Giving the gift of life

By Emily Charrier-Botts INDEX-TRIBUNE STAFF WRITER

It took Joseph Jacobs one day of contemplation before he decided to give his partner of 23 years, Larry Brunke, a life-saving kidney. But he says it was one of the best decisions he's made.

"It was something I could do, prior to that there was nothing," Joseph said. "It was empowering."

The Index-Tribune first learned about the dramatic saga of Larry and Joseph several weeks ago, when this staff writer mistakenly ended up on an e-mail list Joseph was sending to update friends and family about their progress. Captivated by not only the immensity of their situation, but by their obvious love for each other, we knew it was a story that begged to be told.

Five years ago, Larry was diagnosed with kidney failure. He immediately began dialysis, getting hooked up to a machine that did the work of his kidneys for five hours a day, three days a week. Suddenly, the couple could not travel because Larry's insurance would not cover dialysis at clinics in other states - every decision had to be based on Larry's medical schedule.

"I had to drive a lot," Larry said, explaining that there are no dialysis clinics in Sonoma. "A lot of people can't (drive) with my condition so I counted myself lucky."

But still, the couple yearned for more freedom. They began to explore their options, which came down to dialysis or transplantation. The pair attended a workshop at Stanford Medical Center where they learned about treatment plans in a group with other families facing similar decisions.

There, they learned that most transplants come from a cadaver - typically a stranger who has died whose family has agreed to save lives by donating their loved one's organs. On Thursday, there were 87,649 Americans on the transplant list waiting for a kidney - far exceeding any other organ need, according to the United Network for Organ Sharing.

Individuals can wait up to 10 years for the right genetic match. About 3,000 people die each year waiting for a kidney match that will never come.

At Stanford, the couple also learned about living donors, where a kidney is harvested from a live person, most often a family member or friend. Individuals can easily live with one kidney, experiencing no long-term adverse side effects after the surgery is complete. Joseph got to thinking. While Larry was undergoing testing, Joseph asked a nurse if he could be tested as Larry's living donor.

"The nurse looked at me and said, 'Normally, we don't do this, but you two seem so compatible I'm going to go ahead,'" Joseph said. "At the end of the day she looked at me and said, 'You two are an exact match.' It was a mind-blower."

Joseph needed sometime to process the news. He took Larry home that night but did not tell him what he had done.

"It was kind of a 'Be Careful What You Wish For' scenario," Joseph laughed.

By the next morning, he knew what he wanted to do. He told Larry he wanted to give him a kidney. It was as simple as that - the pair immediately began preparing for the transplant, where one of Joseph's kidneys would be put into Larry's body.

"We had to work for it," Joseph said. "It's sort of like climbing Everest in a way. You get the idea of it and it sounds good, but you don't just show up and climb."

Larry needed to lose weight to be eligible for the procedure, while Joseph underwent rigorous health screenings, similar to those astronauts endure before boarding a space shuttle, to ensure his body could handle the surgery. The couple found solace in a transplant matching website that offers moral support to those preparing for the procedure.

"It's sort of like Match.com," Joseph said with a laugh, explaining that they found a gay couple in Texas who had the exact same experience 10 years ago. "(The donor) told me 'Why wait? Just do it.'"

In 2010, they were finally ready. On Nov. 23, they checked into UCSF Medical Center for back to back surgeries. At first, both seemed to be a resounding success. As predicted, Joseph felt like he'd "been hit by a truck," following his surgery while Larry felt better than he had in years, now that his body had a properly functioning kidney.

"I walked down the hall to his room the day after the surgery," Larry said. "They say the recipient feels better first."

But as Joseph got better, Larry got worse. Doctors discovered that a complication that occurs in 5 percent of transplants had hit Larry. The connection on the line that sends urine through the kidney had failed, and Larry's abdomen was filling with urine. Another surgery and weeks of recovery were required.

"That was really depressing," Larry said, adding that he was released on Christmas Eve. "I insisted I wouldn't be there for Christmas."

Joseph, meanwhile, was recovery nicely from his surgery. Aside from annual physicals, he'll require no long-term medical care. "You have two (kidneys) and there's a reason you have two. Missing a kidney isn't really something you need to adjust to. You have to avoid stressing the one kidney you have, so no more football," he laughed.

As the pair recovered, they relied on the home health care program at Sonoma Valley Hospital, which regularly sent nurses and physical therapists to the couple's home to help out during the recovery process. "It was tremendously helpful, especially because I was recovering as well," Joseph said.

Larry continues to improve with Joseph's kidney. While he takes 50 pills a day to keep his body from rejecting the foreign organ, and makes twice weekly trips to the kidney clinic at UCSF, he has the freedom back he lost to years of dialysis. Recovery is slow and steady for both men, but Joseph, a longtime musician who uses the stage name "Joe Chaplain" (inspired by his volunteer work as a chaplain with Sonoma County law enforcement), is already planning his return to the stage, set for March 10 at the Olde Sonoma Public House.

Live organ donation is growing in popularity, with more and more patients receiving life-saving kidney, liver or tissue transplants. Many hospitals are even organizing multiple organ donation "trains."

In this scenario people in need of new organs, who have willing donors that are not a match, are grouped together so that, for example, person A can donate to person B and in return, their loved one gets a matching organ from another donor in the chain.

While a vast majority of organ donors are connected to the recipient, anyone can join the living donor registry, offering to save a life by donating a piece of themselves to someone in need. Joseph said the process involves rigorous psychological testing to ensure the donor has the right motives.

"If you're motive is to be a hero, this is not the right path to take," Joseph said. "For people who are healthy and really want to help someone who is not healthy, however, organ donation is a really positive way to help."

Learn more about living organ donation at www.unos.org or www.kidney.org.