As my mom and I stood separately on each side of the Airport Vortex in Sedona, Arizona, the view was powerful yet calming. A vortex is a site where spiritual energy is concentrated – a globally recognized power spot. It is usually on or near an interesting rock formation, where people have reported feeling inspired by a beneficial source of energy. There are only a few of these locations, including Stonehenge, the Great Pyramid, Machu Picchu and Sedona. There are multiple vortexes in Sedona and each one has a stunning view. We were surrounded with vibrant red rocks, love and fresh air. I could not have asked for more.
For some of us, PKD is not our only health issue. In addition to living with PKD and being a kidney transplant recipient, I have epilepsy and serious back issues. I did not have any health hiccups last month, but even during a quiet month I have routine health responsibilities. This is what September was like for me:
- I had two check-ups at my family doctor’s office.
- I went to therapeutic Pilates twice a week.
- I heated and stretched my legs and heated and iced my back daily for my back problems.
I’m a go-getter. I like to soak in and accomplish as much as I can each day. My body does not always allow me to do what my mind wants or thinks it can do. When living with chronic health issues like PKD, fatigue can become a part of our lives. When both of my kidneys were removed, I was on daily dialysis and hospitalized for many months; brushing my teeth was a huge accomplishment for the day.
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.
I fondly remember being in my early 20s and sitting on my living room floor calling one person after another from a contact list the PKD Foundation gave me. I was calling PKD families in south central Pennsylvania, introducing myself and letting them know I was starting a local PKD Foundation Chapter and Walk for PKD.
The Walk for PKD is the Foundation’s largest annual fundraising and awareness event. I had the privilege of organizing three fundraising Walks in Pennsylvania and I am proud of what our Chapter accomplished.
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.