Ray's story

What lung condition led to Ray's need for a lung transplant?
Idiopathic Pulmonary Fibrosis
When was Ray placed on the transplant list?
After seeing local specialists for a couple of years, Ray was referred to Dr. Khalil at VGH. He was advised in early 2016 he would likely need a transplant but was completely against it.  However, by Christmas the same year, he was hospitalized. His oxygen level had deteriorated and they put him through numerous pre-transplant tests, which revealed another health issue. Ray’s body was creating an abnormal amount of antibodies so finding a 'lung match' would be more difficult.  About a year later Ray was officially placed on 'the list.'
Did you know you'd both spend about three months in Vancouver post-transplant? 
Yes. Luckily we had family in Langley and the Vancouver area that we could stay with. My employer also helped ensure I would be eligible for EI compassionate care benefits. 
Once on 'the list' you can get ‘the call’ anytime.  Without knowing when the call would come, how did you plan?
​We felt we had time to put money away and establish a reserve fund but 'the call' came just one month after Ray was put on 'the list.' Needless to say, we were in shock as it all happened so fast! I remember it clearly. Ray was out Christmas shopping with his oxygen tank, and I was the one at home that received 'the call.' Sadly, as a result of the opioid crisis there were more donors and a near perfect match had been found. Ray was sent via Air Ambulance to VGH and I just made the 5pm ferry to meet him at the hospital.
Can you speak to some of the hardships you and Ray faced?
Ray’s surgery went well, but his diaphragm had become weaker as he wasn't using his lungs a lot. A few days after surgery he was back in the ICU. It was a scary time. He was fighting pneumonia, and there was the possibility that his diaphragm was paralyzed. I felt I needed to be closer to the hospital for my own sanity as I was beginning not to remember how I drove home each night. I started looking for accommodation nearer the hospital.  Because of his complications, Ray's recovery time was longer than expected. 
How much did it cost you both to stay in Vancouver? 
$14,000.
Can you provide some advice for future patients and caregivers? 

• Don’t be afraid to ask questions! The doctors and nurses are amazing, but not gods. Trust your gut.  
• Talk to a social worker, support groups and spiritual advisors. Use the help available.
• The family care office on the main floor was amazing. Don't be afraid to approach them.
• Talk about your feelings, but with people who can relate and understand what you are going through.
• Keep active. There are pools and walking areas close by and easy to find.
• While in hospital, help with patient care (changing beds, tidying up). Do what you are comfortable doing. 
• Take breaks to recharge yourself. It’s a long haul and for some, it may result in a form of PTSD when the dust settles. Be gentle on yourself. It is an incredibly emotionally, physically, mentally and spiritually draining event for the patient as well as the caregiver. 
• When you secure a temporary Vancouver address, you may want to change your vehicle insurance. Upon doing so, you may want to consider getting a parking permit from City Hall to save money by parking on the streets close to VGH. 
• Having a family member initiate a GoFundMe account or hold a fundraiser event(s) will help. Folks are very generous. They want to help and every dollar counts! Don’t be too prideful to accept the help.