Ray's story
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What lung condition led to your need for a lung transplant?
In November 2014, I was diagnosed with IPF (Idiopathic Pulmonary Fibrosis). I was feeling tired and run-down all the time. For years before, I had been out of breath when I exerted myself, but I had put that down to old age and being out of shape. After my diagnosis, I started to go downhill fast. I had trouble walking short distances and was on oxygen. My wife and I decided to travel across Canada in our RV to visit my son and sister to explain in person what I was going through. When were you placed on the transplant list? I was placed on the transplant list in April 2017. Finally, on July 14, 2017, I received my lung transplant. We had a false run four weeks prior to my transplant because my donor had pneumonia so, we had to leave VGH and drive 500kms back home. It was a good learning experience, but very scary. The second time was easier because we had gone through process already. Did you know you'd spend about three months in Vancouver post-transplant? We were aware of the upcoming costs and had been saving for two years. A number of service clubs in Salmon Arm came to our aid, including The Shuswap Rotary Club and the Order of the Eastern Star. Also, the motorcycle club I belonged to, the BC Lone Wolves and local businesses such as Samson Cleaning Supply and the Lady in the Tub, hosted fundraisers. They also set up a GoFundMe account for us. With their help, our family’s help and our savings, we thought we would be okay. Once on 'the list' you can get ‘the call’ anytime. Without knowing when 'the call' would come, how did you plan? After the transplant and while I was in ICU, Cathie went house hunting. She was lucky to find a room in a house two blocks from the hospital that included free parking. It was a small basement suite, which was specifically rented out to transplant patients like us. Cathie then headed back home to Salmon Arm to collect what we would need for our three to four month stay. Can you speak to some of the hardships you faced? I stayed in the hospital for 18 days. Then, I had to return to the hospital almost every day for clinic visits and physiotherapy to gain my strength back. This lasted four months. When my visits to clinic stretched out to every two weeks, we headed home and just drove back every two weeks. From there, it was once a month, and then every three months after one year. How much did it cost you both to stay in Vancouver? The cost of spending four months in Vancouver included $2,000 per month for rent and food. With medication not covered, travel, gas or everyday items, costs were close to $35,000. I got some of that money back on my income tax but you only get back what you pay in. Since I was not working before my transplant, my income was very low. Had it not been for friends and family, we would not have had the funds to get my transplant. What advice would you offer future lung transplant patients and caregivers?
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