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KLIPSAN BEACH — It was around Christmas time four years ago when Jane Snow was feeling unusually tired.
Her husband, Rob, remembers they were Christmas shopping in Portland and she was struggling to walk from their car to Nordstrom, unable to keep up with even his shortest strides and slowest of paces.
At a time when she was so focused on finding items that would bring joy to the faces of others, Jane had no idea that soon she would be hoping for a gift of her own.
Soon faced with the grave truth that her survival was contingent upon someone else’s sacrifice, the gift Jane needed wasn’t something that could be picked up at a department store. What she needed was a good deed, and she had little notion as to how far her friends and family — and complete strangers — were willing to go in order to pay it forward.
Bad news from the doctor
Shortly after the shopping trip, Jane became more concerned about her condition and went to her doctor. She suspected that her thyroid was to blame.
But when Terri Miller, ARNP, at the Family Health Center at North Beach got Jane’s blood test results back, she found that her patient wasn’t dealing with a faulty thyroid but was actually suffering from kidney failure — and she needed to get to a hospital immediately.
The Snows drove straight to Portland, where Jane found out that patients who have had test results as grim as hers usually aren’t able to even walk on their own, and often only have about a week to live.
With both kidneys failing, she was promptly put on dialysis, first receiving treatment in Portland and later in Astoria. Medications were prescribed and nutritionists helped her to understand the restricted diet she would have to follow to get the best results from her dialysis treatment — no sodium, low potassium, no potatoes, no orange juice, no dairy.
“Everything you like, everything you take for granted — forget it. Butter, mayonnaise — forget it,” she explains.
Rob remembers Jane had no energy and simply didn’t feel good, despite the excellent treatment she received. “We’d get up at 4 a.m., start dialysis at 6 a.m. and then go back home at 10 a.m., and she’d sleep the rest of the day … You’re gradually dying when you’re on dialysis. They’re essentially keeping you alive … The kidneys are critical, essential organs.”
Years on dialysis
Jane was on dialysis for three and a half years and was on the transplant waiting list twice. She attended dialysis and followed the nutritionist’s directions exactly, as straying from them would lessen her chances of receiving a new kidney. No matter if the new kidney was from a deceased donor or a live transplant, Jane says her doctor advised her to take the first offer she received.
“It depends on blood types, but the waiting time in Oregon and Washington is shorter than those around the rest of the country,” explains William Bennett, MD, the medical director for Legacy Transplant Services. “The waiting time in Oregon is about two years, and in Washington it’s about three and a half to four years. ”
Both of their daughters, Gena Travis and Leighanne Scott, were tested as prospective kidney donors, but they both have Rob’s blood type, which disqualified them from donating a kidney to their mom, who had a different blood type. Jane’s longtime friend shared the same blood type and offered to donate her kidney, but doctors determined her health wasn’t stable enough to live with only one kidney.
“People think if you have the same blood type, then they can share an organ, but it’s not that easy,” Jane laments. “The first time I had my foot in the door and was close to the front of the line for getting a kidney. But then I was diagnosed with congestive heart failure. So I got a pacemaker and a defibrillator, and I had to wait a year — they wanted to make sure I’d make it. Then when I got back on the list — that was this February — I was told it would be one and a half to two years.”
“The transplantation is more successful if it comes from a living donor,” says Bennett. “People are looking for living donors, so people are often looking at their friends or family members as donors. But sometimes they are unable to donate because of blood type, which was her situation – she had a donor available but they did not match. So we enrolled her in Alliance for Paired Donation.”
Alliance for Paired Donation
By registering with a program like Alliance for Paired Donation, a patient and his or her incompatible kidney donor can be paired — via a computer database — with other patients and donors in the same situation.
According to Alliance for Paired Donation, “More than 88,000 people in America are waiting for a kidney transplant; sadly, about 12 of these patients die every day because there aren’t enough donors.”
Having read about paired donation transplants in the past, Gena committed to the idea of donating one of her kidneys on behalf of her mother, giving Jane a better chance of receiving a matching kidney. In December, Gena underwent a variety of tests, evaluations and X-rays before her health was cleared and she was approved for the donor list.
“They perform medical tests to make sure you’re healthy, and they take into account your blood work, age, any cancers, X-rays,” Gena explains. “They have to make sure you have two kidneys, they have to check your medical history, and you can’t have high blood pressure or diabetes because those are the leading causes of kidney failure.”
For months, she waited for the phone call that would match her with a recipient.
One can only imagine how delighted Gena was when she found out her mom was going to receive her “new” kidney before Gena had even received the call donate her own.
On May 9, Jane was matched with a kidney that a 40-year-old man donated on behalf of his sister-in-law. Both of Jane’s kidneys were left intact while surgeons laid the donated kidney onto the right side of her pelvis, secured it, and attached the new kidney’s ureter to her bladder.
Once in recovery, Jane says she “immediately noticed a difference” in her symptoms. She was in the hospital for four days and had regular follow-up appointments for three weeks. She was given a couple rounds of steroids to deter her body from rejecting the new organ.
She is gradually gaining her energy back and becoming mobile again. She will take anti-rejection medication for the rest of her life, but she says it’s a small price to pay for improved quality of life.
A matching gift in Denver
In July, Gena got “the call.” She was notified that there was a 36-year-old woman in Denver, Colo., whose kidneys had failed as a result of hemolytic-uremic syndrome. Gena flew to Denver, and on Aug. 31, surgeons removed one of her kidneys and placed it in Andrea Linn, a mother of two.
As situations like this have been known to do, Jane and Gena became part of a chain reaction. The kidney which a man donated on his sister-in-law’s behalf to Jane. Gena’s kidney, which was donated on Jane’s behalf, was given to Andrea. And a kidney donated on Andrea’s behalf was given to another patient in need. Three of those surgeries took place that day at University of Colorado Hospital.
Gena was in the hospital for six days before getting her clearance to fly home to Honolulu, Hawaii, on Sept. 7. She and Andrea signed clearance waivers to be able to meet each other face to face before Gena flew home. If given the opportunity, Gena says she would do it all over again. The other day, she received a voicemail message from Andrea, thanking her for allowing her to be a bigger part of her children’s lives now that she no longer needs dialysis.
“It wasn’t a bad recovery, but it’s pretty tender,” Gena said Friday. “I’m just taking Tylenol. I have to take it easy for two weeks, and not lift anything over 10 pounds. It’s really not that big of a deal; you don’t need two kidneys to survive, obviously. You just can’t have anti-inflammatory medications, but I take Tylenol … I don’t know if it’s going to sink in, everyone says ‘What a great gift to give.’ But for me it wasn’t an option, and I was healthy enough to do it.”
Jane says she’s grateful for Alliance for Paired Donation and the people who gave her a new lease on life.
Given another chance
“I feel very, very, very fortunate, because it feels like I’ve been given another chance,” Jane, 66, beams. “It would be so wonderful if more people considered donating while they’re still alive, because it doesn’t help just one person, it can help four, six, eight people. It amazes me that there are some people so kind and so generous to do something like that. Makes me wish I was younger, with younger organs [that I could donate]!”
“Well you are younger — your kidney is from a 40-year-old!” her husband quips.
Bennett says Legacy Good Samaritan has performed six or seven live transplants this way. “In fact, one of our own employees here just donated to no one he knew, just out of the goodness of his heart.”
Individuals who donate organs anonymously are called “non-directed living donors.” Bennett says Legacy and Oregon Health Sciences University jointly participate in such donations.
More information on live kidney donors can be found at
www.paireddonation.org.
Topic: Heartwarming Paired Exchange Story (Read 2772 times)