Welcome to the
community
With the help of our communities in cities across the country and beyond, we provide a forum for patients who want to join in the fight to find treatments and cure for PKD.
Connect with us to find out how you can make a difference in the lives of thousands in the U.S. and millions worldwide.
|
|
Registration for the 2024 Walk for PKD is now open! Find your walk at walkforpkd.org. |
The PKD Foundation is excited to the announce the newest cohort of Centers of Excellence, Partner Clinics, and Pediatric Clinics. If you are looking for the right healthcare providers to help you manage living with PKD, visit our Centers of Excellence page to learn more about the program and to find a Center of Excellence, Partner Clinic, or Pediatric Clinic.
There’s a new way ADPKD Registry participants can step up to provide hope today, and for future generations. The nation’s first dedicated ADPKD Registry is now also one of the first patient registries of any kind to integrate patient-provided health records. Share your health records through your provider’s online portal with a few simple steps on the ADPKD Registry.
Now, as always, the PKD Foundation is committed to our mission of giving hope, advocating for patients, and building a community for all impacted by PKD. We'll continue supporting our community by providing important resources and timely updates on social media. If you have questions or need help navigating this unprecedented health crisis, we are here for you. Email or call (844) PKD-HOPE.
Deanna Bohlen
PKD Connect Ambassador
Contact your local PKD Connect Ambassador to learn about local activities and connect with others in your community that understand what you are going through.
I first learned I had Polycystic Kidney Disease as a result of an intramural basketball game injury. I was hit in the back and ended up in the ER. The ER doctor saw a large blood clot in my kidney, and I asked if I could be bleeding into a cyst. I knew that my mother had the disease, but I had not been tested. Found out that day I had it.
My Mother was the only one in her family that had it, neither parent nor siblings. None of my cousin’s have the disease either. I guess I drew the short straw in the genetic pool. I have never really had too many issues outside of the usual high blood pressure, pain in the back, or the standard issues that come with the disease.
September of 2019, after a long talk with my Nephrologist, he suggested that I contact a transplant center to begin the process of a transplant as my GFR had dropped to 11. I chose Houston Methodist Transplant Center (HMTC) to have my transplant. I chose it for many reasons, but the geek in me was a huge fan of Dr. Michael DeBakey, and that is where he did his transplant surgeries. I had to go there. At the end of July 2020, I had surgery to place my peritoneal catheter, and began home dialysis on my own at night a few weeks later.
September 4th is National PKD day, I decided to post something to my Facebook page about the day and what it meant to me. I ended it with “if anyone has a spare kidney, I need one”. Two of my cousin’s saw it and made the decision that they would donate a kidney. One was ruled out for health reasons. The other after testing, we found out that she was a near perfect match. A 5 out 6 markers matched. The doctors at HMTC were excited about it. On June 3, 2021, I had a double Nephrectomy and 12 days later, June 15th, I had my kidney transplant.
I decided to become a PKD Connect Ambassador as I often felt like I was an island in this journey. Did not know anyone around me with the disease. I do not want anyone else with this disease to feel that way. I want them to know that there are resources, mentors, people who genuinely care and understand what they are going through, will be going thru to transplant and beyond. It truly is a journey.
Page last updated February 2024
