I have a chronic disease called Polycystic Kidney Disease, PKD. Cysts grow on my kidneys, and renal function stops in that area. I inherited this condition from my father, who inherited it from his mother, the popular explanation of the cause is too much cousin loving in the old country. Whatever. I was diagnosed in my early twenty’s, and of my 3 siblings I am the only one who was lucky enough to keep the family disease going for another generation. I have not fathered any children, but I did raise 3 step-sons.
I have monitored the progress of the disease, all the medical advice I got was ‘there is nothing you can do, just wait for the disease to affect you, then you can get treatment’ so I did nothing. I knew from family history that I would be affected in my mid fifties, so just past my fiftieth birthday I get a referral to a Nephrologist in Calgary, Alberta, where I currently reside.
Dr. Samuel Schorr took me on as a patient and gave me a battery of tests to determine the state of my health and the progress of the disease. I went for a blood test every month, Dr. Schorr saw me every three months.
I have been watching the progress of kidney research and considered myself fortunate there are so many different options available for my treatment. When my Grandmother was diagnosed there was no treatment, her doctors could do nothing to help her. She did live for 3 years after being diagnosed, but I don’t remember her, I was too young.
I do remember my Father and his battle with Polycystic Kidney Disease, he had a heart attack at the same time as his kidneys failed, he had many complications, and after the bypass surgery to repair his heart his doctors determined that he was not a viable candidate for a kidney transplant. His weakened condition also meant that he couldn’t handle the stress of haemodialysis, so his only option was peritoneal dialysis. He survived for five years on this treatment before succumbing to his disease.
I was a bit more pro-active than my Father, watching my health, staying in shape, knowing that I would be needing surgery sometime in the near future and preparing myself for that eventuality. I took up riding a bike, a skill I quickly remembered from my youth, and this is my main form of exercise. I also walk, Calgary has an extensive network of walking trails that I take advantage of whenever I can.
I am confident that I am getting the best treatment available and my future is not as grim as my Father or Grandmother. New research is coming up with better treatments, and there is a chance I will be able to cure this disease with a new kidney grown in a lab. That treatment is not available yet, but I am hoping that soon it will be an option.