Share Your Story

By sharing your story with the PKD Foundation, you can help put a human face on a widely unknown disease. We work to amplify public awareness through education, but your experiences can paint a more powerful picture of what it’s like to live with PKD. Below are a few featured PKD stories. Want to share your personal experience with PKD? Click below to share your story.

Share Your Story

If you'd like to share your story over the phone, please call 1.800.PKD.CURE (753.2873) and ask for Sara Kiszka, Marketing Coordinator for the PKD Foundation. If you have already written stories or produced videos to share, please send them to pkdcure@pkdcure.org.

 

 

Lumps and Bumps: One Family's Remarkable Transplant Journey

QuoteMy 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

Bost Family

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 rest of the Bost Family's story


Never Lose Hope

QuoteYour time will come. Maybe not tomorrow, or next month, or next year — but it will come. Never lose hope.
- Carol Mainolfi

Carol and Matt 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 the rest of Carol's story


A Mother's Love

QuoteWe 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

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."

Read the rest of Sara's story


Sharing a Kidney and a Lifetime of Love

QuoteMy 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

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 the rest of Larry and Jan's story

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©2014, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.

©2014, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.

The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.
National Headquarters: 8330 Ward Parkway, Suite 510, Kansas City, MO 64114. Phone: 1.800.PKD.CURE
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Founded in 1982, our vision is that one day,
no one will suffer the full effects of polycystic kidney disease.


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