What lung condition led to your need for a lung transplant?
I was first diagnosed with COPD about 15 years ago but it didn’t really impact my life at first. However in October 2018, after returning home from a trip, my shortness of breath got much worse. They suspected pneumonia or an exacerbation of my COPD. It was bad enough that I was hospitalized, and after a week in care, I was discharged, but needed two litres supplemental oxygen upon exertion. I purchased a portable oxygen concentrator and was able to continue to work as a Cell Guard in our local RCMP Detachment. Unfortunately, over the next few months, my need for oxygen increased while my energy decreased - so much so, I had to retire from my job. That was the saddest day of my life. By June 2019, I was diagnosed with severe Pulmonary Hypertension and was using six to ten litres of oxygen.
When were you placed on the transplant list?
Dr. Swiston at the Pulmonary Hypertension clinic felt that my disease had progressed beyond the point medication could help and referred me to the Transplant Clinic in 2019. Dr. Levy, a transplant doctor, said my case was complicated but agreed to start the pre-transplant process. We met other BC Lung Transplant Team members, including Dr. Lee, who felt surgery was possible. That was the news we prayed for. The Transplant Team was amazing. I was placed on 'the list' in February 2020 and received a transplant on June 25, 2020.
Did you know you'd spend about three months in Vancouver post-transplant?
Yes. As we are from out of town, we knew we would need to figure out a plan. We knew temporary accommodation would be costly. Luckily, we saved money when I got sick by not taking any vacations.
Once on 'the list' you can get ‘the call’ anytime. Without knowing when 'the call' would come, how did you plan?
We had originally planned to live at the Easter Seal House, which is inexpensive in comparison to some other options. Unfortunately, the Easter Seal House was closed due to COVID. My wife did some research on Airbnb, apartment rentals, etc. but when the call came however, she asked a good friend to make more inquiries. My wife didn't need the added stress of driving in a city she was unfamiliar with, so we didn't bring our vehicle. Our friend found us an apartment right across the street from VGH. The monthly cost was about $1,000 more than we hoped, but the convenience of being able to walk 500 steps to medical appointments was worth every penny. We could also walk pretty much everywhere. Stores such as Safeway, Save-On Foods, Canadian Tire, drug stores, etc. were just a 5-15 minutes away.
Can you speak to some of the hardships you faced?
We missed our friends and life in Penticton. We asked some friends to house-sit our home and pets. My wife, who still works full time as a Registered Nurse at the Penticton Hospital, had the support of her manager and colleagues to be away for several months. She was blessed with accumulated sick days and could also take personal stress leave. After that, she was able to go on EI compassionate care. Though our income was reduced, the gift of this new life is worth any sacrifices needed.
Wendy, as caregiver, can you tell us what the experience was like for you?
I was blessed to know someone whose husband received a lung transplant just three years earlier. She shared a lot of tips. By nature, I am a very organized person. I was sure to pack things for Vancouver that made our temporary home feel like our home - some family pictures, candles, a favourite blanket, craft supplies, new books and thank you cards not to mention our Bluetooth speaker, HDMI cord to connect the computer to a TV for wathching NetFlix etc.! I was grateful to have been as organized as I was. I literally walked in the door from a 12-hour night shift when 'the call' came. I ran on pure adrenalin for the first few hours. I knew I would not see Jerry until well after surgery, but I wanted to be at the hospital as soon as possible. Within minutes of 'the call' a friend was on her way to pick me up and drive me to Vancouver. She had also booked us to stay near VGH for the first couple of nights. I was so grateful.
As a Registered Nurse, I was somewhat prepared to see Jerry in the ICU, but admit upon entering tears came. I will never forget his first nurse and her compassion. She immediately took me by the shoulders and knew how overwhelmed I felt. I had such faith and confidence in everyone caring for Jerry that I was at ease not being by his bedside all the time. I am in awe of the medical expertise that goes into transplant surgery and care.
As Jerry was in the hospital during COVID, visiting hours were restricted giving me more spare time. I got to know where all the stores were and after the first couple weeks of carrying groceries in my backpack, I noticed other shoppers using little pull shopping carts. Wow did my back thank me!
We are very fortunate to have supportive friends and family who checked up on us frequently. Our Transplant Team Social Worker Katrina checked in several times. I knew she and others were there if I needed anything. It was a lonely time but I kept active. Jerry and I had created a private Facebook page to keep our friends and family informed that I updated almost daily. It saved a lot of time trying to text and call people. I also took a lot of pictures - little things like the book I was reading, or a beautiful garden I would pass on my walks. It is a permanent record that Jerry enjoyed reading once he was well enough.
How much did it cost you both to stay in Vancouver?
We spent about $10,000-$14,000 on accommodation costs and virtually nothing in transportation. We are very fortunate that my wife has extended medical insurance which helped and were financially able to afford this journey. However, without our knowledge, friends, colleagues, and our church community sending us unexpected financial gifts, things would have been more difficult. We are blessed.
What advice would you offer lung transplant patients and caregivers awaiting 'the call?'