On PKD Awareness Day, Sept. 4, 2015, my family and I used window markers and excitedly decorated our car in a parking lot in Arizona. Our messages ranged from “PKD Awareness Day, PKD Patient Inside” to “PKD Will Not Beat Me.” As we adorned our car for the occasion, someone passing by asked us what PKD stands for. We were all happy to be asked this question and quickly responded that it stands for polycystic kidney disease and proceeded to tell her what we were doing, and why.
For some, it may be hard to share what PKD is since it is such a personal topic. Where do we start? How do we explain it? However, we never know what sharing our story will lead to. It has led to amazing opportunities in my life and really fun moments, like our recent TV interview in Las Vegas.
On PKD Awareness Day, our traveling adventures took the four of us from Sedona, Arizona to Las Vegas, Nevada. During these 300 miles we came across a TV news van after pulling into a parking lot to take pictures of Lake Mead. I thought it was serendipitous and felt compelled to introduce myself to the news reporter. I started the conversation with, “Are you looking for an inspiring story?” I then kept it simple and told her what PKD is, how it has affected my life and why I am passionate about raising awareness. Next thing I knew, we were being interviewed on the spot and it aired on the 11 o’clock news on PKD Awareness Day in Las Vegas, Nevada.
As a PKD patient, I believe it is up to us to be PKD messengers. To share with others what we live with daily, how it has affected our lives and our hope for a treatment and cure. I am always open to sharing and educating. I see this as my calling and duty. I strive to be a messenger of PKD awareness and hope. For me, every day is PKD Awareness Day.
I invite you to share a time when you educated someone on what PKD is.
i’ve been aa survivor and a dialysis Parian
I’ve survived 6.0 and 23 lymph nodes positive breast cancer
Chemo and radiation
Two hip replacements
Partial hysterectomy
Gallbladder removed
Valve replacement on mitral
Kidney transplant received (2)
And on dialysis again after the trabsplNt was 10 years old
But I still am optimistic
I hope for a kidney and liver transplant
Both were only 15% function
I am a survivor
My sister has passed my brother also my mother when I was just 18 years old
I have a beautiful son and 3 step sons
5grandsons and 1granddaughter
I love each and everyone of them
Old doesn’t have me….
I will survive
Wow, thank you for sharing all that you have overcome. You are the epitome of a survivor! Hoping for a kidney and liver transplant for you real soon. In the meantime, keep that admirable positive spirit of yours and enjoy ever second with your beautiful family. Wishing you all the best!
Hey Valen,
You and your family together brought a smile to my face. I wish I had been nearby that day so I could cheer you on! I’m on dialysis now after 10 possible donors were denied. As you can imagine, I have had a boat load of adventures! Some I will choose to forget , and some I will remember as incredible. Throughout the last two years since my evaluation process began, I have encountered opportunities to share my family story of PKD. Every person has listened attentively to what I have said. I don’t know that it made a difference to share my knowledge. However, communicating is a natural thing for me, so if my sharing information with others will somehow spread understanding, then maybe someone who never had the thought of donating their precious kidney will do so. Here’s to your continued efforts on behalf of all of us Valen! You make my journey easier because of your strength and triumphs!
Hi Karen,
You are so sweet, thank you! You were definitely there in spirit. 🙂
Wow, 10 possible donors. Here’s hoping for lucky #11!
Of course it made a difference! Every time you share your story, you are educating and like you said, hopefully encourage someone to donate their precious kidney.
Your last sentence gave me the motivation to start writing this week’s post. Thank you for that. Your kind words of support mean a lot! Hugs!
I have a question not sure anyone has answer . I’m almost 10 months post transplant kidney living donor. Headed to have surgery next week to have both kidneys removed . Both have gotten very big since transplant. Are there any statistics on how many of us with pkd have this done? I read somewhere 20 percent but in my research seems higher than that. Just interested. Thanks blessings to all
Hi Jan,
Congratulations on your transplant. I do not know the exact statistic, but wanted to let you know that both of my kidneys were removed prior to my transplant. This was because my cysts would not stop bleeding. Wishing you all the best with your upcoming surgery.
I don’t know but I do wish you all the best!!!!
Rick “mountainbikeagainstPKD” Nelson