We urge future lung transplant recipients to investigate and pursue every service, accommodation and other means of support out there. Be your own advocate.
What type of lung disease did you live with before your transplant and when you were diagnosed?
Twenty years after I quit smoking, 1995, I was diagnosed with COPD.
When were you placed on the transplant list?
After undergoing more than three years of testing, I was put on the transplant list in February 2015. I received the wonderful call on September 1, 2015.
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 having to spend three months in Vancouver at our own expense.
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 did nothing as I never thought I would get the call. The cut-off age at the time was 69 years. I was 68 and a half when I did get the call.
We were very fortunate. Elaine is a cancer survivor, so she knew of the Jean C. Barber Lodge, which is a cancer housing facility for patients needing housing and board. There was a nurse on call twenty-four hours a day should something happen. We were able to become a resident there for the duration. Fortunately, the daily cost was very livable and transportation by the Free Masons was provided by donation. As for our car there was a parking facility near the Lodge that the monthly cost was approximately $100.00 a month.
What are some of the hardships you faced through being displaced from your own home for that period of time?
I had an easy time post-transplant and I knew I was in good hands. My wife Elaine, however, bore the brunt of the hardship.
Elaine – can you tell us what it was like to have gone through this experience from a caregiver’s point of view?
The first shock is to receive a phone call from your excited husband telling you to get home from work as he had to be in Vancouver right away. The wonderful Air Ambulance provided us with a lovely flight to Vancouver General Hospital from Qualicum Airport. Once there, I found myself stranded in a huge hospital. I spent eight long hours in a vacant waiting room watching reruns of old Perry Mason. Finally, Dr. Yee phoned with the successful news. He is a very compassionate, thoughtful physician and was concerned about me finding accommodation and such – as he is with all his patients.
Fortunately, I was able to book accommodation at the Jean C. Barber Lodge. I was told Harry would be in the hospital for three weeks, so I took the opportunity to go home and wrap things up for the next three months. Unexpectedly, ten days later I was told I must return to Vancouver as Harry was to be discharged. I had to find a place for us to stay. Once again Jean C. Barber saved us. Upon Harry's insistence, he wanted me to bring a vehicle over to Vancouver, but I have never driven in a city larger than Nanaimo.
For at least two weeks Harry was immobile and I was bored. His constant loud snoring was unbearable (he never snored before). Then, the prednisone kicked in. When he was feeling better, he wanted me to drive him around Vancouver. Having a co-pilot on prednisone is another test of patience!
Around mid-November, Harry was well established, and I happily returned home and left him to his own devices. The Physicians and staff at VGH are amazing! All the staff at the Jean C. Barber Lodge are wonderful, as well. Being from out of town, it is difficult for the caregiver to make arrangements for accommodation, etc.
Something else I discovered is that people from Alberta and the Yukon are provided with some Government assistance.
Approximately how much did it cost you for the time you spent while in Vancouver after your transplant?
For the two and a half months we were there it cost us approximately $11,000.00.
Do you have any suggestions on what could be done to help others from out of town that may go through what you and Elaine have?
A facility like Jean C. Barber Lodge would be a great asset to those going through post-transplant. We urge future lung transplant recipients to investigate and pursue every service, accommodation and other means of support out there. Be your own advocate.