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How pulmonary fibrosis patient Ken Douglas survived a double-lung transplant and got his life back

Lung transplant recipient Ken Douglas is seen here at his Ottawa home with his wife, Sally, and his sons, Lachlan and Jock.

dave chan The Globe and Mail

What does it take to vault a personal obstacle? This is part of a collection of stories in which five Canadians reflect on leaping over the barrier that was holding them back. Read the other stories here.

I was in the British army and served in the first Gulf War and they think more likely than not, that was the root cause [of my pulmonary fibrosis]. The onset was way back in '97. We'd just been on our honeymoon. I'd done a hill run while we were away, and really enjoyed it, and a few days later, I was walking up a hill and I was out of breath. That was the first sign.

[The fibrosis] started getting progressive three years ago. The majority of the lung tissue was scarred – dead. So by the time the transplant happened, I was down to about 20-per-cent lung capacity. Frankly, I think had I not been able to get the transplant, I would've been lucky to get through the winter.

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Sally, his wife: We were running out of time. Definitely.

K: It feels like you're doing everything at altitude. Having a shower, I'd have to sit down. Brushing my teeth, I'd have to sit down.

I'd always make the boys breakfast, and that would be a big chore. I'd crack an egg. Sit down. Catch my breath. Get up. That was the impact it had.

S: He is very stubborn so there was no saying to him, 'Maybe you shouldn't make breakfast any more.' He would've made breakfast until he just … until the eggs were being cooked on the floor.

K: I make a helluva good scrambled egg.

We were waiting for a transplant for almost two years.

S: For that two-year duration, you have a cellphone with you 24/7 and they can ring you any time of day or night.

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K: It's stressful. You can't relax. You have to have a suitcase ready.

I was still working. I work for the Public Health Agency and they set up a tele-work arrangement so I was working from home.

S: Kenny was utterly determined that we kept life as normal as possible, so the kids kept going to school, I kept going to work.

K: When it came time for the actual transplant [at Toronto General Hospital], I got the call in the morning as I was dropping the kids off at school. I went home and picked up Sally and got our stuff and drove down to Toronto [from Ottawa].

S: We got to the hospital about 3 o'clock in the afternoon. And then Kenny didn't go into surgery until early the following morning. It was a long wait, but he is one of the most entertaining people I've ever known in my life, so somehow we got through those hours, sitting in a corner laughing with one another.

Right up to the operation, Kenny would go for breakfast every Friday with four or five really great friends in the neighbourhood. And come hell or high water, they'd make this breakfast happen. On the day of the operation –

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K: Because it was a breakfast morning right? It was a Friday.

S: – those same men got together and sent me this photo with them holding a sign saying, "Go Kenny D," on it. He'd been in surgery for an hour. It was so lovely, and I wrote back, saying, "It would be really cool if we got everyone to do this, so that he wakes up to all these Go Kenny D photos." Well, oh my God. It went completely, completely nuts because he was unconscious for the next 16 days. This thing just grew, and grew and grew. We have over 600 photographs. The then-prime minister did it for us. The current prime minister, Trudeau, did it for us. Actors like Ewan McGregor did it for us. Our families all over the world did it for us. Kenny's a rugby fanatic –

K: New Zealand, the world champions, did it.

S: – Scotland did it. Honest to God, planet-wide, they were coming in. That support really carried me and it carried the boys.

K: Those were my first memories of waking up, just seeing all these pictures and working it all out. Your sleep has been disrupted, you're taking all this medication and you've gone through all this trauma. It really helped me concentrate and pull through.

S: One thing that's very intimidating was the amount of machinery he was connected to. But as soon as he woke up and got into the fight, we knew it was going to be okay. He got stronger every day and one piece of equipment would come off every other day, and we celebrated every single piece.

The biggest piece of equipment to come off would have been the air pipe.

K: Yes, the ventilator. That's breathing for you and you have to relearn how to do it. When it comes off, you're into uncharted territory because it's a bit [of] a leap of faith, like jumping without a parachute.

S: The ventilator comes off in stages. They try him with oxygen for half and hour and if that works, they try him for an hour. And he's got to have a straight 18 hours before they take him off, and even then they have to leave the pipe in for a while.

When they disconnected that pipe, he was very emotional because it was the first real sign that it had worked. He and I sat quietly and talked that evening, and it was like, "We've done this."

S: For us a real family moment is when we got home and the boys were just completely mesmerized by him. We came down one morning when Kenny was newly home and Kenny's rustling up breakfast, and he's not sitting down, he's not catching his breath, and he's singing and making everything happen in the kitchen.

The joy of all of this honestly is the simplest things – walking in the Gatineau on the weekends, or walking in the park, Kenny coming grocery shopping with me. All these things that you just take for granted.

K: A little while ago, I went for a run, a little jog in Gatineau. My son filmed me. It was 12 weeks after my transplant. It was the first jog I had done in 18 years. It wasn't very long. It was only a few meters.

I had been visualizing doing that for years. That's what kept me sane.

This interview has been condensed and edited.

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