Madeleine's Story

In 2016, I was asked by two friends if I was already on the transplant list. I was stunned – I thought that because I had created my own lung issue, I wouldn’t qualify for one...

What type of lung disease did you live with before your transplant and when you were diagnosed?

I had COPD due to smoking and my family had a genetic predisposition as we later discovered. I was diagnosed with COPD in my 40’s but I lived a normal life into my 50's, and an almost normal life into my 60's. I had to go on oxygen for sleeping in 2013, full time oxygen in 2014 and liquid oxygen in 2017, which really restricted my movement.

When were you actually placed on the transplant list?

In 2016, I was asked by two friends if I was already on the transplant list. I was stunned – I thought that because I had created my own lung issue, I wouldn’t qualify for one. I spoke with my family doctor in the spring of 2017 and started down the transplant path. In September of 2017, I qualified for the list and in June 2018 I had my transplant.

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.?

I was told by the transplant team that I would have to find accommodation for myself and a caregiver for three months post-transplant. They also informed me that I would have to pay all expenses for accommodation, gas, vehicle, etc. Fortunately, I had a friend living in Richmond who agreed to be my caregiver and let me stay with her for three months.

Post-transplant, I met people who had no funds at all. They did receive financial help, but only because they had absolutely no funds available. Because I was a typical middle-class person, I had savings that I could draw on if necessary. However, I would have been left with little to survive on had it came to that much reduced income. I was incredibly lucky to have a friend to step in.

Once you are on the transplant list you can get the call anytime. What did you do to arrange your accommodation, etc., while waiting?

I had the “packed bag” all ready. My friend and caregiver in Richmond and my sister were also ready to respond immediately. I was on the transplant list for only nine months, so I was very fortunate.

What hardships did you face through being displaced from your own home for that period of time?

I really had no hardships being displaced from my home in Coldstream. I did, however, miss my horses while I was away!

What was this experience like for your caregiver?

She basically gave up her freedom and her privacy for most of the three months I was there. I was very lucky to have her. 

How much did it cost you for the time you spent while in Vancouver after your transplant? 

I gave my caregiver $500.00 a month rent for four months. I bought all the food and paid for all the gas and hospital parking. All in all, the cost of being in Vancouver for the three months was close to $9000.00.

Do you have any suggestions on what could be done to help others from out of town that may go through what you have?

In Edmonton, pre-transplant and post-transplant recipients stay in nursing apartments with exercise facilities close by. I know we don't have anything like that in Vancouver, but even if there could be a subsidy for those needing housing that would help immensely. A communal situation might be the ideal setting for new transplant recipients.  

 

 

Page Last Updated: 13/07/2020