What lung condition led to your need for a lung transplant?
I was diagnosed with COPD in 2013. My breathing had actually started to deteriorate about a year or so before my diagnosis.
When were you placed on the transplant list?
It all happened very quickly. I was originally placed on 'the list' in February 2016. But because the doctors found some nodules on my lungs, which they thought might be cancerous, things got delayed. After some testing it turned out the nodules were non-cancerous. What a relief! I was placed back on 'the list' in June 2016 and had my transplant July 11, 2016. I was very fortunate.
Did you know you'd spend about three months in Vancouver post-transplant?
Yes, the social worker was very thorough with providing this information.
Once on 'the list' you can get ‘the call’ anytime. Without knowing when the call would come, how did you plan?
Coming from outside of Vancouver, once you receive 'the call', your caregiver is then on a mad hunt for a place to stay. We were able to make previous arrangements in Whitehorse for friends to look after our house, plants and pets.
Can you speak to some of the hardships you faced?
The stress was mostly finance-related. Leaving everything behind while other people took care of our home felt like a lot to ask as well. We didn't have any transportation while in Vancouver, so finding grocery stores and other necessities nearby had its challenges. To help, we bought a shopping tote to carry groceries and Valerie purchased a used bicycle, so she could get around and explore the neighbourhood.
Valerie, as caregiver, can you tell us what the experience was like for you?
As a caregiver, you have to be generous with your time, tolerant, and patient despite the fatigue that comes from the change in routine and the change in your surroundings. The medical part of Marc’s life was out of my hands, so my focus was being a useful supporter and organizing our life outside the hospital. During Marc’s stay at VGH, pre and post-op, I stayed at The Park Inn in Vancouver and then rented a room until we moved to our final stay. We found an apartment block called Oakway Manor right across the street the VGH and stayed there for three months. The social worker from the Transplant Team provided very useful information in regard to lodging, funds, etc. The hospital staff were all incredibly helpful.
How much did it cost you both to stay in Vancouver?
Rent alone was $10,000. Food and other miscellaneous costs came close to $5,000 so we spent close to $15,000 for the ten weeks post-transplant while in Vancouver. We didn’t have a vehicle, so there were no added expenses for parking, gas, or travelling. The Yukon Government provided some funding but not until Marc was out of the hospital and attending rehab. We were very grateful.
What advice would you offer lung transplant patients and caregivers awaiting 'the call'?