For many of us, we have to deal with PKD personally and also handle the emotions our loved ones endure because of the disease. My mom, at 59 years old, is the oldest to survive in our immediate family from PKD. All other family members on mom’s side of the family passed away prior to this age. I never met my grandmother. I only knew my aunt for a short amount of time. I missed out on many relationships with family members who died far too young due to PKD.
There is one question I have been asked more than any other. “How do you stay so positive?” When thinking of all that I have to endure, there are times I wonder the same thing. We each have different dispositions that make us the special individuals we are. These characteristics may be inherited, picked up by our surroundings or a response to what we experience in our lives.
Through our voyages with PKD, we endure many emotional phases. There’s dealing with the diagnosis of the disease, chronic pain, the unwanted side effects, dialysis, surgeries and stress, just to name a few. We did not ask for PKD nor would we wish it on anyone. However, we have a choice of how we will cope with this disease, and I choose positivity.
As a child, the days seem so long. That feeling changes quickly as we grow older and the word “bored” vanishes from our vocabulary. I have entered the age range where time feels fleeting and the years are flying by. It is hard to fathom that today marks my 13-year kidney transplant anniversary. At 19 years old, I was too young to fully grasp and appreciate how a kidney transplant would change my life. I knew my life was being saved, but I never imagined how much it would transform. These extra years that I have been gifted – with thanks to my living donor, Sally Robertson – have granted me the time to live, love and learn invaluable life lessons. In honor of this monumental day, I wrote the first 13 lessons that came to mind, in no particular order, which I have learned since receiving the gift of life:
“What’s the special occasion?” I’m sure you have heard this question when someone sees you dressed up, if you mention an upcoming trip, bake a cake, or purchase something out of the ordinary. I think it is more fun to do something special spur of the moment rather than on an expected occasion. I love random cards, unexpected gifts, spontaneous adventures and little surprises. An exciting part of life is the unknown and what a new day will bring.
My evening at the JINARC® (tolvaptan) Extravaganza Gala
If someone would have told me when I was 19 and on death’s doorstep because of PKD, that in 13 years I would share my triumph over adversity by attending the launch of the first treatment for PKD in Canada – my family and I would have been in utter disbelief.
As a patient, one must possess a multitude of skills. We become our own administrative assistant by scheduling our medical appointments and the phone calls, paperwork and documentation involved in coordinating our care. We fill the role of a medical biller as we decipher, pay and file our bills, and keep up-to-date on all of the details with our health insurance. Our daily regimen of medicine looks like a miniature pharmacy and we become our own pharmacy technician as we coordinate and order our medicine. Going to doctor appointments, getting blood work performed and taking the best care of ourselves consumes a lot of time. This is just a sliver of what patients must handle. No matter how consuming our health challenges may be, though, we are way more than just patients.
Being an athlete involves training, some natural-born talent, strength, stamina and an immense amount of determination, dedication and drive. Noah and I watched athleticism at its finest on the morning of June 28. We stood by the finish line of The Western States 100-Mile Endurance Run and watched in awe as runners crossed the finish line. This race is the world’s oldest and most prestigious 100-mile trail race, beginning in Squaw Valley, California and ending 100.2 miles later in Auburn, California. Since it began in 1974, it has evolved into one of the ultimate endurance tests in the world, as runners from all over the globe climb more than 18,000 feet and descend nearly 23,000 feet before reaching the finish line.
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.