By Dianne Sudbrock
Born with Cystic Fibrosis (CF), a chronic, progressive, life-threatening illness, Kelly Wever was told she would only live to be 18 years old. She surpassed that statistic, and at age 26 she started getting eligibility evaluations for a lung transplant.
At age 29, she was officially placed on the national wait list for a double lung transplant. Unfortunately, it wasn’t discovered until she was placed on the list that more in-depth testing revealed she was a very unique case — with only a 1% chance of finding a match!
Kelly explained, “A lung transplant is the last resort, therefore you have to wait until the disease progresses to a point that you have no other choice.” But then it becomes a waiting game to find a match, and the window of opportunity is limited. Some CF patients on the wait list get too sick and too weak before a match can be found. In Kelly’s case, it was discovered at this late date that she had a very high number of antibodies in her system. If a donor had any of the same antibodies, it would mean her body would immediately reject a transplant. Her chances of finding a match were 1 out of 100!
The average wait time for a double lung transplant is four months. Doctors told Kelly she could expect to wait 1 to 2 years — but her life expectancy by then was only one year! Kelly endured set back after set back: complications, infections, collapsed lungs, multiple hospitalizations; a blood clot, non-stop coughing, and more.
Kelly said her family’s support was simply amazing. They formed a team called “Breathe Deep” and organized a meal train (Kelly was too weak to cook.) Kelly’s social worker told her she could expect to pay $25,000 out-of-pocket. Her family held fundraisers to help with medical expenses not covered by insurance: a carnival, pizza sales, garage sales, t-shirt sales, a family night out, and more. “Through my family’s amazing efforts, I never had to worry about my medical expenses. I can’t even put into words what that meant to me — such a tremendous gift when you need to channel all your energy to just surviving.”
Kelly was determined to beat the odds. She has always had a positive, proactive attitude, which she credits immensely in helping her fight her disease. When the grind of her daily struggles got her down, she lived for her daughter. “She’s what kept me going when I wanted to give up. I was determined to do everything within my power so that my daughter would not grow up without a mother.”
Kelly also turned to God, and in the book she talks about her faith journey and the strength and peace she received when needed. Despite the emotional care she received, despite taking every pill prescribed, doing every breathing treatment she could, exercising religiously, and her husband’s and family’s endless support, her CF kept progressing.
Three years, 7 months, 9 days.
That’s how long Kelly was “officially” on the wait list. That does not include the 3 years of evaluations and testing before being put on the list.
What a battle!
What a miracle!
Today, Kelly is a bundle of smiles and enthusiasm. She relishes doing things with her husband and family that most of us take for granted...walking her daughter to the bus stop, playing with the dog, riding a bike, and making memories. She still has CF and still follows a strict daily regimen to combat other symptoms of the disease, “But I can breathe! I don’t cough anymore! It has been a life-altering experience!” she says.
Kelly is telling her story in hopes that it might help others get through whatever life-challenges they might be facing, “Don’t give up. Have faith. Keep going.” Kelly also says, “Don’t procrastinate. If you want to do something, do it. You might not get another chance.”