Waiting for a kidney, he breaks out in song
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.
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