Gift of life strengthens family's bond
TRIPP — A Tripp family says they were always close, but the gift of life from mother to daughter a decade ago has strengthened their bond, and they are encouraging others to consider live organ donation.
Melanie (Bartunek) Levi was just 20 and a first-year telecommunications student at Mitchell Technical Institute when she began to have medical issues in 2001.
"My legs ballooned up, and I wasn't feeling well," Levi said, recalling one instance when she had to physically lift her leg in order to get out of her car, because it was so swollen. "At first, they thought I had leukemia," so she saw an oncologist.
After 18 months of testing, Levi was diagnosed with lupus that attacked her kidneys, which by then were functioning only half as well as they should have been. After four years of chemotherapy to stop the disease's destruction, Levi was about to discontinue treatment when her lupus went into remission. But by that time, her kidneys were functioning at just 13 percent.
"They said they'd normally put patients on dialysis at that point, but because of my age they said they wanted to find a donor instead," she recalled.
So her nephrologist, also known as a kidney specialist, looked to her family for a possible solution.
"They said close family is the best match," said Levi's mother, Mary Bartunek.
"They wanted someone younger," she said, but Levi's only sibling has his own medical issues and was unable to donate. When doctors asked her parents if they were willing to consider donating their spare kidney, Bartunek said there was no question how they'd answer.
"It didn't even cross my mind to help her. You don't think about it — you just do it. She was my kid, and I knew I had to help her," the now-57-year-old Tripp woman said.
Both David and Mary Bartunek underwent testing to give a life-saving kidney to their firstborn, first for blood type, and then more specific compatibility testing. Levi's father was ruled out early on due to a mismatched blood type, but her mother was a perfect match and a strong candidate, due to her good health, weight and lifestyle.
"They said that, if they could have the ideal donor for everyone, it would be her," Levi said.
Bartunek underwent a series of appointments, screening all of her organ systems for possible issues, and even underwent a mental health screening. All of the testing came back perfectly, and the two were scheduled for surgery in January 2008.
The mother-daughter duo underwent simultaneous surgeries in separate operating rooms at Avera McKennan Hospital in Sioux Falls. Levi said she finally realized just how sick she was when she was wheeled into the recovery room, where her dad and brother awaited the return of their family members.
"I heard them say, 'Oh my gosh! Look at how good she looks! She has color in her face!'" she recalled. "The kidney just took off and started working right away," and four days later, the family of four went home to Levi's apartment in Sioux Falls, where David Bartunek cared for his wife, and Jeremy Bartunek took care of his sister, who has since married.
The initial days after transplant were rough for both patients — Bartunek's abdomen had been inflated for her laparoscopic procedure and she endured discomfort in the early days, while Levi had to be taken to the hospital for intravenous antibiotics and phosphorus infusions. But, within two weeks, Bartunek was back to work fulltime as a dental assistant in Tripp, while her daughter continued to take off time to rebuild her immune system.
"At first, it's tough, but if you do what the doctors tell you, it'll all be fine," said Bartunek, whose life has returned to how it was prior to giving her "extra" kidney to her daughter, though she does have annual checkups to ensure her remaining kidney continues to function properly.
Levi's life has changed dramatically since the transplant, but because her mom took such good care of the organ before it was removed from her body, she hardly remembers feeling anything other than well.
"I look back, and I don't think of pain," she said. "I just feel good."
According to Levi's nephrologist, the average life expectancy of a transplanted kidney is 10 to 20 years, but Bartunek's donated kidney was in such good condition, thanks to a lifetime of eating well, exercising and avoiding drugs, alcohol and tobacco, that Levi is anticipated to have another 10 to 20 years before she has to consider a second transplant. At her 10-year post-transplant appointment, the "new" kidney was functioning at the same efficiency as it was when she received it.
But one other notable thing has changed for Levi: her cravings.
"She likes chocolate, and I never liked it. Now, I crave it," Levi said with a laugh. "And the same with bananas. My doctor said that happens sometimes with transplant patients. It's kind of neat."
Medical advances help ease donation process
Kidneys are a critical organ in the human body, responsible for filtering out all of the unbeneficial components to the food, beverages and medications a person consumes. But, unlike most vital organs, humans are born with more than they need, which is why the "share your spare" slogan has become popular.
According to the National Kidney Foundation, 1 in 7 Americans will experience kidney disease of some kind. Currently, 373 South Dakotans are awaiting organ transplants, and 340 of them need kidneys.
"People may wait anywhere from a few days in very dire situations, up to a decade for a transplant and, that whole time, they're on that list because they have end-stage organ failure and that transplant will ultimately save their life," explained Becky Ousley, communications manager for LifeSource, a nonprofit organization based in Minneapolis that serves grieving families in Minnesota and the Dakotas.
Federal statute mandates that all deaths or potential deaths be referred to the local organ donation agency to assess for potential donation, but few deaths actually occur in a manner that makes organ donation possible, meaning live kidney donors are vital to keeping many of those patients alive.
Gene Dickey, community outreach manager for the Dakotas for the National Kidney Foundation, said that, often, potential live donors hesitate to share their life-giving organs with others out of unnecessary fear.
Some potential donors — especially those who are parents — hesitate to give up their extra kidney out of fear that they or a loved one may need it in the future, but Dickey said the screening process can actually alert potential donors to issues with their own bodies that they may otherwise be unaware of until they find themselves in desperate situations.
"There is such an extensive process to be a match. If they're looking and something comes up that indicates you have a potential for kidney disease yourself, the hospital isn't going to take the organ," Dickey said, adding that it often takes months to determine compatibility and safety for the donor.
And modern medicine has simplified the donation process.
"There isn't a lot of risk to the donor anymore," Dickey said. "Currently, the risk of transplant is equivalent to the risk of an appendectomy. A lot of times, they can do it laparoscopically," so the recovery time is generally much less for the donor than it is for the recipient. A laparoscopy is a surgery with small incisions and is conducted with a tool that has a small camera and light.
But there is still progress to be made for donors. The National Kidney Foundation is working on the Donor Protection Act, both nationally and state-by-state. One part of that act already has been approved, but others are still in the works.
Until last year, donors' jobs were not protected during recovery under the Family Medical Leave Act, as organ donation was viewed as an elective surgery. Now, however, donors working for companies with more than 50 employees are required to allow their employees up to 12 weeks off work to heal from their procedures, though they are not required to be paid for that time away from their duties. In some states, tax breaks and other incentives are available to those who donate organs while still living, but not in South Dakota.
Never a doubt
Bartunek had been contemplating offering her spare kidney to a stranger for a couple of years before her daughter became ill.
"I thought that it would be nice to help somebody who needed it," she said. "How odd that she ended up needing it. ... Then, I felt guilty for thinking that way, because it ended up happening."
Now, Bartunek said she encourages anyone who is able to consider donating their spare kidney.
"People ask me what I'll do if my kidney fails, but I don't even think about it," she said. "This is my daughter, and I had the cure for her disease inside of me. I needed to take care of her."
"You just hope someone else will step up if she needs it," Levi added.
And, according to Dickey, former donors are prioritized if they find themselves in need of a transplant in the future.
"(The United Network for Organ Sharing) policy is that they prioritize a living donor," he said.