Thankful to Have PKD

As I proudly held the microphone and looked out at the crowd of Denver Walk for PKD participants, I asked, “Those of you with PKD, please step forward.” I watched the crowd separate into two sections as those affected with PKD walked away from their friends and loved ones and stood in front of the group. “By a show of hands who has been on dialysis?” I asked. A few joined me in raising their hands. I followed that by asking, “Please raise your hand if you have received a kidney transplant.” A handful of walkers and myself raised our hands. People in the audience cheered and clapped for the gift of life we have been given. My misty eyes scanned across the front row of walkers as I saw a mother and daughter with PKD– my dear friends Jody and Lauren Balaun– embrace each other. At that point I got choked up, as I could feel their love from where I was standing. I wished I could have embraced my Mom at that moment. My voice quivered as I acknowledged the PKD fighters in the front row. I then gave a special thanks to the friends and family standing behind their loved ones with PKD, as they are a vital part of our lives. We could not do it without their support, love and dedication.

As my teary eyes connected with other emotional PKD friends in the audience, it made me thankful to have PKD. It is thanks to the Balaun’s that I was standing before the Denver Walk for PKD sharing my story. Jody and I met after she heard my story during the webinar I did for the PKD Foundation and she now follows my blog. They so graciously used their frequent flyer miles and opened their home to me. They are such a special family and I am grateful to now have them as part of my PKD family. I know I have just made another life-long friendship thanks to my PKD.

During the weekend we talked about our PKD, did some sightseeing and made amazing memories. It is hard to believe that we have only known each other for a few months. But that is the special thing about people with PKD. We are all kindred spirits. We get it. We have an instant connection and bond. Friendships like theirs helps to heal all of the pain I have endured from this disease. Each wonderful experience I have had, because of living positively with PKD, is one-by-one replacing the bad memories of the days I was fighting for my life.

I was grateful to be one of the more than 50 people who were on Jody’s “Dragonflies” team. What a wonderful feeling it was to cross the finish line healthy, happy and smiling with such strong supportive friends. I looked upward to the beautiful blue Colorado sky, stood still for a few seconds and closed my eyes. As the sunshine warmed my face, I smiled as I replayed the end of my talk that morning, in my mind. As I concluded my speech to the Denver Walk for PKD participants, as part of their kick-off ceremony, Jody yelled, “PKD Will Not Beat Me!” Then others chimed in and shouted, “PKD Will Not Beat Me!” My heart was overflowing with joy, because together we are encouraging each other to never lose hope and we will END PKD!


  1. Amy Knox

    My name is Amy Knox. I have PKD. My father as well had PKD. He is no longer with us today but his spirit lives on in me every day! He died at the young age of 66 but not after a great and long fight. He was on dialysis for 7 years and than had the awesome gift of getting a kidney from his twin brother. His kidney gave him a second chance at life and he survived 18 more years. We are Jewish and in the Jewish tradition 18 means life. In Hebrew Chai!!! What a blessing that was. My father unfortunately suffered from other ailments as well. There have been many break through over the years and many of the medications my father was on they do not even administer today. The advances are amazing and I have seen them over the years. Especially now with me having the disease. If you ever saw my father you would wonder how does he does it. Towards the end you almost wondered how is he still alive. I am not saying this to depress you I am saying this because if you knew Mel Cohen my dad he never once asked why or even complained. He fought till the. Rey end. I even wrote that in a poem in his memory at the funeral. His spirit and his fight is what gets me through every day.

    I am on different medications for the disease and yes like every body have some awful days. I am not on dialysis yet but my numbers are declining rapidly. My sister is presently getting tested to see if she is a possible candiate to be a donor. I have a 3 year old boy and worry if he has inherited the disease. I keep the faith that with all the support and technology that by the time he is older there will be a cure!! We need to keep strong support one another and keep the fight going for PKD. We can fight this and we will beat it!!!

    • Valen Keefer

      Dear Amy,
      Thank you so much for sharing your family history of PKD and introducing all of us to your amazingly strong father. That is wonderful that you have such an amazing role model to keep you fighting.
      I share the same hope for the younger ones like your son that there will be a treatment and or cure and they will not have to endure what we have.
      Thank you very much for sharing your strong, encouraging and positive attitude with all of us!

  2. Arla Sullivan

    Dear Amy,

    You have made my day.. I also have PKD and getting really close to a transplant. Your father courage will follow me to the OR. I vowed today never o complain, thanks to your Dad…

    Blessings to you and your family,

    Arla Sullivan

    • Valen Keefer

      Dear Arla and Amy,
      Makes me so happy to hear that by you sharing your story that you have encouraged Arla to keep fighting as well. The support we can gain from each other is priceless. One mission for my blog is to bring those suffering from PKD together to provide each other with hope, strength and courage. Mission accomplished today! 🙂 Arla, wishing you all the best with your transplant. Never lose hope!

  3. Amy Knox

    Dear Arla

    I am happy that my story gave you inspiration. That brought tears to my eyes. I will be thinking and praying for you as you go into surgery in the near future!!! Good luck to you!!

    Take care

  4. Jennifer Reynolds

    Hi Valen,
    Thanks for sharing your walk stories and keeping all of
    Our family inspired. It is very hard not having a walk,
    I pray that next year we can travel to one as a family
    As the kids want to feel that they are fighting for a cure!
    Its very hard to watch my husband and 3 boys and have
    Already lost our daughter pass away from the fight for
    PKD and hold out hope when my family is so sick right
    In front of me and I can’t fix them. However reading
    Your stories and others keeps me going and I thank you
    And everyone who shares for that! Take care.

    • Valen Keefer

      Dear Jennifer,
      I admire you for your extreme courage. You and your family have and continue to endure so much because of PKD. You are all so strong. I’m so sorry to hear that there is not a walk close to you and hope that changes next year so you can all experience that support together. Thank you for following my blog and I’m so thankful to hear that reading my stories and others helps to keep you going. xo

  5. Connie Moss

    Well, as you know, I just did my 1st walk this yr. Was diagnosed just April of this yr. No known family history for my mom is adopted. So the news was quite the shock. Walking into this blind. Learning as I’m going. Met wonderful people from my walk this year. Listened to the stories. Was not at all ready for some of the news. Had to hug this one lady I talked with at the BBQ after. She mentioned something that caught me off guard. Could only hug her right away before she could see my tears. I cried. I have 4 sons… I walked this yr for the PKD community and also for the future of my boys. Keep writing Val and all others. I need your stories to keep me strong. I do apologize BUT I am scared. Please keep writing. XOXO to all of you.

    • Valen Keefer

      Dear Connie,
      I think it is so wonderful that you attended your 1st walk this year after just recently being diagnosed. You are so strong by getting involved right away and learning as much as you can, which is wonderful. All you and the other volunteers are doing for the PKD Foundation will hopefully help to make a treatment and or cure for PKD a reality so future generations like your children and others will not have to endure what previous generations have from this disease. I hope that this blog and connecting with others will help give you knowledge and strength to empower you to keep fighting.

  6. Jody Balaun

    Valen….we had an amazing weekend getting to know you before the Denver PKD Walk. We knew from reading your uplifting blogs for the PKD Foundation you would be a great inspiration for the people who are struggling with the disease, their friends & their families. We achieved our team goal of raising awareness, raising money for research & providing encouragement to everyone who attended…and, we had allot of fun doing it! You being there provided such hope….hope that with a positive attitude like yours, we can not only survive but thrive with this yucky disease. We’re gonna keep fighting & keep smiling….we can’t wait to see you again. In the meantime..PKD Will Not Beat Me! And, PKD Will Not ‘Define’ Me either…hugs & love from Colorado! Jody, Sean, KeiKei, YaYa & Tucker too…

    • Valen Keefer

      Dearest Jody,
      What an amazing weekend we had! I am so glad that I volunteer for the PKD Foundation, because it has led me to amazing families like yours. You are so strong and such a fighter and I’m hoping that you are hanging in there with all of your recent surgeries. I can’t wait to see all of you again soon! xoxoxoxo


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