Waiting for a kidney, he breaks out in song

  • By Quinn Russell Brown Herald Writer
  • Friday, August 29, 2014 12:34pm
  • LifeBothell

Michael Goldberg isn’t letting his tubes hold him back.

The 55-year-old dialysis patient recorded a song while hooked up to an NxStage System One, a 75-pound machine that fulfills the job of a kidney by cleaning his blood.

Unlike most patients battling kidney failure, Goldberg does dialysis in his own bedroom thanks to training from Northwest Kidney Centers.

A professor at the University of Washington’s Bothell campus, he was diagnosed with Type 1 diabetes at age 15. He had a kidney transplant in 1995, which began to give out in 2011. He’s been on home dialysis for the past two years.

“The thing we tell our patients waiting for a transplant is, ‘Tell your story,’” said Joyce F. Jackson, president and CEO of Northwest Kidney Centers. “It’s surprising where people have found donors.”

Back when he had more free time, Goldberg played in a band of UW Bothell faculty and staff called UDubB Jammin.’ He hopes that recording a song will spread the word about his situation as well as teach people about home dialysis.

“You’re more active. You’re at home. You’re with your kids. You’re healthier,” he said.

The song, “High,” is about a guy who’s doing so well — who’s so “high” on life — that he’s just waiting for the inevitable moment when he’s brought back down.

“What you learn when you face repeated challenges is that you really have to keep balance,” Goldberg said. “People always say, ‘Lift yourself up.’ The key thing for me is, just don’t get too high. Don’t get too confident. Be ready.”

He wrote the song six years ago when things were pretty stable.

“A year later I got this weird combination of a lung and muscle thing that no one ever figured out,” he said. “Just goes to show ya.”

Goldberg recruited his older son Asher de Forest, 15, to whistle along in the background, performing the equivalent of a guitar solo midway through.

“You know I’m high, please let me down,” goes the chorus. “I’m high, please get me down.”

The second verse: “The sun is out and the sky is blue. I can’t help thinking everything is cool. It’s the perfect day for the perfect fool, who thinks he’s perfectly invincible.”

Goldberg expected he would have a transplant by now; the average time on the organ waitlist in the Northwest is two to three years. But in February, doctors discovered he had gone from having a low antibody count to a high one, which means his body is likely to reject most kidneys.

“The body is always trying to get rid of foreign things, and that’s what generates the antibodies,” he said.

Any new kidney will have to trick the body into fitting in perfectly: a compatible blood type, matching tissue and agreeable antibodies. As a result, Goldberg has to wait longer for the right kidney.

Organs from the waitlist come from deceased donors and typically don’t last as long as organs donated from living people. Goldberg hopes to locate a living donor willing to help out, even if their kidney won’t line up with his.

“I’m very unlikely to find a donor who will match me, but you can be part of a chain, so that’s what I’m looking for,” he said.

A “chain” is a kidney-swapping arrangement involving multiple patients, each with a willing but incompatible donor. In a three-way chain, for example, Patient A gets the kidney of Patient B’s donor, patient B gets the kidney of patient C’s donor, and Patient C gets the kidney of Patient A’s donor.

It can be as complicated as a dozen patients or as simple as a paired exchange. Donors can live anywhere in the U.S. The details are sorted out by exchange networks at hospitals such as Swedish Medical Center, where Goldberg has begun talking to a transplant rep.

“It’s highly coordinated and complex, but certainly possible,” Jackson said. “We’ve definitely seen in the last three years more reports of paired exchanges and chains. It is something out there.”

Still, she says paired exchanges are still relatively rare.

“The more common story on living donation is a son to a father, a father to a son, or a friend to a friend,” she said.

Last year, only 84 of the 1,550 patients at Northwest Kidney Centers received a kidney transplant.

“And our rate of transplantation is about 80 percent higher than the national average,” Jackson said.

One reason the figure might seem low is because most people on dialysis don’t actually want a kidney. Only 28 percent of patients at Northwest Kidney Centers are waiting for a new organ. The national average is 24 percent.

“I know of patients who feel very comfortable on dialysis as the therapy of choice,” Jackson said. “I know one patient who has been on dialysis for 32 years and he doesn’t want to get a transplant.”

The reasons are varied. Some might not want the hassle of surgery. Obese patients might have to lose weight before they can qualify. Others might not want the responsibility of taking 10 to 20 pills every day for the rest of their lives (if you stop taking your post-transplant immunosuppressant medicine for even one day, your body can start to reject your kidney).

“Transplant is not a cure, it’s another therapy,” Jackson said. “It has risks and benefits.”

For Goldberg, who has an active lifestyle, the benefits of a new kidney far outweigh the risks and responsibilities. He’s teaching a history class this fall. He wants to cook for his family. He wants to travel without having to lug the machine along or schedule stops at dialysis centers along the way.

And he wants to get the band back together again.

More in Life

Rose Johnson, 80, is a member of the Everett Area Newcomers Club, which meets and dines once a month at Sno-Isle Tech’s student-run Le Bistro Restaurant. (Dan Bates / The Herald)
Old-timers can join the Everett Area Newcomers Club

Everett group welcomes women for friendship and fun at multiple meet-ups.

From Jasper to Banff: A Canadian adventure in an RV

Jennifer Bardsley plans to take her family on two-week roadtrip through Canada in a tent trailer.

Skippers share sea stories at Marysville speaker series

The Bellingham couple will talk about charter cruises on the historic wooden vessel they rebuilt.

Expo in Stanwood can help you get ready for the country

The Country Living Expo and Cattlemen’s Winterschool is set for Jan. 27 at the high school.

Anxiety, or chronic worry, is a growing problem

Paul Schoenfeld shares four approaches to help keep your anxiety from getting out of control.

Find many of our region’s winter birds in the Skagit Valley

If you love birding, also check out these bird-related festivals, lectures and other events.

What’s new this year for travelers in England, Ireland

The nations are improving tourism infrastructures and adding exhibits to well-known sights.

A visit to the nursery helps put you in the mood to garden

Not ready to get back into gardening? January is still a fun time to poke around a garden center.

Plant of Merit: Hybrid oriental hellebores, Lenten rose

What: Oriental hybrid hellebores, with the common name Lenten rose, are a… Continue reading

Most Read