It was mostly finances and the stress of leaving everything behind while other people took care of our home. We did not have any transportation while in Vancouver, so finding grocery stores and other necessities nearby had its challenges.
What type of lung disease did you live with before your transplant and when you were diagnose?
I was diagnosed with COPD in 2013. My condition started to deteriorate about a year or so before that. It all happened very quickly.
When were you actually placed on the transplant list?
I was originally placed on the transplant list in February of 2016. But then the doctors found some pulmonary nodules on my lungs and were worried they might be cancerous. After a series of testing over the next four months, it was determined that the nodules were noncancerous. What a relief! I was then placed back on the transplant list on June 27, 2016 and had my lung transplant on July 11, 2016. We were very fortunate.
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? Were you also aware that you would have to incur all the costs on your own such as, accommodation, food, gas, parking, etc.?
Yes, we were aware of those facts. The social worker was very thorough with providing this information.
Once you are on the transplant list you can get the call anytime. What did you do to arrange your accommodation, etc., while waiting?
Coming from outside of Vancouver, once you receive the call, your support person is then on the hunt for a place to stay. We had also made previous arrangements in Whitehorse for friends to look after our house, plants and pets.
What hardships did you face through being displaced from your own home for that period of time?
It was mostly finances and the stress of leaving everything behind while other people took care of our home. We did not have any transportation while in Vancouver, so finding grocery stores and other necessities nearby had its challenges. We bought a shopping tote to carry groceries and Valerie purchased a used bicycle that helped in searching our neighbourhood.
Valerie - can you tell us what it was like to have gone through this experience from a caregiver’s point of view?
My perspective as a caregiver during our three month stay in Vancouver was like looking in from the outside, but at the same time knowing my role was crucial. As a caregiver you have to be generous with your time, tolerant, and patient despite the fatigue that comes from the change in routine and the change in your surroundings. The medical part of Marc’s life was out of my hands, so my focus was on being a useful supporter and organizing our life outside the hospital. During Marc’s stay at VGH, pre and post-op, I stayed at The Park Inn in Vancouver and then rented a room until we moved to our final stay. This was an apartment called Oakway Manor right across the street the VGH. We stayed there for the next three months of Marc’s recovery. The social worker from the transplant team provided very useful information in regard to lodging, funds, etc. The transplant team and the hospital staff were all incredibly helpful.
Approximately how much did it cost you for the time you spent while in Vancouver after your transplant?
We stayed at Oakway Manor for two and a half months. The rent alone was $10,000.00. Food and other miscellaneous costs came close to $5,000.00. We spent close to $15,000.00 for the ten weeks while in Vancouver. We didn’t have a vehicle, so there were no added expenses for parking, gas, or traveling. From the Yukon Government, we were assisted with some funding, but not until I was out of the hospital and attending rehab. We were very grateful.
Do you have any suggestions on what could be done to help others from out of town that may go through what you and Valerie have?
Make sure you are ready from day one once you get listed. Things can happen fast and they usually do! The fewer things you have to worry about, the more you can concentrate on your post-transplant rehab. Remember, you are there for at least three months, so plan for things to keep your mind and hands busy!