PANAMA CITY BEACH, Fla. – Shannon Pipes was born with one kidney, and it was covered in scar tissue.
For most of her childhood, the kidney functioned, but in the last few years, she has had to undergo dialysis for as long as 11 hours a day, every day.
Pipes, 20, quit her job as a cashier at Winn-Dixie because of her health, but not before meeting and falling in love with one of the store's managers, William Burton. The love was mutual and the timing was perfect.
The couple became engaged two years ago and was planning a May 21 wedding in Las Vegas, but Pipes' health began to deteriorate. She was diagnosed with end stage renal disease and recently was put on the kidney donor list. Before Pipes' family or friends could be scheduled for testing, Burton volunteered to go first. Although the odds were against him being a match, Burton proved to be a candidate.
"It was a no-brainer," Burton said, smiling at Pipes. "I didn't want her to be tied to a machine; I want her to have a normal life."
Burton said he got on the Internet and researched the donation procedure. He will have to be hospitalized for two to six weeks, but he said his employer is behind him and helping Pipes get her life back is worth it.
While receiving a new kidney is a lifesaving surgery, it is a high-risk one for Pipes.
"When I was 4, I went into a hypoglycemic coma, I had my gall bladder out at 11 and I had a thyroid storm when I was 15, which makes your blood pressure shoot up and is life-threatening. I spent 10 days in the hospital and have to take blood thinners," she said.
Shayma Salman, the social worker at DaVita Dialysis Center, Panama City, where Pipes receives help with her home dialysis treatments, tried to schedule the transplant. But Shands Hospital in Gainesville and the Mayo Clinic in Jacksonville refused to operate on Pipes because of her pre-existing health conditions.
Salman said she finally was able to arrange the surgery at the University of Alabama-Birmingham, for May 5. The procedure will cost about $200,000. Medicare will cover the bulk of the cost, but Medicaid has been balking about paying its share of $20,000 because the operation will take place out of the state. Each state has its own Medicaid program.
"I don't understand it," Salman said. "If no hospital in Florida is willing to do the transplant, then Medicaid should cover it. Shannon can't work and has no income. She's dependent on William."
Salman said Florida Medicaid and the UAB hospital are sending different messages.
"It's hard to get any answers from anyone," Salman said. "We sent the authorization to Tallahassee, and they said we didn't need pre-authorization. UAB told Shannon that she would have to pay $20,000 out of pocket.
"One of the biggest stressors that people on dialysis have is finances," she said. "How are they going to pay for treatment?" Pipes' financial worries stretch far beyond the surgery. She will have to take very expensive medicine the rest of her life to keep her body from rejecting the new kidney.
"I have to get a job with insurance after the transplant to pay for the medicine, or I'll lose the new kidney," Pipes said.
Despite her illness, Pipes spends her time helping others with kidney disease. She volunteers to speak to people newly diagnosed with end stage renal disease to help them understand what they're up against.
In February, William helped her set up her Web site. The site, kidneyfun.com, includes member forums on kidney disease and dialysis, a chat room, a member arcade of games with 4,000 games and tournaments for members, and a gallery where photos can be shared online. Members have made 33,541 posts since the site's inception.
"There are 350 members. I don't make any money from it," Pipes said. "If they have questions or problems, we can try to help and we try to help new patients."
April is Donate Life Month, and Shayma Salman, social worker at DaVita Dialysis Center, wants people to know how important it is to donate organs and that one doesn't have to be deceased to donate a kidney.
"We have 150 patients here that require dialysis or kidney transplants," Salman said. "We need more people to donate organs. If people don't have family or friends who can donate, it's unfortunate. A lot of people die waiting for a transplant."