Hope re-energizes us, gives us something to look forward to, something to cling onto, something to believe in. When living with a chronic issue, there can be days when we feel there is no end in sight, no light at the end of the tunnel. Reminds me of the day I stood at the crossroads of a dirt path in Kansas City. The flat land resembled the ocean, as it appeared to never end. This is one of the most vivid memories of our cross-country move from PA to CA. I stood in the middle of a four-way intersection. No cars or people in sight. Just me, my husband Noah, and our VW station wagon. My hair was blowing in the wind; I tilted my head towards the sky, closed my eyes and inhaled deeply. When I opened my eyes, I smiled and was reminded that no matter what direction we take in life, there is one element that we have control over: our positivity and hope.
People fascinate me. We all have unique characteristics and bodies that make us look completely different from one another. Yet, we still yearn to look and be like others. I am intrigued by the careers people have and what inspires them to dedicate their lives to that particular field. No matter if you are the CEO of a company or the janitor, every position matters and helps to make the world go ‘round. I am curious how people get into certain hobbies and how they spend their free time, for instance, riding a unicycle. This is the amazing part of life. We are all unique and beautiful in our own special way. We all have something to offer, to give, and for others to learn from. Each one of us is a very important component of the universe.
As time passed, the pain intensified in my lower back. I winced with pain at every imperfection in the road’s pavement. I was a teenager and my family and I were headed to Myrtle Beach, South Carolina, for a family vacation. It was a nine-hour drive from Pennsylvania to our rented condo in Myrtle Beach. I was sitting in the back seat, well aware of what was causing my pain. I was diagnosed with PKD at the age of 10 and quite familiar with cyst bleeds. I knew the long car ride was irritating my enlarged kidneys. I did not tell my parents how I felt, in hopes that it would subside once we arrived at the beach.
I didn’t have time to prepare and worry about my kidney transplant. Things happened quickly and my focus was surviving each individual day. My cysts would not stop bleeding and my football-sized kidneys had to be removed. I was too sick to be placed on the transplant waiting list. I was on daily dialysis and needed a kidney to survive. I don’t know if it was because I was 19 years old, but I did not fear the transplant or what life would be like post-transplant. I knew it needed to happen to extend my life and I was going to do what had to be done. It was that simple.
We just finished Kidney Month, and today marks the beginning of Donate Life Month. For people with PKD, transplantation is never far from our thoughts, so I’m focusing today’s blog on this topic.
When I was in need of a living kidney donor to lift me off death’s doorstep, there was no information or support provided to my family. No informational pamphlets, nobody to call, no organization to share their knowledge and support, not one person to tell us that we were not alone and that there was hope. This is why I share my story. This is why I am passionate about helping others. To let you know that you are not alone, that there is support and most importantly, hope. The PKD Foundation also provides support, like publishing this and other blog entries, to provide information and bridge people to other resources. In this entry I want to share one of these resources for people thinking about transplantation.
When living with a genetic disease, such as PKD, we have seen and felt the effects of it throughout multiple generations. Quite often I hear others share stories of numerous family members they have lost, who have battled PKD. No matter what we are fighting, most of us share a common sentiment: the will to survive. My health issues have given me a vantage point that life is precious, however when someone we love passes, my perspective takes on new dimensions with crystal clear vision.
PKD Will Not Beat Me is my motto, my mission and my passion. It’s how I stand up to our disease and show it who’s in control. It is how I lead my life and I try to encourage others to incorporate this theme into their lives. These five words are a constant reminder that I am strong and that this disease does not define me. Although I look healthy on the outside, I have more than 45 inches of scars that trace my PKD and health journey, as another remembrance that I fought the good fight and will continue to do so. I have and continue to stand up to PKD by equating those three letters to, Positivity, Knowledge and Determination.
“A new study published in the ‘American Journal of Kidney Diseases’ finds that more than 50% of middle-aged adults in the US are at risk of developing chronic kidney disease at some point in their lifetime.”
Let’s give a big ‘thank you’ to all kidneys! From the pristine to the cyst-riddled. The kidneys that are the size of our fist to the size of a football. All of the full-functioning beans down to the ones that are hanging on by a thread. To the kidneys we are born with to the ones so graciously donated to us. Today we celebrate you!
When diagnosed with polycystic kidney disease (PKD), facing and overcoming challenges are part of the disease. This month, the PKD Foundation is hosting a month-long challenge. One that if accepted, will help others and ourselves. Are you up for the 31 Days of PKD Challenges?
In honor and celebration of March’s National Kidney Month, the PKD Foundation has selected simple, daily challenges that can help raise awareness of PKD. I hope you will join me in participating in the fourth annual 31 Days of PKD Challenges! Please follow along on Facebook, Twitter and Instagram for daily updates on our progress. Share your progress too, using #PKDChallenge, #kidneymonth and #endPKD.
I was standing with my back toward the wall at Starbucks in the Sacramento International Airport, waiting for my tall, iced, green tea unsweetened with two Splenda Sweeteners. I was wearing a mask to protect myself from germs, and a sweatshirt I had created when I rode on the Donate Life Float in 2011. It has a picture of my organ donor on the front and the words, ‘I love my living donor,’ ‘END PKD’ down one sleeve, ‘Donate Life’ down the other sleeve and the 2011 Donate Life logo on the back with the words, ‘Transplantation Works, Kidney Recipient.’ I noticed the woman to my right was looking at me. Wearing a mask attracts attention so I didn’t think anything of it. She asked, “Did you receive a kidney transplant?” I said, “Yes, I did. Thank you for asking.” We chatted for a few minutes and discovered that a friend of hers has PKD and received a transplant, too.