While as a young teenager all I wanted to do was ignore this imperfection I realized that because I was diagnosed at such a young age, I had the opportunity to help.
- MaryKatherine Michiels-Kibler
Five years ago, at age 13, I was diagnosed with polycystic kidney disease (PKD) after a series of visits to the emergency room with severe abdominal pain and vomiting. PKD, which causes cysts to grow on the kidneys, eventually leads to kidney failure and can cause a kidney to weigh up to 30 pounds. I am the youngest person in my family to be diagnosed. PKD is a genetic disease and parents with PKD have a 50 percent chance of passing the disease to each of their children. My mother, grandfather and great grandfather all have PKD.
Not only did I find out I had a genetic disease with no treatment or cure, I also had to learn it was a disease that despite affecting thousands in the U.S. and millions world wide had many unknowns and inconsistencies. While as a young teenager all I wanted to do was ignore this imperfection I realized that because I was diagnosed at such a young age, I had the opportunity to help. Unwilling to accept the feeling of powerlessness when facing PKD my mom and I turned to The PKD Foundation, an organization solely dedicated to finding treatments and a cure for PKD, to get involved in a brighter future for the disease.
Read MaryKatherine's Story
As a kidney recipient, I would encourage people to participate to show donor families and living donors that their gift of life has given us the opportunity to do what we dream about.
- JoAnn Villanueva
The Transplant Games of America are special to sisters JoAnn Villanueva and Suzanne Ruff, and their entire family. JoAnn has PKD, and Suzanne does not. In 2004, Suzanne donated her kidney to JoAnn. "The Games started as a way to show the world that transplants work," Suzanne said. "It is a celebration of life as donors and recipients come together."
Their first experience with the Games came in 1994 when their mother, Joan Gill, participated and won the bronze medal in golf in her age group. Joan received a transplant in 1988 after ten years on dialysis from PKD.
Read JoAnn and Suzanne's Story
When you have a lifelong disease, you have to decide how you are going to let it affect you. I could wallow in self pity, but why? It's my one life. I'm not going to waste a moment.
- Brianna Rodgers
The spring, for many, signals a new start and a perfect time to set new goals for the rest of the year. For 21-year-old Brianna Rodgers of Grapevine, Texas, 2014 is her year to make a difference in the PKD community. "I just want to take the opportunity to do something good," she said.
Flash back one decade – Rodgers was diagnosed with polycystic kidney disease (PKD) at just 11 years old, making her the youngest person in a family full of PKD patients to deal with the disease.
Read Brianna's Story
Our family is really tightknit, and any way we can help them, we're going to do that. I didn't give it a second thought.
- Karli Franzke
Every wedding is a little different - some couples jump over brooms, break glasses or wear blue. For Karli and Cuyler Franzke, an age-old wedding tradition turned into an opportunity to raise funds to support the PKD Foundation. Several weeks before her wedding, Karli and her mother hatched a plan that they kept secret until the big day arrived.
At the wedding reception, when guests began to clink their glasses to signal the bride and groom to share a kiss, Karli stood up and made an unexpected announcement. They would kiss for the crowd, but in exchange for donations to the PKD Foundation. Because of her close relationship with her cousin Brandon and his father Joe, both of whom are diagnosed with the disease, "PKD Kisses," seemed like a perfect idea.
Read Karli and Cuyler's Story
Making a difference in the future of PKD for me and my children has let me take control of the disease.
- Barbara Meskin
Polycystic kidney disease is a family disease. Like freckles and blue eyes, there's a chance that a parent will pass it along to their child. Though Barbara Meskin's family had passed along PKD for many generations, she had no idea that the family disease would impact her right when she was starting a family of her own.
"I shouldn't have been surprised," Barbara said. "But I was."
Initially Barbara was going in to receive an ultrasound as a screening procedure for an insurance policy. At the time she was pregnant with her second child. The ultrasound confirmed her fear that she too had PKD, and the even more immanent fear that she could pass it on to the child she was carrying.
Read Barbara's Story
One of the biggest things that I learned through all this is not to take your life for granted. Do what you can when you can; don't wait.
- Trisha Muldoon
In October 2008, my husband Jason and I found out that we were expecting our first child. In March 2009, we found out that we were having a girl, due mid July 2009. At that same appointment our doctor said that he thought she had PKD. Two days later we went to see the specialist who told us that there was no sign of anything wrong with her kidneys. I continued to have appointments and in June 2009 my husband and I went back to the specialist. At this appointment, he informed us that I had no amniotic fluid and now he saw something wrong with her kidneys. I was sent home to pack a bag and then head to the hospital. My wonderful and beautiful daughter Samantha "Sami" Lynn Muldoon was born at 12:53 p.m on Tuesday June 9, 2009.
She was six weeks and one day early, weighing 5 lbs. 4 oz and 17 inches long. She was transferred to the Children's Hospital in Los Angeles. A couple of hours later, I went to the NICU to watch them load her up to be taken to Children's, hoping that she would make the trip and make it through the rest of the night. Sami spent the next 140 days at Children's with us driving down every day to see her.
During her stay there she endured a lot. We found out that she had ARPKD.
Read Sami Lynn's Story
Kids with PKD have to know that they aren't alone in the fight. So many other patients will fight with them and be positive influences in their life.
- Kerilyn Benoit
The average teen is more concerned with school, friends and a ride home from volleyball practice than the health of their renal system. For Kerilyn Benoit, health is at the forefront of her worries. At just 13 years old, Kerilyn was diagnosed with polycystic kidney disease (PKD) after an ultrasound for an abdominal cyst turned out to be more serious. Doctors detected cysts on Kerilyn's kidneys, and with knowledge of her family history with the disease, it was quickly determined that she too had PKD.
Read Kerilyn's Story
I didn't want my uncle to be taken away so I just stepped in and helped.
- Candi Zitzka
Many families carry genetic burdens of disease. Illnesses like breast cancer or chronic issues such as high blood pressure are frequently attributed to family history. For Candi Zitzka, her family’s burden has been the debilitating disease of polycystic kidney disease (PKD). When Candi started seeing family members affected by the disease, she took matters into her own hands and decided to give an incredible gift: her kidney.
Read Candi's Story
If my story can help somebody else get diagnosed, or help them learn to live with the disease, I want to share it.
- LeeAnn Hujanen
LeeAnn Hujanen went through a dramatic turn of events that led to her PKD diagnosis on April 11, 2013. Adopted as a child, LeeAnn was unsure of her biological medical history, and didn't know PKD ran in her biological family. In 1999, while she was pregnant with her oldest daughter, the ultrasound tech noticed spots on her kidney. Her obstetrician said not to worry about it, and that they would keep an eye on it. So LeeAnn put the kidney spots out of her mind.
Read LeeAnn's Story
My family's transplant journey began 15 years ago with my grandmother Jean, who was just days away from beginning dialysis to combat the devastating renal failure caused by PKD.
- Stephanie Bost
In 1997, she received a phone call that would change her life. Transplant doctors discovered that a perfectly matched kidney had been found and Jean received her gift of life that same day. For our family, which includes her husband, Harry, three children, two daughters-inlaw and four grandchildren, that day brought a huge sigh of relief, but our family's transplant journey was just beginning.
In 2010, Jean's oldest son, Jeff, began to experience symptoms of renal failure and started the long process of getting on the kidney transplant list himself. Jeff and his siblings had known for many years that all three of them had the same disease as their mother. Jeff's wife, Kathy, was tested to be a living donor for Jeff and amazingly was a close match. The transplant took place in 2011.
Read the Bost Family's Story
Your time will come. Maybe not tomorrow, or next month, or next year — but it will come. Never lose hope.
- Carol Mainolfi
That's Carol Mainolfi's advice to anyone who is waiting for a kidney transplant. She would know – she received one after three years on dialysis and one failed transplant.
"I feel like a different person," said Carol, who received a kidney through a paired kidney exchange last June. "I am slowly getting my life back. I'm appreciating the freedom from dialysis and a second chance at life."
Since the 1980s, Carol's health had always been up and down, with frequent urinary tract infections (commonly known as a UTI) leaving her hospitalized on more than one occasion. At the time, her doctor told her she had sponge-like kidneys that were susceptible to infections and were symptomatic to UTIs. He had also told Carol her kidneys were large, most likely because "she was tall."
Read Carol's Story
We had finished the nursery. We had two cribs, red and blue bumpers, boy and girl clothes all neatly folded away in their drawers. Rows of blue blankets and pink spit up cloths…We were ready to do this.
- Sara Mann
In 2010 Sara was working as a backup singer for Miley Cyrus and the current star of the hit NBC series SMASH, Katherine McPhee. She was living her dream as a musician in Hollywood with a track record of success in the music business and had just learned she and her husband were expecting twins.
"I'll admit when I found out I was having two babies I was terrified. I mean, you're talking to a girl who has been on a diet since she hit puberty. Of course, I was also afraid of the normal 'I'm having twins' stuff. Like, 'How can we afford this,' 'How do I hold two at once,' 'How can I love two,' 'How am I going to breastfeed two' etc. All of that quickly disappeared though when I started to feel them move around inside of me."
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My husband is the best. He took those marriage vows to heart, in sickness and in health, only thanks to him I'm not sick anymore!
- Jan Blaylock
Larry and Jan Blaylock first met when they were teachers at the same school. Now married for nearly thirty years, they enjoy spending time together gardening and cheering for their favorite team, the University of Kansas Jayhawks. Aside from sharing many of the things that husbands and wives share, Larry and Jan share something very special in common: a kidney.
Jan suffered from PKD and knew it was only a matter of time before she would need a kidney transplant. PKD was prevalent in her family; her Mother died at age 50 from the disease, and Jan's two brothers also had it. When Jan reached stage four of the disease, it was her younger brother, currently on a waiting list for a kidney, who first gave her the idea of considering a living donor. Jan and Larry decided to undergo testing to find out if Larry was a compatible transplant match.
Read Larry and Jan's Story