Raising a child means giving of yourself. For most of us, this idea means offering advice, guidance, encouragement and, when necessary, gentle reproach. But when Carol Offen’s son Paul began to experience deterioration in his kidney function, what she needed to give became more concrete.
Paul needed a new kidney and Carol was a match.
It’s been more than 10 years since Carol gave a kidney to her son and both have thrived since then. Carol describes the experience as “the best decision I have ever made – and I don’t just mean for Paul. It’s the most noble thing I’ve ever done.”
In 1999, Paul was diagnosed with a form of glomerulonephritis called IgA nephropathy, a kidney disease that causes an antibody called immunoglobulin A to lodge in the kidney. Over time, buildup of this antibody can affect kidney function.
“It needed to be monitored” remembers Paul, “but they were not expecting it to lead to kidney failure in the near future. Then in 2004, during routine lab work, the numbers got a lot worse. I needed a kidney transplant but dialysis would keep me going in the meantime.”
Life on dialysis was challenging and required Paul to spend part his day, three days every week, at the dialysis center.
“Dialysis was, at best, a temporary solution for Paul,” said Carol, “and he had a really rough time with it – nearly half a day tethered to a machine three days a week. He had to watch how much liquid he took in, what kinds of foods he ate. He couldn’t travel without making arrangements to find another dialysis center. He was very, very dependent on it. It was like he was under house arrest.”
Dialysis kept Paul alive, but from the first his doctors knew that transplant was going to be a more viable option.
The whole Offen family jumped at the chance to help Paul and they wanted to be tested for compatibility. Carol’s husband wasn’t a good candidate because he had a history of kidney stones, and her daughter was too young to be considered. Her sister and brother-in-law were both ruled out because they were the wrong blood type – something that today might not have been a problem thanks to advances in transplant options, including kidney exchanges or paired donation.
But Carol, a self-described wimp who faints during flu shots, was a match. Her initial reaction was “of course!” but she admits that after her initial enthusiasm accepting the idea took a little time.
“I went through every stage of denial and acceptance,” she said. “At about the same time I was considering donating my kidney to Paul, my elderly father came to live down here, and I was his primary caregiver. On top of that I was working full time and, of course, we had a teenage daughter. There were times that I wasn’t sure I’d be able to do this and take care of all the things that I needed to.”
Eventually, though, her doubt became resolve.
“I don’t know exactly when it happened; coming to this decision was a process. But at some point I knew that this was something I wanted to do and that I needed to do.”
Once she had made her decision, Carol was put in touch with a donor coordinator. The coordinator’s job is to serve as the donor’s advocate from the moment an interest is expressed in donating until two years after the transplant.
Amy Woodard, RN, who currently serves as the living donor coordinator at the UNC Center for Transplant Care, explains the process required to be approved as a living donor.
“Donors answer a few screening questions and fill out a health questionnaire. If they pass those we give them a compatibility test. The donor then has to meet with a social worker, a transplant psychologist and consult with some of the same specialists the recipient meets with.
“All of these consultations are in place to make sure that they are safe to donate – physically, psychologically, financially. Once the donor completes all their evaluations, I review their case with the donor committee. If the committee approves them, I make the arrangements for donation.”
All these tests – which, for Carol, included EKGs, pulmonary function tests, a CT angiogram, stress tests and “lots and lots of blood tests” – were made easier by “this whole team of people at the hospital who are rooting for you,” said Carol.
But despite this support, there were some parts of the process that continued to be challenging for her. “The nurse coordinator would prescribe lidocaine to rub on my arm before a blood draw. I certainly got better at it but it was never easy for me.”
Then the day finally came. Carol’s kidney was transplanted to Paul.
Carol’s recovery was relatively quick, which was made possible in part by the fact that surgeons are able to remove a donor kidney laparoscopically – i.e., through a small incision that can be easier to bounce back from than a large abdominal incision. She was able to go home after just a few days.
After surgery, Carol had access to a donor coordinator by phone 24/7; she had one post-op checkup at the transplant clinic after a month. After that she was cleared to go back to work and resume a normal schedule.
Paul’s road to recovery was slightly longer but he knew it was necessary for him if he wanted the dialysis treatments to come to an end. “I stayed in the hospital around five days. Over the days and weeks after the procedure, the tubes were gradually removed and my life got closer and closer to normal.”
Because he is a transplant recipient, Paul still takes immunosuppressants to ensure that his immune system and his mother’s kidney are getting along, and he needs to have a blood draw every six weeks to monitor his kidney function. Carrie Frueauf, RN, has been Paul’s post-transplant coordinator since he received his mother’s kidney.
“He has made tremendous progress in the decade since his transplant. He was very anxious when he was first transplanted; it was a whole new routine he had to learn, and he has done great. His kidney works very well,” said Frueauf.
Today Paul says his mother’s kidney has improved his life.
“I'm able to work more, travel more, enjoy life more. By no means is it easy – there are a lot of things to keep track of, like medicines, appointments, protection from getting sick – but it is so much better than dialysis. I'm glad that she was willing and able to do so. It strengthens our bond.”
Carol has also recovered well.
“My kidney function is fine. When you have one kidney the remaining kidney gets bigger and stronger to take over the function. It really isn’t much of a factor in my life other than that I have my kidney function checked once a year during my annual physical with my primary care provider,” she said.
Much of Carol’s time these days is taken up with advocacy for the cause of live donation. She participates in kidney walks along with her husband and Paul, writes op-eds and is working on a book with a kidney recipient to share their experiences with organ donation and what they learned.
Her goal, she says, is to demystify the process and encourage others to consider becoming a donor.
“I always like to admit that I’m a wimp when it comes to medical stuff, because I figure if I can do it, anyone who is healthy enough can do it. That’s my message and I feel very strongly about it. Anyone who is remotely interested should look into it.”
Find out more about becoming a living donor here.