Awaiting transplant, family rallies with hope

Michael Goldberg’s heart is working just fine.

The University of Washington professor teaches a class on romantic comedies. From “Annie Hall” to “Pretty Woman,” he leads his students on a tour of film’s fondest genre.

What Goldberg needs, however, is a new kidney, and it’s not the first time. His lone kidney is a failing transplant from nearly two decades ago.

It all started when he was a 15-year-old living in Los Angeles. He was diagnosed with Type 1 diabetes, a disorder in which the pancreas stops producing insulin, a hormone that converts sugar into energy. Blood sugar levels rise, causing excessive thirst and urination, as well as potential organ damage down the line. 

Looking back, he wishes he’d taken better care of his body after the diagnosis. 

“I was probably not in good control for three or four years,” Goldberg said. “It was a combination of I was a semi-alienated 15-year-old, and I had ADD.”

A 2.0 senior year GPA didn’t stop him from enrolling at the University of California, Santa Cruz, where he found a good doctor and started to regulate his condition. But in 1986, while earning his doctorate at Yale, he was diagnosed with kidney disease. 

He got married and took a professor position in the Seattle area in 1993. Soon after, his failing kidneys finally gave out.

“I had to go on dialysis suddenly,” he said. “There were a lot of complications, and
it was tough.”

He began going to the Northwest Kidney Centers three days a week for the blood-cleansing treatment, which involves a machine artificially filling the role of the kidneys. Blood is drawn from the body, typically through a vein in the arm, then cleaned and streamed back in. 

In addition to needing a new kidney, doctors told Goldberg he needed a new pancreas. This promised to cure his diabetes, a pancreas-based disease, but ruled out the prospect of a living donor. He was put on the waiting list for a pancreas-kidney transplant in 1995. Just nine months later, he received the organs from a cadaver donor — a recently deceased teenager whose parents wanted their son’s organs to live on.

The new kidney fit right in for 17 years, which is outstanding for a cadaver donation. But the powerful medication that organ recipients must take can eventually be toxic to the new organs.

“Most kidneys fail not because your body rejects them,” Goldberg said. “It’s because you’ve been scarring the kidney through the immunosuppressant drug.”

In fall 2011, the lab results came in: The pancreas was in good shape, but Goldberg needed another kidney.

He went back to the Northwest Kidney Centers, but this time for training rather than treatment. He and his wife, Elizabeth de Forest, learned how to do home dialysis and set up shop in their bedroom in August 2012.

Home dialysis is done five nights a week and takes about five hours a night. De Forest throws on a lab coat and latex gloves and inserts a needle into her husband’s fistula, a surgically created passage where a vein has been connected directly to an artery. The vein is about as thick as a piece of licorice — strong enough to be drawn from night after night.

A preschool teacher by trade, De Forest took the year off to be by her husband’s side. “I’m pretty much on call if anything happens,” she said.

Studies have shown that home dialysis can reduce stress on the heart and improve survival rates. Still, 90 percent of dialysis patients prefer to go to a center. Many cite a feeling of safety that comes with having the process done by professionals.

But, for Goldberg, there’s no place like home. He loves having his wife and two sons, Asher and Jonah, around to support him. There’s a flat-screen TV in the bedroom, with boxes of DVDs on one side and boxes of syringes on the other.

“It can be stressful at times but, you know, usually we’re used to it,” said Asher, 14.

“It’s not just him on the machine,” said 12-year-old Jonah. “It’s sort of like all of us.”

Goldberg attends the Reform Temple B’nai Torah in Bellevue, Wash., where he has relied on the clergy as a source of support since learning that the transplant was giving out.

“Even though I was really sick, I was trying to make it for Saturday services,” he said. “My blood pressure was going up and down — people were always looking out for me. But just to be there was so important. I really feel my faith helps me get through this stuff.”

An especially tough stretch came around the time his son Asher was turning 13. On the Friday night of the bar mitzvah, Goldberg was in such terrible shape that he had to leave and lie down. At the following day’s ceremony, though, he got up and danced.

“The bar mitzvah became this remarkable moment,” he said. “It really felt like a blessing.”

Goldberg’s parents, Irving and Esther Goldberg, live in Encino. His father was so touched by his son receiving the first kidney that he started a nonprofit called Transplant for Life.

“I felt I had an obligation to return my expertise in a way that would help increase organ donation,” the elder Goldberg said. “Transplant for Life was based on the mission of increasing donor awareness among the interfaith religious communities in our nation.”

They provided speakers for synagogues, churches and mosques and distributed kits that included sample sermons and prayers. For years they participated in the annual National Donor Sabbath, a three-day observance that encourages a nationwide dialogue about organ donation. This year’s Sabbath ran from Nov. 15-17.

While the transfer of organs can be contentious in Jewish culture, Transplant for Life found wide support.

“We researched all denominations of the Jewish community: Reform, [Conservative], Orthodox, ultra-Orthodox,” Irving Goldberg said. “We had close to an 80 percent positive response.”

The only real resistance came from the ultra-Orthodox, but even there, some approved of the process so long as specific criteria were met.

Transplant for Life was eventually absorbed by the Transplant Recipients International Organization.

The organ waitlist looks a lot different now than it did in 1995. There are more than 120,000 people who need an organ, and about 18 of them die each day. What once took six to nine months can now take up to five years, depending on blood type. For Goldberg, whose blood type is A, it’s two to three years, but he doesn’t even know where he’s at on the list.

The alternative to the waitlist is finding a living donor. Often family members or loved ones volunteer to help out. Goldberg found out the first time around that his close family members have positive cross-matches, meaning his antibodies will reject their blood cells. 

He had a donor lined up last spring, a friend whose kids attend school with his, but doctors discovered a rare condition in her kidney that meant she wasn’t a candidate. 

Donating a kidney traditionally required the removal of a rib. Now there’s a less invasive laparoscopic procedure with improved success rates and recovery time. Research shows giving a kidney doesn’t affect long-term health or lifespan. 

“You never know, there are people now donating kidneys who don’t know anyone,” Goldberg said, referring to so-called altruistic donations. “They just say, ‘I want to donate a kidney,’ and get connected.”

For now, it’s five nights a week on the machine. 

“It can be a challenge,” Goldberg said. “It’s emotional. I think we deal with it really well. You’re dealing with your body — you’re dealing with needles and blood and those sorts of things.”

But like any good professor, Goldberg tries to keep things in perspective.

“I was talking to the cantor a couple days ago. He was saying that for people who have a larger spiritual outlook — whether religious or just based on concern for a larger purpose in the world — it’s easier to fight off the feeling of self-involvement about your condition. Mine is bad, but there are worse things. Look outward. Ask yourself not just why you want to live, but what do you want to do that day in the world? Look beyond yourself.”

For more about Goldberg’s story, visit http://www.caringbridge.org/visit/michaelgoldberg