Voices of PKD: Michael Coyle, Burnaby BC
“YOU need to see a doctor!” said the nurse, pointing a finger and using her most serious voice.
I was in an advanced first aid class with several Search and Rescue (SAR) volunteers. My partner and I were struggling to take blood pressure measurements “old school”: manually with the blood pressure cuff and a stethoscope. My partner kept getting a very high value when measuring my blood pressure - what was he doing wrong?
It turns out the reading was correct. High blood pressure is nothing to joke about. The reasons for a high reading are varied, and can include many serious health conditions - which is why I am still grateful when this particular nurse, also a member of the SAR team, came to the next week’s training and took my blood pressure again. Off the chart. She reiterated her advice to see a doctor immediately.
I did. Which is how I was diagnosed with polycystic kidney disease (PKD).
Finding out you have PKD this way is a little unusual, given that it is a genetic disease and most people inherit it from a parent. But I was adopted as an infant. A year prior to being diagnosed with PKD, I had tracked down my birth mother and was in the process of developing a relationship with her and my half siblings so the first thing I did was reach out to them about the disease. No trace of it in their family, which left my birth father.
He was hard to find. I only had a name and a city - and as it turned out the name was misspelled. The pieces all came together when I was visiting my birth mother at her home in Australia and we were going through some photos. Maybe the people she knew while she was pregnant had better information. They did. A few months later I found him - and learned that he had been the recipient of a kidney transplant - donated by his wife!
With the mystery of where my particular genes came from solved, the question became what to do about it. The general advice seemed to be to live healthy, stay away from alcohol and meat, and control your blood pressure. Nothing told me to quit Search and Rescue, so I continued. I was already a rock climber, a mountaineer and a backcountry skier, so I began training in earnest to be a mountain rescuer - eventually becoming part of the helicopter rescue team and participating in some very high profile SAR incidents here in British Columbia.
My nephrologist, sensitive to the sometimes dangerous nature of SAR work, arranged for an MRI every few years to rule out the possibility of an aneurysm which can be associated with PKD. Other than that and some blood pressure medication, I maintained a highly physical lifestyle. The highlight of my SAR career was being chosen to participate as a helicopter rescue technician for the downhill skiing venue during the Vancouver Whistler 2010 Olympics. I ended up rescuing American skier Stacey Cook when she had a serious fall during a training run.
As expected with PKD, my kidney function has slowly declined over the years. By 2011 it began to impact my performance as a SAR field member. I spent less time in the field, transitioning to managing searches instead. By 2017 the Kidney Clinic at Vancouver General Hospital referred me to the Transplant Clinic for assessment, and I “retired” from field active duty and the helicopter rescue team, although I continue to act as a SAR Manager.
I was approved as a transplant recipient in 2018.
I continue to be as active as I can within the Search and Rescue community. I am the media liaison for our team, so I appear on TV and in the newspaper to talk about the various SAR incidents in our region, and to promote backcountry safety. I’m very fortunate to have a successful career as an independent software developer so I work from home, and as my kidney function declines I can rest throughout the day.
Recently my kidney function declined to stage 4, and my caregivers at the Kidney Clinic stressed that if their recommended pre-emptive transplantation (a kidney transplant before dialysis is required) were to happen, I would have to start asking people - something I was reluctant to do. I’d talked about it to close friends and family, and a few of them were in the process of being tested, but none were a match.
It was a total surprise to me when, a week after my most recent visit to the kidney clinic, a stranger reached out to me via Facebook. She’d heard that I needed a kidney, and wanted to know if I’d accept her offer! That feeling of another person being so willing to give, so… heroic. I thought to myself, “Is this how people feel when they’re rescued?”
Having that first person come forward to help is what spurred me to go public with my condition, to write about it, and to start down the path of promoting organ donation. I want people to know that PKD is not a good thing, but you can live, and thrive, and help others with this disease. It has been a learning experience for me - someone who spent almost two decades rescuing people, to have to ask others for help.
To learn more about Michael's PKD journey, watch this video!
Michael gave us an update on his Voices of PKD story in February 2020. We're thrilled to share that he did get his kidney transplant! You can read that story here.