What lung condition led to your need for a lung transplant?
I was diagnosed with IPF (Idiopathic Pulmonary Fibrosis) in 2013 and received a double lung transplant in 2016.
When were you placed on the transplant list?
I met with my lung doctors in August 2014 and was on 'the list' by July 2015. Before I was put on 'the list' I had to lose weight. And the doctors looked for other health issues needing to be addressed. I did have a few issues and they were taken care of. It was hard to lose the weight and it was difficult to work out while packing an oxygen tank, but I did it!
Did you know you'd spend about three months in Vancouver post-transplant?
We were briefly told about some of the issues, e.g. the need for a 24/7 caregiver. Fortunately my wife's employer gave her medical leave. Once we were assigned a social worker, we learned much more, such as being told that if we were unable to cover temporary housing and living costs we could possibly be taken off 'the list.' We were given information regarding sources of financial assistance, but we found that we didn't qualify. We were told the costs would total $20,000 to $30,000 and could be more if complications required we stay longer. Add to that, the financial stress of maintaining our household in Nanaimo. It was overwhelming.
Once on 'the list' you can get ‘the call’ anytime. Without knowing when 'the call' would come, how did you plan?
The social worker gave us a list of possible accommodations with contact numbers and pricing. Without an actual date, we had to cross our fingers and hope when the time came a place would be available. In 2016, rates for temporary housing near VGH were $2,500 to $3,500 a month for a hotel suite or furnished apartment. There was no way to really prep because you never know when you were going to get “the call.” You pack a bag and catch the next ferry over. The next few days are all about the surgery and being in the hospital room. Getting settled and acclimatized takes a few days.
Can you speak to some of the hardships you faced ?
We had no idea how we were going to pay for it all without losing our house. Word spread throughout our family of what we were up against. We have a family member living in Surrey. She offered to let us stay there as long as we needed. So, we got a break on rent, but the gas travelling back and forth to VGH nearly every day adds up, as does paying hospital parking. We also ate out a lot due to the long days travelling back and forth to the hospital. The hardest was keeping mortgage and household bills paid, while also paying to live in Vancouver. My wife went home by ferry to check on things every week or two. Our youngest daughter was able to look after our dogs. It was hard being away from our pets, and being far from family and friends. Thankfully, we developed a 'transplant family' getting to know other patients and caregivers who are all still part of our family today.
How much did it cost you both to stay in Vancouver?
It cost us approximately $18,000. And this was without having to pay rent.
What advice can you offer future lung transplant patients and caregivers?