Jody Cushman is battling tough odds. You’d never know it talking to her—she’s positive, matter-of-fact, warm and friendly. She makes the best of a limited lifestyle, devoting her time to family and friends.
For instance, she’s almost done with a remodeling project that will turn her spare bedroom into a walk-in closet. Not for her—for her friends.
“I miss out so much on girls’ nights, going out to dinner and on the town,” she said. “I want to entice my girls to get ready at my home.”
Cushman, 41, must hook herself up to a dialysis machine every night at 7 for 12 hours. The treatments keep her alive while she waits and hopes for a kidney match from a donor.
Diagnosed with diabetes at age 4, Redding resident Cushman said disease complications and an overuse of ibuprofen—which can damage kidneys—led to her first kidney failure and transplant at age 19. That kidney lasted 10 years before it, too, failed, forcing her back into dialysis for the past nine years.
“I need to say this,” she said. “This was brought on from diabetes and the fact that I wasn’t aware as much as I should have been. It wasn’t drug-induced. It wasn’t alcohol-induced. I’m not a smoker.”
Because her antibody levels have stayed at 100 percent, instead of the 80 percent or lower recommended for a successful transplant, Cushman did research to find a hospital willing to include her on its transplant list. Cedars-Sinai in Los Angeles agreed.
“They are amazing and have worked with me so well,” she said. “I’ve had opportunities with them I could never have asked for anywhere else.”
Cushman’s doctor, Stanley C. Jordan, Cedars-Sinai director of nephrology and transplant immunology and medical director of the kidney transplant program talked at length about the urgent need for kidney donations to address the growing number of patients with kidney disease in the U.S.—about 700,000 are on dialysis currently. (The main causes of kidney disease are high blood pressure and diabetes.)
“We only do about 17,000 transplants per year,” he said. “The primary problem is the number of donors. This has not grown at all in last decade.”
Many people think dialysis is an equivalent therapy to a transplant, but “it’s absolutely not,” he said. “Dialysis keeps people alive, but the long-term outcomes are very poor, and people are chained to these machines.”
A successful transplant can decrease a patient’s mortality risk to 1 percent to 2 percent a year versus 10 percent to 20 percent a year on dialysis, he noted. The longer someone is on dialysis, however, the more it “beats them up” and makes their body less receptive to a transplant.
For that reason, Jordan and other doctors push for early transplants. “If you have a living donor, that’s the way to go because you can address the problem right away,” he said.
But matches can be difficult, especially for people like Cushman with high antibodies. “Even if you’re a regular person with no antibodies, you have to wait about eight years in California to get a deceased kidney,” Jordan said.
For more than a decade Cedars-Sinai has been doing what are called “desensitization protocols” with higher-risk patients in an effort to reduce their antibodies and the chance of organ rejection.
“We’re looking at new drugs, trying to advance this area as best we can,” Jordan said. “It’s made a dent, but what we often see is we can move these antibodies down, but we don’t have a donor for these patients.”
Last year Cushman went through 12 desensitization treatments at the Southern California hospital. “They’re not telling me it’s impossible to get a transplant,” she said. “They know my attitude is if I have a one-in-a-million chance, it’s a chance. I’m not going to stop living my life. I’m doing my best.”
That indomitable spirit is one of the things that makes Cushman such an inspiration to her family and friends, said Janell Lawrence, 43, of Redding.
“She’s a very, very special lady,” she said. “She’s witty and funny. I think you have to have that outlook on life to face as many medical challenges as she does.”
Lawrence met Cushman about eight years ago. Cushman is a lifelong North State resident who was born in Fall River Mills, graduated from Enterprise High School and attended Shasta College.
“As long as I’ve known her, she’s always needed a kidney and always been on dialysis,” Lawrence said. “She’s tough as nails, but it’s always a reminder that she’s fragile.”
Lawrence said those close to Cushman have been checked to see if they are a match. Lawrence is not able to donate because she has had cancer. She was diagnosed in 2009 with breast cancer—an experience she says Cushman helped her through, with laughter and optimism.
“She is a light,” she said.
And so Cushman’s friends and family—which includes longtime boyfriend and Afghanistan military veteran Ben Winchester—have been seeking ways to educate people about the need for live organ donations, not just for Cushman but for others, too.
The group has held fundraisers to help with some of Cushman’s medical and travel expenses (the cost to be on dialysis is about $100,000 per patient per year, Jordan said). They started a nonprofit foundation, Kidney4JoJo, and designed a website (www.kidney4jojo.org) to let people know about Cushman’s need as well as the steps involved in becoming a live organ donor.
“Our main message is spreading awareness that live organ donors are desperately needed,” Lawrence said.
Seeking creative solutions to the donor shortage, Cedars-Sinai has started doing “paired-kidney” donations, Jordan said. A paired donation transplant enables two incompatible recipients to receive healthy, more compatible kidneys. Donor A offers a kidney for her friend, but it doesn’t match; elsewhere donor B has a mismatch with his friend. Turns out that A’s kidney matches B’s friend and vice versa, so the donations are cross-matched, with both patients receiving a kidney from a stranger.
Jordan said people hesitate to donate a kidney for many reasons—a common one being the economic stress of taking time off work to recover from surgery. In 2000, transplant surgeons at Cedars Sinai began doing laparoscopic donor nephrectomies, making small incisions to remove the kidney (similar to gall-bladder surgery). This significantly reduces the recovery time for organ donors Jordan said.
Potential donors can also be reassured by studies showing a person’s risk of needing dialysis because of kidney disease is the same whether they have one kidney or two. The bottom line, says Jordan: “There is no increased risk of kidney failure or dying if you have only one kidney.”
Any potential donor is heavily vetted. It’s illegal to be paid for an organ. Sometimes Cedars-Sinai will get a “Good Samaritan” donor who just wants to do help someone out, Jordan said. “Those are wonderful,” he said. “With paired kidney donation, we can start a chain transplant because we can crack an incompatibility with a Good Samaritan donor.”
But the hospital has also seen people who want to donate only to a high-profile patient. “We’ve seen people whose motivations we’re not sure about,” he said. “We have to be sure they understand what they’re doing—they won’t be paid or get connectivity with a patient.”
There’s nothing more rewarding than getting donations that can be matched, Jordan said. “We have these sessions going over cross-matches, waiting, and then we get another donor and go ‘wow’ – it finally falls together.”
That’s the hope for Cushman.
“Jody’s a great person and very patient with us,” he said.
Lawrence said Cushman takes care of herself as best she can. “She’s doing all the right things; she just needs that kidney,” she said. She described her friend as a music and dog lover, talented with decorating, and someone who enjoys short walks on the river trail. “I love to go for walks with her because she has just the right amount of energy for me,” she said, laughing.
Cushman is honest: life is difficult right now. “I’m go, go, go, and now I have a cane,” she said. “My life is all-consumed by it.”
But she keeps fighting. “It’s not just battling, it’s overcoming,” she said. “If it’s not for me, it’s for someone that’s going to benefit from knowing. If I can help anyone through this, it’s worth it.”
Those who know Cushman—including those at Cedars-Sinai—admire her resolve and strength. They hope for the kidney match that could come at any time.
“She has a very fragile life, but she keeps on trucking,” Lawrence said. “There’s nobody that comes back with more passion for life than Jody Cushman.”
To learn more about kidney donation (or to donate to help with Cushman’s medical expenses), visit www.kidney4jojo.org.
Candace L. Brown has been a newspaper and magazine reporter and editor for 20 years. She lives in Redding and can be reached at firstname.lastname@example.org.