A woman in Toronto is set to receive a lifesaving kidney transplant from a kind stranger and is paying it forward for other patients — all thanks to the power of social media.
Jennen Johnson, 42, a mother of one in Toronto, is in renal kidney failure, the result of a decades-long battle with lupus, an autoimmune disease that attacks the body’s organs and causes chest pain, labored breathing, skin lesions, facial rashes, and joint stiffening. For the 1.5 million Americans who suffer from lupus, the condition is genetic and often triggered by sunlight, various infections, or medications.
Johnson was diagnosed with lupus in her mid-20s and had managed the disease through high-dose cycles of the immunosuppressive drug prednisone, among other medications. But two years ago, during a routine checkup, Johnson’s urine revealed high levels of protein, and after an ultrasound and biopsy, the mom was given bad news. “The doctors told me my lupus was attacking my kidneys,” Johnson tells Yahoo Lifestyle.
According to the Urology Care Foundation, kidney disease occurs when the kidneys are no longer able to function properly, causing waste to build up inside the body, which can be fatal.
Doctors prescribed Johnson medicine to slow the release of protein in her body and manage her blood pressure. She was required to reduce her salt intake and prescribed counseling to handle all the changes coming her way.
She was also placed on a six- to eight-year deceased donor wait list and a living donor list that spanned even longer. While both of Johnson’s kidneys are failing, the plan was to give her a third donor kidney to take over once the weaker one failed completely.
Eventually, Johnson started on dialysis, a time-consuming and uncomfortable ongoing procedure that filters waste from the body, substituting the job of working, normal kidneys. “At one point, I was in the hospital and overheard a doctor tell his med students that I had only four years left to live,” she says.
At the end of September, Johnson’s health worsened and she began vomiting after every meal. “My doctor said, ‘Something has to give. You need a donor now,’” she says.
Johnson began asking friends and family if anyone could donate but no one had type O blood. “I was thinking, OK, do I need to contact my relatives in Trinidad or old high school friends?”
One day, Johnson’s mom had an epiphany. “While she was in the shower, she said God told her to place a personal ad in the newspaper asking if anyone wanted to give me their kidney,” says Johnson. “I was like, ‘What are you talking about?’”
Skeptical, Johnson queried three major Toronto newspapers, but none wanted to broach the topic of organ trade. She finally found placement in a free, alternative weekly newspaper called NOW, but unable to afford the $3,000 for a two-week ad, she turned to Facebook to raise funds.
“Mother of a 12-year-old daughter desperately looking for a generous O blood type, willing to get tested and possibly donate a kidney to save my life,” read Johnson’s ad. “If seriously interested in helping me continue to be a mom to my daughter for years to come, please contact me.”
“The ad went totally viral, getting more than 1K shares in three weeks,” says Johnson, adding that she began receiving phone calls and messages from all over the United States, plus Indonesia from a potential donor willing to make the 9,300-mile trip to Toronto.
However, the woman who saved Johnson’s life lived only an hour away.
Christi Nolan, 37, a yoga instructor in Hamilton, Ontario, saw the Facebook ad and took “only three seconds” to pick up the phone and call Johnson.
“When I saw Jennen’s ad, I knew so strongly that I had to donate my kidney,” Nolan tells Yahoo Lifestyle. “This wasn’t a rash, impulsive decision, and I never considered backing out, especially considering all the rejection Jennen must have faced.”
After the two women briefly communicated over Facebook, Nolan downloaded an application from Toronto General Hospital and signed up for a health screening. One month later, she started the necessary blood and urine work and psychological testing to determine mental and physical compatibility and was determined a 91 percent match — an outcome typically for family members — for the March 27 surgery.
“Christi is my angel donor,” says Johnson. “She’s so selfless and a blessing, and she doesn’t even realize it. She just happened to be on Facebook that fateful day.”
The serendipitous arrangement doesn’t surprise Jen Martin, vice president of the National Kidney Foundation, who oversees the organization’s the Big Ask: the Big Give program, which encourages patients to spread their stories on social media in the hopes of finding kidney donors. “We want people to consider social media as another option, in addition to getting on the donor list,” Martin tells Yahoo Lifestyle.
There are not many statistics proving the success rate of crowdsourced kidney donations; however, a 2011 Loyola University study found that of 91 Facebook pages studied, 12 percent had reported receiving a kidney transplant, per the HuffPost, and 30 percent reported that potential donors volunteered to undergo testing. “What I can say is that it is clear that social media are being used by people to look for kidney donors, and the transplant medical community needs to be prepared for this and some of the special issues its use may create,” study author Alexander Chang told Scientific American. “Moreover, people of all stripes and ages are using social media in this manner.”
The Big Ask: the Big Give offers workshops and a help line from which patients can receive training for incorporating social media into their search and feedback from people who have gone through the process. “We suggest people share their stories on social media, starting with their immediate networks, and expand from there,” says Martin, adding that Facebook can be more effective than, say, a billboard ad that can inundate hospitals with calls from volunteers.
For those uncomfortable with the idea of soliciting donors online, Martin says, subtlety works. “You don’t need to say, ‘Can you donate a kidney?’ You can ask if one might consider a donation or help share the post,” she says. “Anything helps.”
There is no compensation for organ donation on ethical and financial grounds — for example, low-income people may be coerced into donating — and Martin says the common profile of a donor is one with either a personal tie to the cause or an altruistic history. “We know of a woman who donated her kidney and pancreas because her husband underwent the same procedure and she wanted to pay it forward,” says Martin.
For Nolan, her deed was divine. “I believe we’re all connected on such a basic level, and I don’t have the right to determine who deserves life. Giving my kidney is an extension of how I feel about humankind.”
The women met briefly while Johnson was receiving dialysis in January, but on Saturday Nolan drove to Johnson’s home for lunch and to meet the entire family she’s helping to stick together.
Johnson said her kidney disease served a higher purpose, and she’s determined to help other patients. She has created her own “transplant list” composed of 13 people who underwent prescreening when she was in need. “I’ve already paired up a little girl with someone on the list,” she says. “I used to ask God, ‘Why me?’ but now I say, ‘Why not me?’”
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