See How Jefferson Helped Jean Get a Kidney and Pancreas
"I Got My Life Back"
Jean Middendorf—who was born in Philadelphia but moved to upstate New York when she was eight—began her journey to kidney-pancreas transplantation in childhood. At age four, she was diagnosed with juvenile diabetes and began what she thought would be a lifetime of insulin injections and daily blood-sugar checks.
Even so, she didn't let juvenile diabetes stand in the way of her life. After high school graduation, Jean attended culinary school and became a chef—a job she enjoyed for about eight years. But then Jean, who is now 31, began having serious troubles with her eyes at work.
"I went to an ophthalmologist who flat-out told me I was going to go blind," she says. "My eyes just continued to get worse." Jean ultimately underwent two lengthy and complex eye operations. After each surgery, she spent about two months without any vision while her eyes healed. About five years ago—as she was healing from the second eye surgery—she began to notice other health problems.
"My feet, ankles and legs were swelling," Jean recalls. "I was always tired and cold. It was very uncomfortable." When she visited her family doctor about the symptoms, he had her admitted to the hospital right away. Tests soon confirmed that her kidneys were failing.
Jean started peritoneal dialysis (PD) and was put on two transplant lists—one for New York City and one for Philadelphia. She underwent dialysis for two years before receiving a call from New York that they may have organs for her.
Jean says she and her husband Derek got in their car in Binghamton and headed straight to New York City. Jean was already in a hospital gown and hooked up to IV medications when she received some bad news: The kidney was cystic and unsuitable for transplant. Disappointed, she and Derek made the long drive back to Binghamton.
Ironically, she says, the phone rang again the very next day. This time, it was Jefferson calling to let Jean know there were possible organs in Philadelphia. Once again, Jean and her husband got in their car for another long drive. This time, the trip ended with the successful transplantation of a kidney and pancreas from a donor who was on life support.
More than six months after her transplant, Jean says she would go through the experience again "in a heartbeat."
"It's like getting your life back," she exclaims. "I have more energy than I've had my whole life, at least since I can remember. My blood sugars and diabetes are under control—no more insulin, and I don't have to check blood sugars that often. And my creatinine levels are great.
"How do I feel now compared to how I felt on dialysis? It is a completely different feeling," she says.
Jean lauds the Jefferson program for their support and flexibility—especially since she lives so far from the hospital.
"When you get put on the list, you go to the hospital and meet with your transplant coordinator. I spoke with her, we went over all the tests I had to have done, and I also got to meet my surgeon, Dr. Adam Frank," Jean says.
"After I met him, I went home and had all these tests done. You can have them done at Jefferson or in your hometown, which was great for me," she notes.
And while she didn't take advantage of Jefferson's resources for support, Jean says she wishes she had—and would happily mentor other patients preparing for their transplants: "I kind of put it in the back of my mind because I had so much going on at the time," she remembers. "I didn't really consider making the calls [to people who'd already had transplants]. I figured I could just do the research on my own. Looking back, I really wish I would have spoken to somebody about it. They could have explained the little details to me."
Jean also remembers how much help and care she received at Jefferson following her surgery.
"After the surgery, I had so much support from the nursing staff and all the doctors. They watch you very closely. If anything goes wrong, they're right there immediately to take care of you. It's very comforting to know you're in a safe place and you're well taken care of," she notes.
She encourages other patients to overcome their fears by taking full advantage of the resources at Jefferson.
"Don't ever be afraid to call and ask questions," she concludes. "No question is stupid. The doctors and staff are terrific and will answer anything you need to know."
For more information about receiving a kidney-pancreas transplant or being a living kidney donor, please call 1-888-TRAN.