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Earlier this year, Julie Kennedy received a gift bag filled with kidney beans. At first, she didn’t think much of the gift. Battling end-stage renal disease, she can’t eat kidney beans because of their high phosphorous and potassium content. Then she realized it was her daughter Joy’s way of telling her that Legacy Health Center’s transplant team had found a kidney donor that was a perfect match. Joy also enclosed a card that read, “Come rain, come shine, I will be with you every step of the way. You gave me life, now let me save yours.” On Monday, a week after her 39th birthday, Joy Maxwell-Brown will donate one of her kidneys to her mother. Kennedy calls it “a gift of life.” Maxwell-Brown calls the opportunity to save her mother’s life the best birthday gift of all. This will be the second transplant for the 64-year-old Kennedy, who was diagnosed with lupus in 1986. Lupus, an autoimmune disease, can affect many body systems and organs, including the kidneys. She’s lived with chronic kidney disease for the past 21 years. A seizure and heart attack in 1997 landed her in intensive care for six days. Her kidneys shut down and she had to undergo dialysis for six weeks. She was told her kidneys would never function on their own again. Kennedy’s kidneys did regain function, albeit only 28 percent, she said. “But I lived with it for 17 years and was fine without dialysis,” she said. “I feel blessed I had those 17 years. But it has been quite a journey.” That journey included losing her husband, R.C. Kennedy, to cancer more than four years ago, about the same time her kidneys began failing again. R.C. underwent chemotherapy hopeful he would be around to take care of her. Kennedy’s sister was a living donor for the first transplant in 2014. During a seven-hour surgery at Oregon Health Sciences University, both of Kennedy’s failing kidneys were removed and replaced with the healthy kidney. She said she was able to return to a very active and full life, which included running marathons. However, a year later, she began to experience problems with the new kidney. About 18 months ago, she went into complete kidney failure again. Since then the Eagle Point resident has endured dialysis four hours a day, three times a week — she has zero kidney function without it. Without a new kidney, she will surely die, said her family. From 4 to 8 a.m. Tuesdays, Thursdays and Saturdays, Kennedy’s life is on hold. “You figure there are 168 hours in a week, 84 of them waking hours … 12 hours of them spent on dialysis — that’s a big chunk of my week,” she said. Post-dialysis is spent on the couch or in bed, she said. On the days Kennedy is not on dialysis, she makes up for lost time. “Just the other day, she was painting an apartment,” said Maxwell-Brown. Kennedy manages two apartment buildings — one in Medford, one in Shady Cove — and takes care of maintenance chores at both. She camped with family at Union Creek three weeks ago, and hiked the mile or so between the Rogue River Gorge and the campsite. She’s also an avid gardener. Each winter, she climbs into her motorhome and heads to the warmer climate of Southern California. Once there, she continues dialysis treatments at a local clinic. When Maxwell-Brown’s son, Nicholas, graduated from boot camp at Lakeland Air Force Base in January, the proud grandma made the trip to San Antonio and strolled the fame Riverwalk. “She refuses to live like she’s dying,” said Maxwell-Brown. “She’s strong, and strong-willed.” Dialysis is very challenging this time around, Kennedy admits. In addition to the risk of infection and suppressed immunity, she has extremely low blood pressure. Despite the struggle, she’s grateful. “Dialysis does keep me alive, and I am thankful for that,” she said. “People with liver failure or other organ failure have no machine to keep them alive. I do. “A transplant, however, would double my life expectancy.” After Kennedy was approved for a kidney transplant at Legacy’s Good Samaritan Hospital last fall, she began searching for a living donor. Living donor kidney transplants are considered the best option for several reasons, including better long-term results, surgery can be planned at a time convenient for both the donor and recipient, lower risks of complications or rejection, and better early function of the transplanted kidney. Any healthy person can donate a kidney. When a living person donates a kidney, the remaining kidney will enlarge slightly as it takes over the work of two kidneys. At first, Kennedy did not want another family member undergoing the grueling kidney transplant procedures and post-surgery recovery only to have it all fail again. “We had to sit her down and tell her she was being selfish,” said Maxwell-Brown. “We told her we are going to lose you without the surgery. She was being selfless and selfish at the same time.” Kennedy is grateful that her youngest daughter “graciously stepped forward,” but jokes that she “snuck behind my back” to be tested and evaluated. Kennedy’s two older daughters, Jennifer Lewis and Janelle Scofield, have signed on as caregivers while their mother recovers in Portland and back home in Eagle Point. “We told her, ‘let us save your life, have you around longer, and give you quality of life,’” said Maxwell-Brown. Kennedy’s niece Randi Hannon has set up a GoFundMe account to help both her aunt and her cousin with anticipated expenses above and beyond the surgeries. Based on the out-of-pocket expenses in 2014, Hannon has set a goal of raising $7,000. Kennedy and Maxwell-Brown figure the actual out-of-pocket could go as high as $10,000 to $12,000. Medicare will cover about 80 percent of the costs of both surgeries, including follow-up appointments and tests and anti-rejection medicines, but not the expense of the extended motel stays both women will have post-op. Maxwell-Brown will remain in Portland for seven to 10 days until her follow-up appointment, and Kennedy will have to stay for 30 days. Kennedy also will rack up additional bills traveling to Portland weekly for several months. Maxwell-Brown, who works in the Mail Tribune’s circulation department, will be off work for at least six weeks, maybe longer. Her recovery time is longer than she originally anticipated. Due to the structure of her donor kidney, the surgery cannot be done laparoscopically. She will have a more invasive procedure which includes the removal of the tip of her 12th rib. The mother of three said her 16-year-old daughter, Alexis, is looking forward to being her caregiver. She adds that her husband, Chris Brown, and younger daughter Cadence will also be a big help. Kennedy is still overwhelmed at the gift of life her daughter is giving her. “You are my hero,” said Maxwell-Brown. “And you are mine,” her mother responds. For a while, the transplant team will keep a close eye on Kennedy’s new kidney. She said she knows it’s a fine line between rejection and acceptance. Counting on the new kidney thriving, she has a bucket list of things to do, places to go, people to see. “There’s a lot more hiking to do, and I want to backpack again,” she said. The entire 10-mile loop at Silver Falls State Park and trails around Lake Tahoe are at the top of the list. “I plan to enjoy my grandchildren and great-grandchildren,” she adds. “Three of my grandsons graduate from high school next year. I plan to see them graduate.” She’s also looking forward to eating ice cream again — and macaroni and cheese. And who knows? Maybe kidney beans will be on the menu, too. If you want to help mother and daughter, go to www.gofundme.com/support-julie-and-joy. Facts about organ donation • As of April 2018, 114,000-plus men, women and children were on the national transplant waiting list. • Every 10 minutes, another person is added to the waiting list. • Twenty people die each day waiting for a transplant. • 34,770 transplants were performed in 2017. • 95 percent of American adults support organ donation, but only 54 percent are actually signed up as donors. • One (cadaver) donor can save eight lives, donating up to eight life-saving organs — organdonor.gov Reach Grants Pass freelance writer Tammy Asnicar at [email protected].