Knowledge, the “K” in my PKD! Rather than fear, try and understand! This is what I live by. When first learning of PKD, or after living with it for almost 20 years, like myself, it can seem scary. I have learned that the more knowledge I have gained, the more empowered I feel, and the less fear I have.
Since 2004 , when I first learned of and started volunteering with the PKD Foundation, I have gained tremendous knowledge of PKD. I lived with PKD for 12 years before knowing that the PKD Foundation existed. I hope that no one else will have to go that long without this wonderful resource. From the website, to conventions, to events, I learned so much not only about the disease but also about myself.
Dave Kappas and me
The friendships and knowledge I have gained from other PKD survivors are priceless. It is comforting to know that we are not alone and not the only ones enduring lower back pain, high blood pressure, cyst bleeds and so on.
This knowledge has had a ripple effect in my life. The knowledge I have gained has made me feel more in control of my health and my own best advocate. It has empowered me to use my voice to share what I have learned with others and help to raise awareness of PKD, to END PKD.
I hope the knowledge and support you gain through the Foundation and by connecting with others will provide comfort to you on your journey.
How has knowledge helped you?
Knowledge is key. I’ve had PKD symptoms since I was 19. I was diagnosed at 42 and suffered kidney failure at 53. If it wasn’t for the skill and knowledge of my physicians and nurses I would not be here. They have taken the time to explain to me what’s happening every step of the way. Still, dialysis is not easy. Being on the UNOS list is not easy. So, Valen, while I applaud your stance that PKD will not beat you, don’t underestimate your enemy. I was stable for years after diagnosis; I ate right, exercised hard. But then things started to go downhill fast. I was shocked. I truly believed that I could beat the odds. I couldn’t. My advice to all PKD patients is to do everything you can to fight the disease but be prepared for the cysts to kill your organs. Because that’s what this disease does.
Hi David,
Thank you for sharing your story and advice. I definitely do not underestimate what PKD can do to our bodies, as I have been fighting this since I was 10 years old. I was in and out of the hospital through middle school and high school. Missed the first half of my senior year due to cyst bleeds. I spent 11 months in the hospital when I was 18 and 19 where both kidneys were removed, I was on dialysis, battled through many other complications and surgeries and was fortunate to receive a kidney transplant at 19. My body has endured almost every aspect of this disease and I continue to be amazed by what our bodies can endure and overcome. After living through all of this, I am determined to stay mentally strong and positive in knowing that PKD will not beat me. I am a realist and know the devastation that this disease can cause, but I am also an optimist and plan to dedicate my life to sharing my experiences with others with the goal to provide hope and encourage others to do all they can to battle through each stage of this disease.
I am thankful to hear that you have had wondeful physicians and nurses to help you every step of the way. That is so vital.
I share your thougths that dialysis is not easy and sure hope you are able to receive a transplant soon. Thank you for connecting on here and take good care.
Had to share with those that will understand- especially parents. First, I found out after my two boys were born that I had PKD and neither have been tested yet at 35 and 25 because they have no symptoms so why introduce Ins. questions. I worry about their futures every day but grateful to have them both in my life. Anyway My older boy had to have an emergency appendectomy last night which was scary but all good now, and a wonderful bi-product was Normal Kidneys on the CT Scan. That means at least for 50% of my immediate family- This disease ends. Its like winning the lottery. I only hope I can win it one more time with my other boy.I also hope many of you get to experience the relief I felt yesterday. God Bless you all on your journeys….
Hi Mary,
Thank you for this very uplifting message and for sharing such personal family news. It is great that your sons are 35 and 25 with no symptoms. That is wonderful and it is even more wonderful that you just found out that one of them does not have PKD. I wish this great news for all of the other families out there and thank you for sharing such exciting news with all of us. Here’s hoping you will receive the same great news some day with your other son. Celebrating with you! xo