For years before my diagnosis, I had been out of breath when I exerted myself. But I had put always that down to old age and being out of shape...
What type of lung disease did you live with with before your transplant and when you were diagnosed?
In November 2014, I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF). I was feeling tired and run-down all the time. For years before, I had been out of breath when I exerted myself, but I had put always that down to old age and being out of shape. After my diagnosis, I started to go downhill fast. I had trouble walking short distances and was on oxygen. My wife and I decided to travel across Canada in our RV to visit my son and sister, to explain in person to them what I was going through.
When were you actually placed on the transplant list?
I was placed on the transplant list in April of 2017. Finally, on July 14, 2017, I received my lung transplant. We had a false run four weeks prior to my transplant because my donor had pneumonia so, we had to leave Vancouver General and drive 500 kilometres back home. It was a good learning experience, but very scary. The second time was easier because we had gone through process already.
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? Did you know that you would have to incur all the costs on your own such as, accommodation, food, gas, parking, etc.?
We were aware of the upcoming costs and had been saving for two years. A number of service clubs in Salmon Arm came to our aid, including The Shuswap Rotary Club and the Order of the Eastern Star. Also, the motorcycle club I belonged to, the BC Lone Wolves and local businesses such as Samson Cleaning Supply and the Lady in the Tub hosted fund raisers. They also set up a Go Fund Me account for us. With their help, our family’s help and our savings, we thought we would be okay.
Once you are on the transplant list you can get the call anytime. What did you do to arrange your accommodation, etc., while waiting?
After the transplant and while I was in ICU, Cathie went house hunting. She was lucky to find a room in a house two blocks from the hospital that included free parking. It was a small basement suite, which was specifically rented out to transplant patients like us. Cathie then headed back home to Salmon Arm to collect what we would need for our three to four month stay.
What hardships did you face through being displaced from your own home for that period of time?
I stayed in the hospital for 18 days. Then, I had to return to the hospital almost every day for clinic visits and physiotherapy to gain my strength back. This lasted four months. When my visits to clinic stretched out to every two weeks, we headed home and just drove back every two weeks. From there, it was once a month, and then every three months after one year.
How much it cost for the time you spentwhile in Vancouver after your transplant?
The cost of spending four months in Vancouver included $2,000.00 per month for rent and food. With mediation not covered, travel, gas and every day items were close to $35,000. I got some of that money back on my income tax but you only get back what you pay in. Since I was not working before my transplant, my income was very low. Had it not been for friends and family, we would not have had the funds to get my transplant.
Do you have any suggestions on what could be done to help others from out of town that may go through what you have?
To get help, speak with the Transplant Centre and the BC Lung Association. BC Lung helped us with a grant to pay some of our rent. Enquire with clubs and groups in your area. They are happy to assist and do have funds for these kinds of needs. Some clubs, unions, and associations have places to stay in Vancouver, so check them all out. Research the internet. Every little bit counts!