Kidney trouble: An unexpected gift meant everything
Janie Carlisle (left) with her kidney donor, Debbie Glover
Janie Carlisle never expected it the sudden failure of both her kidneys. Until that news, the grandmother of two had considered herself pretty healthy. Now, there was talk of dialysis and the need for a transplant. It felt like so much to take in.
But, she also hadn't anticipated how much support she'd receive from UnitedHealthcare at every step of the way or that a stranger would offer the greatest gift.
'Something is very wrong'
Janie was healthy or so it seemed. But, one day in February 2009, at the age of 48, she felt sick at work. A nurse at her office checked Janie's blood pressure and was concerned enough to send her to the hospital. Doctors there also found protein in her urine. Because these can be signs of kidney problems, Janie was referred to a specialist and started having regular kidney function tests. And, with treatment, her condition appeared to stabilize.
But, that fall, things took a startling turn for the worse. Janie began to have trouble breathing. She felt tired. And, she noticed she wasn't thinking clearly, either. Her next symptom alarmed her: Her legs ballooned with fluid.
Something is very wrong here, she recalls thinking.
Once more in the hospital, Janie underwent tests. The news wasn't good. She had end-stage renal disease, or kidney failure. And, even her doctors didn't know why it happened so suddenly.
Kidneys filter blood. So, when these vital organs fail, harmful waste can build up in the blood. To survive, Janie needed dialysis. It would do the work her kidneys could no longer do. Surgeons implanted an abdominal catheter so that she could start treatment immediately.
Fortunately, Janie would be able to give herself dialysis at home. She wouldn't have to schedule her days around lengthy sessions at a center. But, the treatments were still taxing. For several hours each evening, Janie needed to be hooked up to a machine just to stay alive.
And, her doctors made it clear that this wasn't a good long-term solution. Unless she received a kidney transplant, her life span would be shortened.
Above-and-beyond care and support
Her head swimming with information, Janie called her health insurance company, UnitedHealthcare. She had many questions about her coverage, about the costs, about everything. "I said, 'I have to have a kidney transplant and I don't know what I need to do,'" she says.
She was immediately referred to a special transplant resource service that was part of her benefits.* "They said, 'You will have a case manager who will work with you through everything.'"
Her transplant nurse case manager patiently answered her questions. Janie learned that if she was able to have a transplant, there were two network medical centers in her home state of Connecticut that could do it. Both were Centers of Excellence for transplantation.
And, there was more good news. The coverage exceeded her expectations which was a great relief.
Janie's transplant case manager and the team at Yale-New Haven Transplantation Center also helped her understand all the steps that would follow. She would need extensive evaluation and testing to be placed on a transplant waiting list.
And, she would need the right donor. A successful transplant depends on a good blood and tissue match. But, the wait could be years unless a living donor could be found sooner.
Out of nowhere: 'I'll give Janie a kidney'
Family and friends tried to be donors. But, again and again, it didn't work out. One candidate was seriously injured and couldn't donate during her long recovery. A relative was also a good match. But, her tests revealed kidney stones, eliminating her as a donor. "It was very unreal," Janie says.
Stunned by these setbacks, she began to accept that a transplant might never happen. I'll make the best of the way things are, she thought. She continued to work while doing her nightly dialysis at home.
Then, in the spring of 2012, after almost three years of waiting for a transplant, came some amazing news. A donor had been found all because of a chance meeting.
At a breast cancer charity event in Atlanta, Janie's sister met a trio of women cheering on a walker, whose name just happened to be Janie.
The women struck up a conversation. And, Janie's sister shared that her sibling was also named Janie and that she needed a kidney transplant. Much to everyone's surprise, one of the women, Debbie Glover, said, "I'll give Janie a kidney."
As it turns out, Debbie had recently volunteered to donate for another person in need. But, the patient received a kidney from someone else. So, in her heart, she was already prepared to give and had completed many of the required tests.
Janie felt overwhelmed by this stranger's generosity. And, even more wonderful: The two women were indeed a good match!
When Janie and Debbie first met, Janie shared a picture of her grandkids. There was something she wanted Debbie to know. "I said, 'This is what's important to me these little-bitty girls.'"
She received her new kidney in May 2012. And, according to Janie, the transplant that life-changing event might never have happened without the help of her insurer.
"The most important thing as this is a barrier to many people becoming donors UnitedHealthcare not only paid my medical and related expenses for the transplant but also the donor's," Janie says.
She never had to worry about financial coverage, which made it easier to focus on taking care of herself. And, UnitedHealthcare never wavered in supporting both her physical and emotional needs, she says.
Even before her surgery, Janie learned she could call a transplant support nurse any time. "I never hesitated to call if I had a problem or concern," she says. "I could call my nurse directly, even when I just needed some reassurance."
A life she loves
Janie says she still has a long road ahead and she continues to take medicines to prevent organ rejection. But, she also knows she still has the continuing support of her health care team and UnitedHealthcare.
In fact, shortly after surgery, her transplant case manager phoned just to see how she was doing and how she might be of help. "To me, that's just amazing," Janie says.
Today, with a healthy new kidney, Janie's planning a future again traveling and enjoying time with her granddaughters.
"I run around the house and chase and tickle them," she says. "I don't have to be hooked to a machine at 8 o'clock. I can go places with them and spend the night at their house, which they love."
Janie often thinks of Debbie a stranger, now a friend and what she did. "She gave me my life," she says.
*Check your benefits plan to see what services may be covered.