EDMONTON – One deep breath in, one deep breath out. It seems simple enough for most people, but when you’re born with cystic fibrosis, this is the fight of your life.
“Taking a breath with CF would be like a force. You would really have to think about it,” said Jillian Langen, who is staying at the University of Alberta Hospital following a double lung transplant.
“It wasn’t just an automatic response, like breathing should be. You’re really focusing on getting enough air in, and enough air out.”
While out celebrating New Year’s Eve, Langen’s lung collapsed. She was rushed to a Saskatoon emergency room and the message was clear: she needed help now. She was airlifted to Edmonton on Feb. 6. At that point, Langen was functioning on five per cent lung function and barely able to form a sentence.
“There were times where it felt like, ‘how much longer can I keep going on like this?’ Those were some dark days,” said Langen.
“I will say that once I got to the University of Alberta Hospital, I felt safe. They have a team of people working together, and it’s just to save your life.”
Without a new set of lungs, Langen’s prognosis was bleak. It was a matter of life or death. With her family by her side, the waiting process began.
“We switched into a totally different mode, and this team carries us through the process of whether we would be a donor family or a recipient family,” said Paige Anderson, Langen’s mom. “We decided she would do nothing but breathe, breathe into those machines, and everything else would be taken care of.”
And, it was. Only weeks after being put on the organ donation list, Langen got the news so many in Canada are waiting for.
“The moment itself was so much different than I had imagined it, because you sit here and you think you’re going to be waiting weeks, months, or even years for these lungs,” said Langen. “Then someone comes into your room and says they have an offer for lungs.”
“I just started to cry. I was so overwhelmed with emotion.”
“That moment was so special, but it was also sad too, because I knew someone had passed away. You don’t know how to feel. You’re overjoyed and also sad — sad for that family and what they’re going through.”
It’s been seven weeks since that fateful day and Langen continues to recover in Edmonton. She hasn’t seen home since her collapse in December, and works daily on her fitness level, monitoring her pulmonary function and checking in with her transplant team at the hospital.
Every step of the way, she thinks about the stranger that allows her to live on.
“If I could speak to the family directly just I would say ‘I’m so sorry for your loss, but it has impacted so many lives,'” said Langen.
“My son is now going to have a mom. It’s really amazing what organ donation can do.”
It takes a concerted effort from the transplant team to make this happen. Dr. Justin Weinkauf says Langen’s recovery has been nothing short of incredible. Of course, not everyone is this lucky in Canada. With 65 people waiting for new lungs just at the University of Alberta Hospital, there just aren’t enough donors to go around.
“In Canada, we list people and then transplant them based on how sick they are, so medical emergency is the main indication. The sicker someone is, the faster we need to transplant them. It’s not based on wait time on the list,” explained Weinkauf.
“I always think if some good can come out of some person’s tragedy, then that may help the family cope going forward with the death of their loved one. Dr. Lien in our program always says ‘Don’t take your organs to heaven, heaven knows we need them here on earth.'”
And here on earth, it’s the family that makes the ultimate decision. It’s a conversation nobody wants to have, but one that can make all the difference to someone like Langen.
“I had Jack quite young. I was 20, and then I didn’t really know what I wanted to do with my life … there was always this expiry date,” said Langen. “I didn’t know what to pursue and now I feel like I can finally start my life. It’s a totally new beginning and I can do whatever I want.”
WATCH BELOW: Talking to your family about organ donations
In the end, it all comes down to one special question for Langen and all those waiting for their second chance.
“I would just say that if you can save a life, why wouldn’t you?”
For a more in-depth look at Langen’s journey, tune into Focus Saskatchewan Saturday and Sunday at 6:30 p.m. CT.