Holly Jernigan and her parents, Floyd and Barbara Jernigan, of Rolla, are searching for a living kidney donor. Holly was born with only one kidney due to having Williams Syndrome, a genetic condition that brings with it a host of medical issues.
For several years, her kidney function has been declining, and her kidney is now only about nine percent functional. To stay alive, Holly needs a kidney transplant. Her only other option is dialysis treatments, which could possibly keep her alive another five years.
Dialysis would be three times a week, for approximately four hours at a time, and she would remain on her already restrictive diet (some vegetables, some fruits and white rice.) A transplant would offer her freedom, a more “normal” diet and the ability to live a longer, healthier life.
“A transplant would also give me more time to do what I enjoy most, like spending time with, talking with and sharing hugs with family and friends and continuing volunteering,” Holly explained. “And I could drink hot chocolate again.”
In November, her family went to the Mayo Clinic to explore a possible transplant for her. Holly had to be approved by a team of doctors at their Transplant Center. This was after a series of tests that would challenge anyone's outlook, but Holly remained upbeat.
The Transplant Team met just after Christmas, and found her to be an eligible candidate for a transplant. That decision added her to the National Transplant waiting list for a kidney from a deceased donor, with more than 100,000 other people, and an average wait time of three to five years.
Holly has blood work done every six weeks and hopes that her diet and lifestyle keep her kidney function steady in the hopes of avoiding dialysis. And she continues to hope that a living donor will step forward.
A living donor improves her chances for long-term success with the new kidney, as it typically lasts longer and has better function. And, the transplant could happen a lot sooner, hopefully before her kidney fails completely. The transplant team told the family that if they can find a kidney for Holly before she is forced to begin dialysis, her chances of a successful transplant increase dramatically.
“Asking a family member or a friend to consider donating a kidney to Holly is difficult for her and us,” said her mother and father but it greatly improves her chances. “We certainly understand a donor will face fears about the surgery and have questions about what living with one kidney will mean for them.
Here's some basic information about kidney donation they received from the National Kidney Foundation:
• You only need one kidney to live a healthy, long life.
• Most donor surgery is done laparoscopically, meaning through tiny incisions.
• The recuperation period is usually fairly quick, generally two weeks.
• The cost of your evaluation and surgery will be covered by our insurance. The hospital can give you extensive information on this.
• You will have a separate team of healthcare professionals to evaluate you as a living donor. Their job is to help you understand the risks and benefits and look out for your best interests.
You can also initiate the process, and get more detailed questions answered, by contacting the Mayo Clinic's living donor coordinators via the donor website: mayoclinic.org/livingdonor and click the link to the Health History Questionnaire, Mayo Clinic, Rochester, Minn., or talk to them by phone at 866-227-1569.
Additionally, the family wishes to thank those who have filled out the Mayo Clinic Questionnaire for being a kidney donor.
“We’ve been told by some of you that you didn’t get a response,” said Barbara. “Holly’s transplant coordinating nurse said that if you didn’t get a response, then you should call 866-227-1569 to see if the questionnaire was received.”
You don’t have to be an exact match to help Holly get a kidney. For those considering donation, Mayo has a program called Paired Donation.
“If someone is willing to give me a kidney and we don't match, the doctors will find another donor who does match me, and give my donor's kidney to someone else who matches them,” said Holly. “I am really hoping that someone who may have considered donating, but thought they wouldn't be a match, will reconsider.”
Will Zwikelmaier, a family friend, went through the process but was unable to donate. He is willing to talk to anyone who is interested.
“I have been through the entire testing selection process. I am happy to talk to any of you that want to know more. Please consider it. We only get one life. Make it count. Spread your love in a real and tangible way,” said Zwikelmaier.