,What lung condition led to your need for a lung transplant?
When I was four I was diagnosed with Idiopathic Pulmonary Hemosiderosis. The disease is extremely rare and I was not supposed to survive, but I did. Later in life, I developed COPD. At age 53, on June 26, 2018, I received a lung transplant.
When were you placed on the transplant list?
I sought help with my lung condition and eventually met Dr. Levy, a transplant doctor at St. Paul's Hospital. His exact words to me were, “You’re quite the rare individual.” He suggested I begin the qualification for a transplant but I wasn't ready yet. I told him I just wanted to meet the transplant team. He was convinced I would eventually need a transplant and told me to keep in touch. One year later I had a lung episode which forced me to stop working. Shortly after I met with Dr. Nador and the Transplant Program Nurse. I decided it was time to start my work-up and signed the transplant consent form in May 2017.
Did you know you'd spend about three months in Vancouver post-transplant?
Yes, and it was very overwhelming. Vancouver is extremely expensive. I told the doctors that I didn't have that kind of money. I could use my credit card to cover the costs, but it would leave me in serious debt. I would have to cover my own home expenses as well.
Once on 'the list' you can get ‘the call’ anytime. Without knowing when 'the call' would come, how did you plan?
Yes, the call could come at anytime and finding a place at the last minute is hard. Rent in Vancouver was skyrocketing. My sister and her husband Mike were my caregivers, so the day my 'call' came, Mike sprang into action and started looking. He looked for two days with no success. We couldn't afford the $4,000-$6,000 dollars a month. Mike decide to place his own ad online and got a hit almost immediately about a heritage house in Kitsilano. The man who responded asked us to take care of the place for three months. I was in the hospital during all this. It was a major stroke of luck. Mike and my sister Nadine were amazing!
Can you speak to some of the hardships you faced?
Being away from home is tough. I’m a small town kind of guy, so recovering in a city as big as Vancouver was hard. Being away from my family and pets was difficult, too. Things that broke down at home were a burden for my wife to take care of. It was hard to keep up with the bills over the phone. I do the banking in the family. I’m also the driver, so it was not easy for my wife to shop and get to work without me. It was hard, but we got through it.
How much did it cost you both to stay in Vancouver?
My three month post-transplant recovery in Vancouver cost around $17,500. I was lucky to have great friends and a town that rallied behind me. With their help, we raised $15,000. We put on a few Beer n’ Burger fundraisers and I also set up a GoFundMe account. I was fortunate enough to have had so many people come to my rescue.
What advice would you offer future lung transplant patients and caregivers?