Helene Campbell speaks & dances after double lung transplant

“Shall we dance?”

They’re three words double lung transplant recipient Helene Campbell wouldn’t have been able to act on months ago, but her miraculous recovery from a prodigious procedure allowed her to demonstrate a funny dance move she learned in Spain a year ago before she fell ill.

The 21-year-old Ottawa native spoke out for the first time Thursday after receiving two new lungs during transplant surgery on April 6 at Toronto General Hospital — she also performed her aforementioned “signature move.”  

“Look at me now,” a beaming Campbell told the audience gathered to hear about her remarkable progress.

Campbell was diagnosed with advanced idiopathic pulmonary fibrosis last October. She spoke at the news conference at Toronto General alongside her parents and the doctors who gave her back her life.

“I have a voice and I’m able to breathe and to me that is a miracle,” Campbell said after marvelling at the fact she can now take a shower standing up — just one of the small activities in everyday life she’s learned not to take for granted anymore. She takes 54 medications every day to prevent infection and rejection.

After tackling life’s simple tasks after surgery, including walking up less than a dozen stairs, talking while walking and regaining some of her independence, Campbell plans to return to school.

“Organ donation advocacy is something I plan on doing for the rest of my life,” she said.

“I have a perfect set of lungs and an amazing story to tell.”

That story is what generated tremendous interest in organ donation. Her vibrant personality and social media savvy gained the attention of Twitter titan Justin Bieber and talk show host Ellen DeGeneres. Campbell said Bieber’s grandparents check in on her progress and Ellen’s crew has kept in touch regularly and she plans to perform her “signature move” on the show once she’s cleared to fly.

On Wednesday Prime Minister Stephen Harper and his wife Laureen presented her with a Diamond Jubilee medal for her organ donor awareness efforts.

While much of the focus has been on her incredible progress, Campbell’s focus has been on other people and ensuring other those waiting for life-saving organs can one day share their good news story.

She said she had that in mind when she named her website (A Lung Story) and created her Twitter handle (@alungstory) so she could pass them off to another person waiting for a donor.

Campbell’s father, Alan Campbell, said his daughter’s social media strategy drew international support and the “amazing momentum continues.” He said because of his daughter, the number of people signing up to become donors has increased not only in Ontario, but in other regions, including Australia and Louisiana.

Campbell’s mother, Manon, tearfully recounted her daughter’s journey.

“Helene is committed to getting better … she’s motivated,” she said.

The new lungs will reach their maximum capacity six months after surgery. For the next few months, she’ll be monitored closely with X-rays, blood tests and bronchoscopies, her doctors say.

“Her story is a unique one in … what she had to go through and the medical miracles that we managed to pull off were one after the other,” Dr. Shaf Keshavjee, director of the Toronto lung transplant program for the University Health Network, said.

Campbell said she’ll remain ever thankful to the donor and their family. She’s named her new set of lungs “gratitude.”

“I will honour that gift as long as I live.”