My name is Perri Bartley, I have polycyclic kidney disease (PKD) and I’m an extremely blessed woman! Sounds a little odd to say that, but this is my story and you’ll see that it’s true. I learned I had PKD when I was 21-years-old. That was when we learned I had inherited it from my mother.
I led an active life raising two young boys, riding horses and running a trail ride business. Every now and then I would land hard on the ground and pop a kidney cyst, but that didn’t slow me down much. Eventually I bought my own piece of land, put a house on it, began boarding horses, gave riding lessons, and added dogs and alpacas to my world.
At the age of 49, I began to fatigue easily. I couldn’t quite do the trail rides and manage 24 horses nearly as efficiently as I did normally. At the end of the day, I found myself crawling in the door of my house and collapsing on the carpet for a three hour nap. I finally called the doctor, who’d diagnosed me nearly 30 years earlier, for an appointment. I was in renal failure.
I composed an email to my clients explaining that I had no idea what was going to happen over the winter and asked for prayers. That’s when I realized how powerfully people can respond when asked for help. Over the next couple of months, I had 30 people step up and call Mayo Clinic to be tested for me. Horse people, alpaca breeders, family and close friends all tried to help. I was humbled beyond words.
One evening, I got a call from the mother of two girls that rode with me. Mary Jo Sibley informed me that she would be my donor! I was flabbergasted and tried to argue her out of it, referring to her busy family and job situation. She just laughed! She’d already quit smoking so she could donate. She had already done most of the testing and spoken to her doctor. She is a powerful woman and so the decision was made.
A few months later, the transplant was completed. The incredible bond that Mary Jo and I formed is a blessing I will cherish all my life. The operation went well. At first, nearly immediately, my awesome immune system kicked in and decided to destroy the intruder in my body. My team of doctors quickly rushed into action. Every treatment at their disposal was tried. Chemo drugs, plasmapheresis, study trial drugs for an entire year we beat up my body to no avail.
My kidney was losing the battle badly at the one year mark. My doctor said there was nothing else medicine could do and that my kidney would fail within the next year. Well, I’m a stubborn, hard-headed woman of faith. I went home and wrapped my blanket of prayers around me every night. I went back to Mayo for my two-year evaluation. The doctors were astonished. My numbers were exactly what they were a year prior. And the third-year, the same. Fourth and fifth years still the same. My doctors said it wasn’t possible and they had no explanation. Finally during the ninth year that kidney just couldn’t do it anymore so I needed yet another transplant.
Nearly everyone I knew had tested to be a match for my 2010 transplant, but life brings changes. My perspective donors now had high blood pressure, asthma, health troubles of their own. I put the word out again, feeling strange, asking again for such a gift.
Cindy and her two daughters had been riding with me for years. Unbeknownst to me, Cindy went right to work on the treadmill and worked off 40 pounds, just so she could be a donor. It turned out that she was my best match at that time, so we did it.
In November 2019, yet another living angel saved my life. This time the surgery AND the recovery were simple. None of the complications of the first transplant seemed to bother me. That being said, three short years later, my body has again damaged this blessed kidney beyond repair. I am mourning her valiant efforts at keeping me alive.
My sense of gratitude is overwhelming!
- In the last 13 years,
- I was able to see my sons grow into the men I’d always prayed they would be.
- I was able to see my grandchildren born to run and play and laugh.
- I was able to stand beside my son while he had his TWO transplants.
- I have seen and hugged the most remarkable women on earth. I am a better person – because I have ANGEL PARTS inside me.
Mary Jo Sibley, Perri’s first living kidney donor
“Several years ago, I was given the opportunity to give the gift of a kidney to a woman I had found to be of outstanding character. I didn’t know much else about her at the time.
I faced considerable criticism from friends and family for the decision, at the time. I now know this was because of a serious lack of education and a lot of misconceptions about donation. Luckily, I’m not easily swayed.
Not only was the surgery successful, it was, simply put, the easiest of medical procedures that I could’ve imagined, thanks to an outstanding staff and caregivers. I went back to work (a very active job) after only a few days, and could hardly believe how simple they’d made it.
If I had a single wish, it would be to have the super power of being able to regenerate organs, as I’d make it a yearly vacation. I might enjoy a trip to the mountains, but not near as much as I’d enjoy keeping a person alive for awhile. The world is a better place when we share, and this works.”
Cindy Schweighart, Perri’s second living kidney donor
“Donating an organ is an honor and a privilege. Not only do you get the best overall physical checkup of your life, you get the thrill of giving a part of yourself to someone you love. I so wish that kidney could grow back so I could donate again. It was an amazing experience from start to finish.”
Three times a charm?
John Snyder is Perri’s friend who volunteered to enter a kidney paired donation to support Perri. He is awaiting his kidney donation surgery, and then Perri will receive her third kidney transplant.
“This is not only a gift to Perri, but a gift to my entire family. Together we’ve realized how precious life actually is much more so than all the other little things that sometimes we try to make into big things.
This journey has taken on an energy of it’s own. I’m so excited to help someone who then will help Perri — I can’t do it fast enough! My giving this kidney will help a person from the “pool”, which will in turn help their loved ones. The donor who matches Perri will then help her and her kids, grandchildren and friends.
The very fact that I, at 70-years-old, can make this kind of difference in the world, humbles me. I struggle to find the words to express the joy and drive that I feel about donating. I’d do it again in a second.
Everybody should do this at least once in their life!”
A family changed by PKD and organ donors
Read Perri’s mom’s story: Connie Foster: My sister’s gift
April is National Donate Life Month
This month is a time to celebrate the generosity of those who have saved lives by becoming organ, eye and tissue donors, and to encourage more people to register! Learn more about UNOS’ lifesaving work and ways you can get involved.