Voices of PKD: Trish Chesterman, Calgary AB
I am a young 67-year-old mom and grandmother to a son, daughter and four beautiful grandchildren. My preliminary diagnosis was around the age of 20, with confirmation when my kidney was removed at the age 40.
After years of pain and kidney infections leading up to my young adult years, my left kidney was removed; my kidney function on the right improved. The night before going home from the surgery, I was found unconscious, with a 5-part fracture to my shoulder. Doctors speculate that I had fallen during a possible seizure. I then went home to recover from my two recent surgeries.
One year later after an MRI, it was confirmed that I had a brain aneurysm. During my surgery, the doctors found two more aneurysms. Being a widow with two young children, I counted on my parents to care for us during my recovery.
Presently my right kidney is the size of a football pressing on the bottom of my stomach and top of the bowel. I also have cysts on my liver. Nearly two years ago, I was approved to go on the only treatment currently approved by Health Canada – JINARC. Without our incredible insurance, this would not have been possible as the drug is quite costly.
If there is a complication with PKD, I have had it. Very few people know the struggles we PKD patients endure – the constant pain, fatigue and general feeling of poor health, just to name a few. Thanks to my upbringing, I am one who sees the glass half full in life.
Originally, my family could not find the connection to this disease. My nephew and I were the only ones diagnosed. My Dad, who just turned 91, was diagnosed in his mid-80’s, when an ultrasound for something totally unrelated found that he too had PKD. This was his first ultrasound. Very recently, with the help and guidance of our nephrologist, Dr. W. Wang here in Calgary, Dad has made the decision that dialysis would not be for him. As his incredible medical team said, “Go smell the roses and enjoy every day”. That is exactly what he is doing. Dad and I have travelled this road of PKD together nearly all of my life, but now in a far more personal way. I attend all his appointments and with the help of my brother and sister, my parents are still in their own home.
My nephew, Darren, who is 36, was diagnosed with PKD at the age of 12. At the time, he was seen by Dr. Julian Midgley, Pediatric Nephrologist. He was doing research at the University of Calgary, related to the small number of pediatric ADPKD diagnoses in Southern Alberta. Under the care of Dr. Shore, he is now doing well.
Each day is a blessing for the three of us. I can only hope that there will be more treatment options and an eventual cure, so my grandchildren won’t have to go through what I have.
As you know, organ donation is so important to those in the PKD community. I encourage you to get everyone you know to register! We must do all that we can to reduce the current wait time for a kidney, which can take up to 7 years.
My final thought; I have no time to feel sorry for myself. There is too much to do!