Unfortunately, Social Services would not pay for my apartment in Vancouver until the day I went into surgery for my lung transplant. I was in a coma and my family had nowhere to go...
What is your lung disease story?
In 2003, I was diagnosed with a rare liver disease that affected my lungs. It was called Alpha Antitrypsin Deficiency. I was in both the prime of my life and career… it was devastating.
When were you actually placed on the transplant list?
It was a scary time. My condition declined as time went on. My doctors made it very clear that a transplant was inevitable. The specialists wanted a commitment from me that I would follow through with the process. I agreed. I was placed on the active transplant list in April of 2015. My transplant was on February 6, 2016.
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 that I would need to acquire housing and have to raise funds for my post-transplant. That was scary! My sources of income were CPP- LTD (Canada Pension Plan- Long Term Disability) along with a private disability pension through my previous employment.
Now, here is where it gets tragic. I didn't qualify for social assistance toward my housing in Vancouver because I made $100.00, or more than welfare rates. I was in a panic and it had a devastating effect on my health. The clinical social worker was a huge help and walked me through the appeals process. With the threat of having the media involved, Social Services finally approved my housing funding in Vancouver.
Another detail that derailed the whole process was that the Transplant Team said I needed stable housing to return to in Nanaimo post-transplant. Social services wanted me to give up my home in Nanaimo. One organization wanted me to do one thing and another organization to do another! It was frustrating, to say the least. I needed to have access to at least $10,000.00 to cover living my expenses.
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, most people get "the call,” but I did not. A matter of weeks after completing my last pre-transplant test, I suffered a collapsed lung. Both of my lungs were in very bad shape and I couldn’t sustain life on one lung alone. I don't remember much, actually – not even getting to the hospital. My specialist in Nanaimo somehow kept me alive. I was brought out of my coma for brief periods to visit with my kids. I would eventually have been taken to Vancouver, but there were no lungs available. One of my lungs collapsed again, so I was instead sent to Vancouver General Hospital immediately. My family went with me as the situation was dire. I was stabilized in the ICU. My daughter and ex-wife stayed because it became a waiting game.
Unfortunately, Social Services would not pay for my apartment in Vancouver until the day I went into surgery. I was in a coma and my family had nowhere to go. Thankfully, a building manager in Vancouver knew us from before as we had stayed there previously. He was kind enough to put my family up for a couple days, however, the waiting turned into several weeks. The Cancer Society through the Jean C Barber Lodge then managed to put them up for a small fee. I do believe the Band also helped for a couple weeks. There wasn’t enough money in their budget to cover the entire stay. Thank goodness for the Cancer Society!
Do you know how I found out I had had the transplant? My daughter had been waking me every so often, to tell me to be strong and then boom, I was out again. Then, they woke me up my daughter said, “You did it, Dad, you got new lungs!” I almost didn’t believe her until I looked down and saw all my pipes and hoses. I was in awe!
What hardships did you face through being displaced from your own home for that period of time?
I went into the hospital in January of 2016. After my transplant on February 6th, I was sent to GF Strong in Vancouver in April for rehabilitation. I had no feeling below the waist so GF Strong taught me how to walk again. It was incredible! I was discharged in June and was able to go back to my apartment in Vancouver. I was finally allowed to go back home to Nanaimo in July. So, hardships, yes, there were many.
Besides physical limitations, I was worried that the money I had would run out. My caregiver finished up after four and a half months, so I became very lonely. I was concerned about my ability to get back and forth from my home in Nanaimo to Vancouver General Hospital for my check-ups. I also tried to visit my reservation as much as I could. That was very important to me, however, because of the distance, secondary and gravel roads, the travel was difficult.
Insecurity also crept in. I was able to put up a brave front, but I worried about something going wrong and how I would deal with it. I was still using a walker for mobility. My motivation to get through it was my kids and my grandchildren. I figured I had a lot more living to do, especially with the gift of life I had just received. Things turned out well – I never gave up.
How much did it cost for the time you spent while in Vancouver after your transplant?
I figure it was close to $40,000.00. Between my cash and credit cards I had $8500.00 plus my monthly pension, however, I also had my home in Nanaimo to maintain. It was very expensive. Through my kid’s hosting fundraisers and a Go Fund Me page, along with two grants from the BC Lung Association, I was able to survive. To this day, I am still financially challenged.
I understand that you are now a candidate for a second lung transplant? Can you tell us about that?
Yes, I am a candidate for another lung transplant. Two years ago I went from a 94% lung function to 50% in less than in a month. After a number of tests over time it was determined that I have chronic rejection. As long as my other organs continue to function properly, a second transplant will be a go. There are still some hurdles to jump, but my fingers are crossed. Of course, if the transplant does happen it will require accommodation again. I’m so relieved that the project of the LTHouse BC (Lung Transplant House of BC) is underway for those in need. That would alleviate a lot of problems.
Do you have any suggestions on what could be done to help others from out of town that might go through what you have?
My suggestion would be to do your homework as far in advance as you can. Get to know the layout of Vancouver and how large a city it is. It will be a culture shock, for sure. Talk with the people organizing the new LTHouse BC. What an amazing project it is! You should also join lung related Facebook groups. They are available for support, resources, and information. Try and save as much money as possible. There are many ways to raise funds. Reach out.
Most of all, just know that you are not alone. People are there for you.