Nobody likes a setback. I’ve learned that downtime gives us more time to think, which sometimes can be to our benefit and other times not. I find it interesting the thoughts that sporadically cross our minds. I had the thought the other day that I may never be able to run again. Not that this is a big deal for me, but the thought did cross my mind. When I see big open fields or mountains, I envision myself skipping around freely or wanting to climb to the summit. Those days may be gone. However, there are plenty of other things I can do and it is important for us to focus on those aspects in life.
Nothing is coincidence. I believe we cross paths with people at just the right time in life and for the right reasons. A silver lining of having PKD are the amazing friendships that blossom from battling this disease. Sharing my journey has been the key that has allowed me to discover individuals I never knew existed, who have become my ‘PKD family.’
I was not gifted with great health or an easy journey in life. However, when I was placed in the arms of my mother for the first time, I was immediately gifted with unconditional love. My mom, Pamela, was 26-years-old when I entered this world. Her first-born, my brother, was six-years-old and mom had just lost her mother from PKD six months prior. When I think of my mom, I think of strength, compassion, tenacity and love. All traits she instilled in me.
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.