When your nephrologist calls you two hours after you get your monthly blood work drawn, you know something is wrong. This happened to me last week. When I answered the phone and heard my nephrologist’s voice, I instantly asked, “What is wrong?” Dr. Bhat said, “Hi, Valen. How are you feeling today?” Every thought vanished except the question I then asked, “Is my kidney OK?” Dr. Bhat said, “Yes, your kidney is great, but I need to know how you feel.” I felt my posture lighten, knowing my kidney was fine. My mind then began racing through the past couple of days to recall how I felt.
It has been nearly 13 years since I was given the precious gift of life. When I received my kidney transplant I was not only given a second chance, but the responsibility to care for the special gem I carry inside me. I look at this responsibility as an honor. I’ve learned that the more educated and aware of our bodies we are, the better outcome we will have. I recently came across a very interesting tool that I believe will be extremely valuable for those of us with PKD.
When I think back to my PKD cyst bleed episodes in middle school and high school, I realize I did not talk to many people about what was happening to me. My parents, doctors and school nurse were the ones aware of my condition. If I were to talk on a personal level of what I was enduring, it would be with my parents. I don’t recall talking much to my closest friends about what I was going through. It seemed to be a separate part of my life. I did not know any other person battling PKD, except my family members.
Sometimes what may seem like a simple gesture or action can prove to mean a whole lot to someone else. I had a ‘fall in love all over again moment’ with Noah last weekend. We attended a PKD support group meeting in Sacramento. I was standing with a few other people. We all had our names written on name tags. Noah approached our group and I immediately saw his name tag: “Noah Keefer, Wife w/ PKD/Transplant.” It warmed my heart to be visually reminded of his immense level of support of what I have endured and my desire to be actively involved in the PKD community and to help others. His name tag was letting everyone know his personal connection with the disease and his willingness to talk about it. Noah is an amazing advocate for the cause. Very knowledgeable of my health, enjoys helping to raise awareness and willing to talk to anyone about what I have gone through and what we endure as a couple. The other evening before we fell asleep, Noah said, “It is a privilege to take care of you.” I know I am the privileged one to have him by my side on this journey.
In preschool, we are given snacks and nap-time to refuel. In grade school, we have recess to burn off energy and help us focus. In high school, we are given breaks between class periods to talk, walk and clear our minds before the next class begins. With college comes semester breaks to rest and prepare for the next set of classes. In the corporate world, we earn vacation days and are allotted breaks throughout the day to clear our minds. There is a pattern in life that displays the vital need to take time for ourselves and let our body and mind rest and rejuvenate.
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.