What type of lung disease you live with before your transplant?
I was first diagnosed with COPD about 15 years ago but it didn’t really impact my life. In October 2018, after returning home from a trip, I had worsening shortness of breath and my health care providers suspected pneumonia or exacerbation of my COPD. After a week in the hospital, I was discharged home but needed supplemental oxygen of 2 litres upon exertion. I purchased a portable personal oxygen concentrator and/or pre-owned small oxygen tanks and continued to work as a Cell Guard in our local RCMP Detachment. Unfortunately, over the next few months, my oxygen needs greatly increased and my energy decreased until 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 using 6-10 litres of oxygen.
When were you actually placed on the transplant list?
I had a telehealth conversation with Dr. Swiston at the Pulmonary Hypertension clinic and he felt that my disease was beyond the help of any medication and referred me to the Transplant Clinic. My wife Wendy and I first met Dr. Levy in September and though he felt my case was quite complicated with several risks, he agreed to start the pre-assessment process. We met with the other team members and Dr. Lee in October and he felt surgery was in fact possible. That was the news we prayed for. The transplant team was amazing; getting all the tests and procedures organized. I was placed on the active waiting list on February 18, 2020. In short four short months, despite a Covid-19 shutdown, I received the miracle call and was transplanted on June 25th, 2020.
Were you aware that when the time came for your transplant you would need to spend at least three months in Vancouver for post-transplant recovery?
Yes, we certainly were. As we are from out of town, we knew we would need to figure out a plan for accommodation, etc. We knew it would be a costly few months, but the money saved from not being able to take a few vacations the past two years would be spent while needing to live in Vancouver for the few months.
We all know that once you are on the transplant list you can get the call anytime. What did you do to arrange your accommodation, etc., while waiting?
We had originally planned to live at the Easter Seal House, which is quite inexpensive in comparison to some other options. Unfortunately, the Easter Seal House was closed due to Covid-19. Wendy did some research on Airbnb, apartment rentals, etc. When the call came, she asked a good friend to make some inquiries to find us housing as close to VGH as possible. We already had decided not to bother with our vehicle while living in Vancouver. We didn't need the additional stress of Wendy needing to drive in a city not familiar to us. Our friend literally found us an apartment across the street from the Diamond Center. Though the cost was about $1000 more per month than we originally had planned, the convenience of being able to walk 500 steps to appointments has been worth every penny. No need to ever use public transportation. We could pretty much walk everywhere; stores such as Safeway, Save On Foods, Canadian Tire, drug stores, etc. were just a 5-15 min walk away.
Please tell us some of the hardships you faced.
For us, we have felt very few, though of course missed our friends and life in Penticton. We had planned for some friends, who were in between housing options to house sit our home and two fur babies for us.
The timing of my transplant was absolutely perfect. Wendy, who still works full time as a Registered Nurse at the Penticton Hospital had the support of her manager and colleagues who knew at any time she would be away from work for several months. She was blessed with having a large sick bank and so used several weeks as personal stress leave, used vacation and overtime she had banked for several more weeks and will go on compassionate care leave for the remaining time needed to care for me. As the COVID pandemic continues, she will likely stay off work for several weeks longer than we first planned. Though our income will be reduced, the gift of this new life is worth any sacrifices needed.
This next question is for your wife Wendy. What was the experience like from a caregiver’s point of view?
I was blessed to know a friend/co-worker whose husband received a lung transplant just 3 years ago and watched her on their journey. As soon as the words transplant were brought up to us, she shared all the tips of her experience to help me prepare. I am a very organized person by nature and had bags packed, lists made, and as many plans made as we possibly could. I had enough clothes to last us 2 seasons ready to go and made sure to include a few favorites (scarves, jewelry, etc), I knew I would really appreciate them more during our time spent in Vancouver than every day at home. I also had some things packed to help our temporary home feel like our home…. some family pictures, battery candles, a favourite blanket, craft supplies, a couple of new books, thank you cards, Bluetooth speaker, HDMI cord to connect the computer to a TV (watched lots of NetFlix), etc, etc. As it turned out, 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 transplant team called. I ran on pure adrenalin for the first hour or two. I even had lists with all the last minute things I needed to pack as I went room to room!! Even though I knew I would not be able to see Jerry until well after surgery and in ICU, I had to come as soon as possible, just in case. Within minutes of our call, a friend was organized and on her way to pick me up and drive me to Vancouver. (Jerry was on his way with BC Air Ambulance within one hour of the call). She also booked the hotel near VGH for us to stay at for the first couple of nights.
As a Registered Nurse, I was “somewhat” prepared to see Jerry the first time in ICU but admit, upon entering his room, tears came. I will never forget his first nurse and her compassion for me. She immediately took me by the shoulders for a hug and said how she knew how overwhelming this must be. I always 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 the surgery and care of our loved ones in the days following.
As Jerry was in the hospital during Covid-19, visiting hours were very restrictive and I found I had more spare time than I thought and used this time to go for walks, went for a couple of massages, had my hair done, and even a pedicure! I got to know where all the stores etc were and after the first couple weeks of carrying groceries in my backpack, I noticed other shoppers using little pull shopping carts, and wow did my back thank me!! We are very fortunate to have very supportive friends and family who checked up on me frequently. Katrina the Social Worker with the transplant team checked in with me several times, I knew she and others were there if I needed anything. It was a lonely time but I tried my best to keep body and mind active. We had created a private Facebook page to keep our friends and family informed about Jerry’s recovery and progress that I updated almost daily. It sure saved a lot of time trying to text and call so many individuals. I often sat in the park in the sun, with a coffee or iced tea as I updated the group page. 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 that I would also post on the page. It is a permanent record that Jerry enjoyed reading and following once he was well enough.
Approximately how much out-of-pocket expenses did you incurr for the time you spent post-transplant in Vancouver?
We have spent about $11,000 on accommodation costs, the food we would have had to purchase anyhow, and virtually nothing in transportation. We are still in Vancouver, have been here for three months, and hope to be able to return home in the next 2-3 weeks. As mentioned above Wendy’s salary will be diminished for several weeks. However, we are very fortunate that Wendy has extended medical insurance which will reimburse us about $210 per month towards living expenses. This also includes mileage for her drive from our home at the time of the transplant and also our return home. This has been and will be the case for travel to Vancouver for medical appointments as well. We felt comfortable in being able to afford this journey. However, without our knowledge, friends, colleagues, and our church community sending us financial gifts that had been unexpected but deeply appreciated, we felt more at ease.
Do you have any suggestions to help others in similar situations?
The miracle call can come at any time… days, weeks, months and for some perhaps years but always be as organized with plans thought out as much as possible. For us, this made the first hours, days, and the entire journey as stress-free as possible. Remember you are not alone, find someone who has gone through this journey and ask them as many questions as you can think of. In fact, there is a great Facebook Support group that has been an incredible source of information and support for everyone at every step along your journey. We started a journal/diary with Jerry’s first appointment with the clinic that Wendy updates all the time. It sure has helped us keep track of so much over this past year. We admire the work of the Lung Transplant House BC Initiative Steering Group in expending energy, time, and money in assisting those of us who live outside the Vancouver area for housing and financial assistance. And to those who are just starting on their own journey for a lung transplant, if there is anything we can do, please reach out to us.