What lung condition led to your need for a lung transplant?
In 2003, I was diagnosed with a rare liver disease that affected my lungs. It was caused by my Alpha Antitrypsin Deficiency, an inherited disorder. I was in both the prime of my life and career. It was devastating.
When were you placed on the transplant list?
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 2015. I received my transplant was on February 6, 2016.
Did you know you'd spend about three months in Vancouver post-transplant?
Yes, but I didn't know how I would manage it. My sources of income were limited - CPP- LTD (Canada Pension Plan-Long Term Disability) along with a private disability pension through my previous employer. I needed minimum $10,000 for post-transplant housing and living costs but didn't qualify for social assistance because I made about $100 more than welfare rates. Just $100 more. I was in a panic. It had a devastating effect on my health. The clinical social worker was a huge help. By threatening media involvement, Social Services finally approved my housing funding in Vancouver.
Once on 'the list' you can get ‘the call’ anytime. Without knowing when 'the call' would come, how did you plan?
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 and I couldn’t sustain life on one lung alone. I don't remember much, not even getting to the hospital. Somehow my specialist in Nanaimo kept me alive. I was brought out of my coma for brief periods to visit with my kids and was eventually taken to Vancouver, but there were no lungs available. One of my lungs collapsed again, so I was sent to VGH immediately. My family went with me as the situation was dire. I was stabilized in the ICU. My daughter and ex-wife stayed. 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 who knew us previously was kind enough to put my family up for a couple days. The waiting turned into several weeks and the Cancer Society, through the Jean C Barber Lodge, managed to put up my family 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 the transplant? My daughter had been waking me every so often to tell me to be strong and then boom, I was out again. It was my daughter who woke me up and 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!
Can you speak to some of the hardships you faced?
I went into the hospital in January 2016. After my transplant on February 6, I was sent to GF Strong in April for rehabilitation. I had no feeling below the waist so GF Strong taught me how to walk again. I was discharged and able to go back to my apartment in Vancouver in June 2016 and to finally head home to Nanaimo in July. So, hardships, there were many. Besides physical limitations, I was worried the money would run out. When my caregiver left after four and a half months I became very lonely. I was concerned about my ability to get back and forth from Nanaimo to VGH for check-ups. I also tried to visit my reservation as much as I could. That was very important to me, but because of the distance and gravel roads, the travel was difficult. Insecurity crept in. I was worried about something going wrong and how I would deal with it. I was still using a walker for mobility. My motivation was my kids and my grandchildren and the gift of life I had received. I never gave up.
How much did it cost you both to stay in Vancouver?
I figure it was close to $40,000. Between my cash and credit cards I had $8,500 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 GoFundMe 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 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 I will require temporary accommodation again. I’m so relieved that LT Housing Support is underway for those in need. That would alleviate a lot of problems.
What advice would you offer future lung transplant patients and caregivers?