The Exceptions

When I was first diagnosed with PKD at ten years old, my nephrologist told my mom and me, “You will probably follow your same family history and not be affected until your late 40s to early 50s,” but my mom and I are the exception to this statement.

mom and valen at 15 years oldLooking back at our family history, my mom and I are on opposite ends of the spectrum regarding how PKD has affected us individually. I am the youngest member of our immediate family to experience such severe side effects from PKD, and I am also the first to receive a kidney transplant. Whereas, my mom was diagnosed in her early 20s and is the longest-living member of our family to not endure any severe side effects from the disease. She has cysts on both her kidneys and liver, and her high blood pressure is controlled with medicine. She experiences minimal pain, her creatinine is stable, she’s never had a cyst bleed, and never had to endure dialysis or need a kidney transplant.

Our health journeys are like night and day and don’t mirror any of our other family members’. From both personal experience and the stories of other PKD patients whom I have met, this disease seems to affect everyone differently– both physically and mentally.

pkd will not beat us (1)

Today is my mother’s 60th birthday! She has outlived everyone in our immediate family with PKD. Mom has not only outlived them age-wise (because the oldest to live was her mom who passed from PKD at 53), but she is healthier than any of them were, too. This is monumental. It is a day to be celebrated with overwhelming gratitude and joy. No words can justify what this day and every day with my mom being healthy means to me.

momAlthough my mom is breaking records, health and age-wise in our family, she has seen, felt and mentally endured so much in her 60 years of living with this “family” disease. There are many family members my mom never met because of PKD. She watched her mom fight long and hard with PKD and then die when my mother was in her early 20s. She saw her sister pass from PKD because she made the decision to not do dialysis. She also saw her stepbrother pass from PKD while he was on dialysis. On top of all of this loss, both of her children – my brother and myself – have PKD. I honestly think that all she has endured–with raising me and witnessing and supporting all that I have battled because of PKD–was harder than me going through it.

mom and valenMy mom is a remarkable woman. I am so thankful to have her alive and healthy. I am grateful for her strength in helping me pull through all that I have endured because of this disease. She is an incredible mother and friend with whom I share an irreplaceable bond, and can get the giggles with like no one else. She has seen so much and has been deeply affected by PKD. I feel blessed that my mom and I are the exceptions in our family. My wish is that she will continue to keep breaking family records, both in age and health.

Mom and dad are visiting Noah and I in California this weekend and I can’t wait to hug them and celebrate this special day. When living with PKD, you learn that every day deserves to be celebrated.

Happy 60th birthday, Mom! I love you bunches and bunches!

Please join me in wishing my beautiful mom a healthy and happy 60th birthday!!!

How does PKD affect your family?

48 Comments

  1. Maureen Gardner

    Thanks Valen! Happy Birthday to your amazing Mom! Happy Mother s Day too!

    Reply
    • Valen Keefer

      Thanks Maureen! I appreciate the kind wishes to my mom! 🙂 Hope you’re doing great! xo

      Reply
  2. bambi

    Thank you Valen, you are an inspiration to so many affected with PKD. Your Momm is an example that your journey will not be like everyone elses. I am so happy for Your Mom and you and your story is the story of HOPE.
    My daughter is the one affected with PKD. Her’s was a mutation & not genetic. Dx 3 months after getting married. Life is such…we will get through this

    Reply
    • Valen Keefer

      Hi Bambi,
      Thank you so very much for your sweet sentiments. They mean a whole bunch!
      I hope your daughters health is well and that her health follows the same path of my mom and she will still be stable at 60! 🙂 and yes, WE WILL get through this! Keep that positive spirit. Hugs!

      Reply
  3. dominique

    wow she is one strong woman and im sure thats where you get it from. Many would of cracked under all she had to endure , I am so glad you have each other and hold each other up when you need to be and just to be able to be there and enjoy everything in life .. she should get mother of the year in my eyes..amazing she is both of you i would be so proud and grateful too. may you have a great moms day weekend and have many more days together when you can . love to you all ! dominique

    Reply
    • Valen Keefer

      You are just the sweetest Dominique! Thank you for this heartfelt message! Mom and dad headed back to PA last weekend. The goodbyes never get any easier, but I am oh-so grateful for the time we had together. I hope your health is well and you are feeling great. Big hugs!!!

      Reply
  4. Cathy Perkins

    Valen,
    As always, I love your amazing stories. Please wish your Mom the Happiest of Birthdays.
    I just hit that magic number a few months ago. How lucky are we to have PKD and still not have reached the “bad” part yet.
    How lucky you are to have your Mom. I lost mine at 61 years of age to PKD. You are truly blessed to share your journey with an amazing Mother.
    Have a wonderful visit with your family!

    Reply
    • Valen Keefer

      Hi Cathy!
      Thank you for the kind birthday wishes to my mom! 🙂
      You and mom sure are lucky to hit 60 and still in stable health. Just amazing!
      I’m so sorry that you lost your mom at 61. Your mom would be so proud of how you are fighting PKD, helping others and your zest for life. Our visit together was wonderful, but always too short. I’m grateful to be so rich in love. I hope to see you soon! xoxo

      Reply
  5. Melissa McCutcheon

    Thanks for sharing your stories! I keep meaning to share with you how you gave me strength , but whenever I try to write it I get too emotional 🙂 So for now I just say Thank You! A very Happy Birthday to your Mom!!!

    Reply
    • Valen Keefer

      It is my honor and you’re so welcome! Thank you for sharing this, it really touched me and fuels my passion to keep sharing. Thanks for the birthday wishes to mom! Big hugs!

      Reply
  6. Jan

    Happy Birthday to a lovely lady I hope you all have a wonderful weekend together. My Mom and I are very much the same, my is Mom 92 years old has had NO problems from PKD, yet I got it full force also at a very young age. We also believe my Grandma and Great Grandma had it and passed away at ages 98 and 85!! It is such an individual disease. We all must just keep being Warriors, no matter how we have been affected

    Reply
    • Valen Keefer

      Beautifully said Jan! Just extraordinary how long some of your relatives have lived with PKD. You and I are kindred spirits with having such severe complications and at younger ages than the rest of our family. Thank you for the birthday wishes to mom! We had a wonderful time together…too short and miss them already. Love you and miss you! xo

      Reply
  7. Chris

    Thank you for sharing your families experience with PKD. I have always been told that I will follow the same pattern of this disease as my family. But that has not true and it’s nice to hear that it can really vary. Do you what the secret is to your mom having such a different course than everyone else? Has she done anything different with her diet or exercise or meds? Or something else?
    Happy Birthday to your mom!!

    Reply
    • Valen Keefer

      Hi Chris,
      I wish there was a secret to share, but I don’t think I have one. My mom eats healthy, stays slim and has been on blood pressure meds since her diagnosis in her 20’s. She is regularly monitored by her nephrologist. Basically does everything we all should do. Thank you for the birthday wishes to mom. I hope you will be the same as her and break records, both in age and health. 🙂

      Reply
  8. Jennifer

    Happy Birthday to your mom!
    I’ve also always been told that I would follow the course of my mother. Interesting to know that it’s not necessarily true.
    Thanks for sharing!

    Reply
    • Valen Keefer

      Hi Jennifer,
      You’re welcome and thank you for the kind birthday wishes to my mom! 🙂

      Reply
  9. Susan calhoun

    Happy birthday to a remarkable women !

    Reply
    • Valen Keefer

      Thank you so much for the sweet birthday wishes to my mom! 🙂

      Reply
  10. sandee walling

    Happy birthday. It is no wonder that Valen is so remarkable. You are a remarkable woman and mother.
    I send all my love to you all
    Sandee

    Reply
    • Valen Keefer

      Thank you so very much Sandee for this super sweet birthday message to mom! I sure hope the two of you can meet some day. How great would that be?! 🙂 You are a remarkable woman and mother, too! 🙂 xoxo Love you!

      Reply
  11. Helene Scherer

    Happy Mothers Day to your wonderful mom! I got PKD from my dad’s side, so I’m the only woman to be affected… So far. I was able to postpone treatment & ultimately transplant longer than any of my male relatives – it’s been 8 yrs since my successful transplant & I’m doing great. Fingers crossed that my daughter, who already has some kidney cysts can avoid serious impact even longer … And maybe even be as lucky as Valen’s mom.

    Reply
    • Valen Keefer

      Hi Helene,
      I hope you had a beautiful Mother’s Day and thank you for the wishes to my mom. Congratulations on 8 years post-transplant, that’s fantastic! I wish the same for your daughter and hope she will be celebrating her 60th birthday in the same stable health as my mom. 🙂 Wishing you two all the best!

      Reply
  12. Christine Richer

    Happy Birthday to your mom and Happy Mothers’ Day, too! It’s no wonder she’s such an inspiration to you! Both my brother and I have PKD and suspect that our dad did, too. He’s been through much more than me with complications like two heart valve replacements, a ruptured spleen, and a mini stroke, but he survived it all with 3 years of dialysis followed by a transplant. He’s doing very well now! Now It’s my turn to face dialysis and hopefully get on the transplant list. We have supported each other through all this, plus I have a very supportive husband. I feel lucky!

    Reply
    • Valen Keefer

      Hi Christine,
      Thank you for the wishes to my mom! 🙂
      I am so happy to hear that you are surrounded by such wonderful support. That makes a huge difference and I feel the same as you, lucky. I hope that your wait time for a transplant is short and even better yet, that you have a living kidney donor! Wishing you and your family good health and all the best!

      Reply
  13. Jessica

    So good to read this! It gives people hope and I’m so happy you were able to get a transplant. This is a scary disease where you just never know and I’m one to have anxiety every time I feel any little pain or when I have to visit my nephrologist.

    Reply
    • Valen Keefer

      Hi Jessica,
      I am so happy to hear that this gave you hope, as it is totally understandable to be anxious when dealing with the effects of PKD! I hope your health is well and wish you the best on your journey!

      Reply
  14. Karen

    Thank you for an inspirational story. This story brings tears for me too. My mother had PKD, as did her four siblings and her mother (my grandmother). I have several cousins who have it and I do as well. I never knew my grandmother because she died from PKD when my mom was in high school. My mom and all of her siblings have passed too. They all had somewhat different experiences with PKD and died from different things. It has been my
    secret fear that I will follow the same path my mom did since I am her child. Your story helps me see other possibilities. I have had very few problems so far even though I was diagnosed with this disease when I was in elementary school. Your message reminds me to look for positives and enjoy every moment. Happy Birthday and Happy Mother’s Day to your mom!

    Reply
    • Valen Keefer

      Oh Karen, your sentiments gave me goosebumps and warmed my heart all at the same time. My have you experienced loss in your family, too. It is crazy how this disease impacts so many just in one family. It makes me so very happy to know that my story helped you to see other possibilities and I am wishing with all my might that you will follow the path of my mother and break family records, both in age and health. Thank you for the sweet wishes to my mom and for sharing your story, it really touched me and meant a lot. Sending love and big hugs your way!

      Reply
  15. Betty

    Val you are an inspiration to a lot of people. Happy birthday and Happy Mother day to her

    Reply
    • Valen Keefer

      Thank you so much Betty for your kind sentiments and sweet wishes to mom! 🙂

      Reply
  16. Curtis Martin

    I’m so glad things are going well for your mom. I appreciate the reminder to treasure every day. I heard the same story about following the same path as other family members. My grandma’s kidneys failed at 85. She didn’t want dialysis and passed fairly quickly. Dad started dialysis at 83, but died from complications in about six months. I started BP mess at 35, and am still going ok at 59.5. I just have a big PKD belly.
    My challenge is having celiac disease on top of PKD. I hit the genetic lottery, getting something genetic from both sides of the family tree.
    I have been hoping I have another 20 years or so. Keeping my fingers crossed.

    Reply
    • Valen Keefer

      Hi Curtis,
      Thank you for your kind sentiments and for sharing your story. Well in your case, I sure hope you follow your family history, because it is great that your family members lived into their 80’s! I hope your enlarged kidneys aren’t causing you too many problems.
      I’m sorry to hear that you are battling celiac on top of PKD. I can sympathize as I have scoliosis and epilepsy on top of my PKD.
      Here’s wishing 20 plus years of good health, like the rest of your family 🙂

      Reply
  17. Peggy

    Beautiful story. PKD was a spontaneous mutation for me. No other family members had PKD. I am 77 and for the most part I am doing well. Pregnant belly and a huge hernia are my biggest complaints. I feel blessed every day to still be here. Enjoys your mom’s visit

    Reply
    • Valen Keefer

      Hi Peggy,
      Thank you for sharing your personal journey. So wonderful to hear that you are 77 and doing well. Keep that positive spirit and thank you for sharing with all of us. It was wonderful to have mom and dad here. 🙂 Take care and wishing you all the best!

      Reply
  18. Vickie Brown

    This is so encouraging for those of us with fsmily members fighting this incidious disease…everyone is different and knowing my daughter and maybe her girls might not have to go through dialysis and other problems..is great news..thank you!..

    Reply
    • Valen Keefer

      Hi Vickie,
      You’re so welcome! I’m very happy that this was encouraging to you! 🙂 Wishing you and your family all the best!

      Reply
  19. Michelle Watson

    my dad and his sisters all had different experience with pad as well, both of my cousins who had it passed away in their 50s , but my aunt dies at almost 70 , my father passed away at 47 but missed two transplant opportunities because they were too far away , i have 5 siblings, so far 3 of the 6 of us have been diagnosed, not all have been tested. One had high blood pressure, one has kidney stones , and i have neither. I have heard that the statistics are what you do not look at because it is a family disease you will be like other family members, but one of my dads sisters has it and has never had any progression with it, she lives in the country is a poet has a low stress life style is very healthy and in her late 70s early 80s now….so you never know, but it does give me hope that i could have an easier path than some of them did and ill do anything i can to achieve that.

    Reply
    • Valen Keefer

      Hi Michelle,
      Thank you very much for sharing your family history. Amazing to hear how we can all be affected so differently. Your positive spirit and determination to do all you can to be healthy and have an easier path with PKD is great. Keep taking good care of yourself and focusing on not only your physical health, but that positive mental strength too. Wishing you all the best!

      Reply
  20. Jiang Lu

    Happy Birthday to your mom!
    the wish is from Beijing China and I hope you know your story always inspring me so much.
    hope everyone at every corner of world can get together to beat the PKD!

    Reply
    • Valen Keefer

      Hi Jiang Lu,
      Knowing that mom was receiving birthday wishes from Beijing China made our whole family smile. Thank you for your wonderful wishes to my mom. You brightened our day! Your sweet sentiments mean a lot! Thank you so much! 🙂

      Reply
  21. Annie

    Happy Birthday to your amazing Mother! You both have such beautiful smiles. I was a kidney donor for my Daddy in 1998 because he had PKD. He was 70 years old when we did the transplant. Successful too! May God bless you both and your families. Keep praying for a cure.

    Reply
    • Valen Keefer

      Hi Annie,
      Thank you for the birthday wishes to mom and for your sweet compliment on our smiles! 🙂
      Wow, so awesome that you gave your dad a kidney! You’re amazing! Inspiring to know that he was 70 when he received a transplant and it was successful! Wishing you and your family all the best!

      Reply
  22. Karin

    Happy Birthday, Valen’s Mom!

    Dear Valen,
    Thank you for your post! Enjoy the weekend with your parents and pamper your mom who deserves it so much:)
    XOXOX

    Reply
    • Valen Keefer

      Hi Karin!
      Thank you for the birthday wishes to mom! 🙂
      We spoiled mom for her 60th and Mother’s Day and had a wonderful time! Miss them already. I hope you had a beautiful Mother’s Day! xoxo

      Reply
  23. Lana Stuhr

    Happiest of birthdays to your mom and happy mother’s day to her! Enjoy this fabulous weekend together, you are truly lucky to have each other!

    Reply
    • Valen Keefer

      Thank you very much sweet Lana! I hope you had a delightful Mother’s Day!

      Reply
  24. Johanna Lawrence

    Thank you for sharing – this has given me hope today.

    Reply
    • Valen Keefer

      Thank you for sharing this Johanna, then that means mission accomplished, knowing that I gave hope to one person! 🙂 Hugs!

      Reply

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