Janet Bryner is on a mission to find a cure for a disease that affects 600,000 people in the US. Most people don’t even know it exists. It’s Polycystic Kidney Disease (PKD) and she knows it all too well.
PKD causes clusters of fluid-filled cysts to develop within the kidneys, ultimately causing them to fail. There is no cure. Janet’s husband, Chuck, passed away in 2009 at the age of 42 from its complications and all four of her children, ages 19 to 27, are living with PKD.
“When Chuck was 18 years old, he was diagnosed with high blood pressure after passing out in the shower. The doctor said he may have had mini-strokes too. Then, in his mid-20’s, Chuck had a stroke,” Janet said. The high blood pressure and strokes were actually symptoms of a much bigger problem.
When he was 32 year old, Chuck was working at a manufacturing plant and as was in the middle of a 12 hour shift when he started to have chest pain. Determined to finish out his work day, Chuck completed his shift and drove himself to the hospital. “That’s how strong of a work ethic this guy had,” Janet said.
It turned out Chuck had a heart attack and had to have quadruple bypass surgery. It was all caused by something he didn’t even know he had – PKD. His kidneys were failing him.
The year was 2001 and before it was over, he would have his gallbladder removed and would begin peritoneal dialysis at home. Janet was trained to administer his treatment and other medicine through a tube three or four times a day.
With four children and medical supplies that included needles lying around, Janet said her biggest worry was keeping the kids safe and the environment sterile.
“During his dialysis treatment, Chuck developed pancreatitis from a bag of solution that was used to clean out his kidneys. It had been contaminated in the manufacturing process. He nearly died as a result. When his condition worsened and he required hemodialysis at a clinic, Janet had to quit her job at a day care to travel and be there for the more than four hour treatments he received three days a week.
Pillars of Support
Janet was not only a mother and a wife, through Chuck’s treatments, she was the caregiver and his advocate. “I used to write down everything the doctor’s said. It’s the best thing to do. That way, I could always go back and question if something wasn’t right,” she said.
While Chuck received good medical care, there were also missed diagnosis and medical mistakes that happened along the way. But Janet said he didn’t get bitter. Instead, Chuck put his energy into being as strong and as well as he could be for his children.
“Whenever we were having a bad day, I’d call the kids as we were arriving home from his dialysis treatments and have them meet us at the car to help carry his bags into the house. Sometimes, he was so weak that he would have to lift his own leg to get up the front porch steps. The kids were right there and my sons walked him up the steps,” she said.
Chuck wouldn’t let his children know he was having a bad day. But Janet knew. “When he felt like giving up, we’d talk for hours and I’d tell him jokes to make him feel better. There were days I would get down too, but I never let him see it. He was going through a lot more than I was,” she said.
The pillars of support on this uphill climb were the family’s Christian faith and an unbroken chain of love. Janet commented, “I can’t even imagine going through this without having faith in God. You pray and He helps you through it.”
That faith would carry them through the realization that all four of their children had PKD too.
The Children’s Turn
“When Tiffany was in high school, she developed urinary tract infections and she complained that her back was hurting. She was given an ultrasound and we learned she had PKD. The doctors wanted the other children tested too and sure enough, Anthony, Stephen, and Tabitha also tested positive,” she said.
Each of the Bryner children not only has kidney disease, but a host of complications along with it – some related to the disease, some not.
Tiffany, age 27, has polycystic kidneys and ovaries, high blood pressure, endometriosis, and has had her appendix and gallbladder removed. She is married and has one child.
The other three children all live at home. In addition to PKD, Anthony, age 24, has arachnoid cysts on the brain. He excels in art and has designed his own video games. Stephen, age 21, who also has artistic talent, has PKD, high blood pressure, ulcerated colitis, diverticulosis and asthma. And Tabitha, age 19, has polycystic kidneys and ovaries. She is considering attending school to become a dialysis technician and is the only child who does not have high blood pressure.
“I want my children to know that God made them the way they are and that he will see them through it. They also know there are others worse off than they are,” Janet said.
I’ve also taught my children that it’s important that they look at life through other people’s perspectives. When my youngest child, Tabitha, was six years old, we got involved with a youth group we were introduced to through Connellsville Community Ministries and Rendu Services.
The group was made up of high school students from Philadelphia who came to the area for one week each summer to help those in need with such things as house painting, planting flowers, and making repairs. Each summer, when they would come, we’d go out with them for the week to help.
By doing this, my children could see that there are people who have no income and that not everybody has two parents at home. They didn’t realize how fortunate they were to have a mom and dad to take care of them. At the end of the week of volunteering, we all gathered around a bonfire to sing and pray,” she said.
A New Found Mission
“When Chuck passed away in 2009, the dialysis center sent me a letter that said they had made a donation to the PKD Foundation. I didn’t realize the Foundation existed and researched it online. I saw that people around the country were doing PKD Foundation walks to raise money for a cure.
Three years ago, I said to our family friend, Sam Giles, ‘I think we can do this too.’
Janet and Sam organized their first “Walk for PKD” in Connellsville, PA in memory of Chuck in 2010 and have so far raised nearly $10,000 for the PKD Foundation. The two mile walk is held each August at Yough Park in Connellsville on the scenic Yough River Trail.
There is no cost to walk as participants are free to make a donation to benefit the PKD Foundation and to purchase special bracelets, pins, tee shirts, and hats as well as to buy chances on donated raffle prizes.
Raising Awareness and Funds for a Cure
Most people can say they know someone who has had heart disease or breast cancer, but having been impacted by a family or friend with kidney disease is another story. Janet experienced this first hand went she went out to seek walk sponsors.
“When I asked a couple of people for their support, they stepped back, asked if the disease was contagious and said, ‘I’m not interested.’ They didn’t mean to be rude. They just didn’t know,” she said.
This lack of awareness is Janet’s determination to work even harder. While PKD is often inherited, it isn’t always the case and it can go undiagnosed for many years as it did for Chuck. Many patients experience kidney failure and require dialysis and a kidney transplant.
Now in its third year, Walk for PKD-Connellsville has grown in sponsors, donations, volunteers, and walkers – some of whom have the disease. Still, much more work needs to be done to raise awareness and the needed money to fund the research that could lead to a cure.
Janet knows it’s a tough road, but one that she’s willing to take not only for her late husband whom she deeply loved, but for all those affected by PKD. And she has four very good reasons to never give up the fight.
“My children are my life, my world, my everything! I will do everything in my power to find a cure for them and others afflicted with this disease. With God by my side I know I can do it. He gives me strength when I feel weak. I know through him all things are possible,” she said.
For more information or to find out how you can help, call Janet at 724-434-4821.
“People who Inspire” is a series to shine a spotlight on people who have done extraordinary things. If you have experienced a great adventure, survived a life-threatening illness or trauma, overcome obstacles in achieving a goal, or have made an impact on someone’s life, I’d love to hear from you to share your story. Email me at firstname.lastname@example.org so that we can inspire others to be unstoppable in the pursuit of their goals.