editor of aakpRENALIFE.

This article originally appeared in the May 2008 issue of aakpRENALIFE.

Back