Knowing I needed a lung transplant was overwhelming. It was tough to be away from home and also have to deal with a huge financial burden. But my community really supported me – if you want help, you need to ask for it.
What type of lung disease did you live with before your transplant and when you were diagnosed?
When I was four, I was diagnosed with a rare lung disease called Idiopathic Pulmonary Hemosiderosis. I was not supposed to survive because the disease is extremely rare. Later in life, I developed COPD and survived. I had my double lung transplant on June 26th, 2018 at the age of 53.
When were you actually placed on the transplant list?
I decided with help from my local doctors to seek out my options. Eventually, I got to see a transplant doctor named Dr. Levy. His exact words for me were, “You’re quite the rare individual.” He said that we should get started, but I replied that I wasn’t ready to get a transplant yet. He then asked why I was there and I explained that I just wanted to meet the transplant team. He said I will eventually need a transplant, so to keep in touch. One year went by and during that time I had a lung episode. I had to stop working. Shortly after, I had another meeting with a Dr. Nador. The Clinical Nurse and Dr. Nador listened to me and made the decision it was time for me to start my work-up. I signed the transplant consent form in May of 2017.
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? And were you also aware that you would have to incur all the costs on your own such as, accommodation, food, gas, parking, etc.?
Yes, I was aware and it was very overwhelming. Vancouver is extremely expensive, as we know. I told the doctors that I don’t have that kind of money. I could use my credit to cover the costs, but it would leave me very much in debt. I would have to cover my own home expenses, as well. Imagine… all this for a person who can’t breathe.
Once you are on the transplant list, you can get the call anytime. What did you do to arrange your accommodation, etc., while waiting?
Yes, the call could come at anytime and finding a place to stay was going to be hard. Rent in Vancouver was skyrocketing. My sister and her husband Mike were my caregivers, so the day my call came, Mike sprang into action and started looking. He looked for two days with no success. We could not afford 4-6 thousand dollars a month. Mike had an idea about placing his own ad online. He got a hit almost immediately about a heritage house in Kitsilano. The man asked us to take care of the place for three months. I was in the hospital during all this. All of this was taken care of in the first week. It was a major stroke of luck and some hard work, but everything came together nicely. Mike and Nadine were amazing!
Did you face any hardships through being displaced from your own home for that period of time?
Being away from home is tough. I’m a small town kind of guy, so recovering in a city a big as Vancouver was hard. I was away from my family and pets, which was difficult. Things that broke down at home were a burden for my wife to take care of. It was hard to keep up with the bills over the phone, as I do the banking in the family. I’m also the driver, so it was not easy for my wife to shop and get to work without me for transportation. It was simply hard on me mentally to be away from home for so long. But we got through it!
How much did it cost for the time you spent in Vancouver after your transplant? How long was it?
The total amount spent in Vancouver for my three month post-transplant recovery was around $17,500.00. I was lucky to have great friends and a town that rallied behind me. With their help we raised $15,000.00. We put on a few Beer n’ Burger fundraisers and I also set up a Go Fund Me account. I was fortunate enough to have had so many people come to my rescue.
Do you have any suggestions on what could be done to help others from out of town that may be going through what you and your family went through?
Don’t be afraid to ask for help. I even wrote the Lions Club of Nanaimo. They came to my door with a cheque for $1000.00. I encourage anyone who needs financial help to ask. You’ll be surprised with the generosity of people in your community. The cost can be large, but keep all your receipts for tax purposes. Have your affairs in order when doing your taxes for that year. You will have deductions, so keep the receipts and be prepared to prove the cost of your stay. I know it’s easier said than done, but try to relax and take the process in. Your post-recovery will eventually end and you will go back to your home.