Archive for May, 2013

September 20-22, 2013 – National PH Conference

The Pulmonary Hypertension Association of Canada is pleased to invite you to the
3rd National Pulmonary Hypertension Conference


September 20-22, 2013
Delta Ottawa City Centre Hotel (101 Lyon Street, Ottawa, ON)

Keeping the PHlame of Hope Alive is the theme for PHA Canada’s 3rd National PH Conference. Every two years, PHA Canada hosts a conference to gather patients, friends, family, and supporters in one city to discuss issues facing the PH community and to share experiences. The Canadian PH community reunites and looks at ways to move forward with PH. Conference participants engage with topics ranging from the basics of PH, to updates on the latest developments in PH diagnosis and treatment. This year, conference sessions will also focus on the day-to-day challenges of living with PH and will include discussions about coping with this rare chronic disease as well as opportunities to get involved in the fight against PH.

Keeping the PHlame of Hope Alive is significant because we believe that the passion, dedication and spirit of the PH community in the fight against PH helps tend the figurative PHlame of hope. It so happens that Ottawa, the conference host city is home to the Centennial Flame. A flame that was lit by Lester B. Pearson on January 1, 1967 in commemoration of Canada’s 100 years of confederation.  The Centennial Flame is not eternal; however it celebrates confederation, which could be considered the coming together of peoples and institutions to create a unified voice.

The figurative PHlame being tended by the Canadian PH community is an energy that is as real as any physical manifestation thereof. The PHlame is embodied in the work of volunteers, the care provided by PH medical professionals, the words shared by our PHenomenal Youth, the funds raised and donated by dedicated contributors, the art created to inspire the PH community and the activities organized to celebrate PH patient achievements. Each act is by itself is like the flame of a candle, and when these acts come together we are witness to a great shining PHlame of hope that burns within the PH community.

For more info and to register:

Adam Kingz fondest hope: two more lungs and another 13 years

He’s Sick Kids’ longest-living lung transplant survivor. But now the organs that allowed him to grow up and become a dad are failing.

By: Joanna Frketich | Sat Apr 27 2013

Adam Kingz will become a dad in September, but he’s counting on the kindness of strangers to keep him alive to see his child.

Kingz is the longest-living lung transplant survivor from Toronto’s Hospital for Sick Children. Just as his life has hit a new peak, the lungs he received 13 years ago have worn out.

So the 27-year-old Beamsville man is staking his life on the generosity of a family he will never meet.

He needs a risky second transplant to have any hope of living long enough to raise his son. The boy will be named Abel, which means “Breath.”

“I’m not ready to give up,” he said. “I’m going to live like I have 50 years left. I’ve always been like that.”

That determination, hope and optimism, doctors say, is what helped Adam beat the odds.

Only 30 to 40 per cent of lung transplant recipients are still alive 10 to 15 years after their surgery.

“It helps when someone has a fighting spirit and a positive outlook,” said Dr. Shaf Keshavjee, director of Toronto’s lung transplant program at Toronto General Hospital and Sick Kids. “We’ll do our best for him.”

Kingz laughed while everyone around him cried as he was wheeled into the operating room on Aug. 23, 1999. At 14, he became only the third child to receive a lung transplant at Sick Kids.

The previously healthy teen received a shock when he passed out one day in gym class. That led to the devastating diagnosis of primary pulmonary hypertension — a rare blood vessel disorder of the lungs that puts so much stress on the heart it eventually fails.

He was told on Oct. 23, 1998, that he needed a double lung transplant to survive.

It was painful déjà vu when he was told on Oct. 24, 2012 that his lungs were failing again and he would die without a second transplant.

“I was angry and upset that it’s happening, now that I’m happy and everything is going well,” said Kingz. “A second transplant is dangerous.”

Only three to four per cent of lung transplants done at Toronto General are for a second time.

First-time patients have a 2 to 3 per cent chance of dying on the operating table. That more than triples, to 5 to 10 per cent, the second time around.

Rejection is also more likely.

“It’s a little bit worse,” Keshavjee said of the risks. “But he’s young. He’s got a chance.”

Transplanted lungs can last as long as 25 years. But five to 10 years is average, so Kingz has long known he’s living on borrowed time.

The problem is the transplanted lungs don’t heal as well, so over time they become abnormal. The body’s constant fight to reject donor lungs eventually damages them.

Kingz is now down to 20 per cent lung function, from the 80 to 90 per cent he had after the transplant. He has a chronic cough and tires easily.

“It’s like his battle is starting all over again,” said his mom, Arlene Vandervelde. “Will he get the lungs on time? Will they be available when he needs it? Will he be as lucky this time? Will it go as well?”

She remembers all too well that first wait for lungs — 10 months to the day he went on the list. And the gratitude to the family of a young girl, whose name, by law in Ontario, they will never be allowed to know.

Kingz has now lived with that little girl’s lungs almost as long as he had his own.

“I got 13 years – a lifetime of stuff,” he says. “If I can get another 13 years, what I could accomplish would be astounding.”

What’s astounding for Kingz is what most people think of as routine — like getting his 4-year-old stepdaughter, Emmalynn, ready for school.

“It’s the everyday stuff I enjoy,” he said. “I like getting up and making my kid’s lunch, which is annoying to most people, but I sit back and think about how I get to do that. When I was sick, who would have thought I’d get to be this person?”

After the first transplant, Kingz dared to hope he’d get married one day.

“It sounds girly, but I’ve always wanted a dream wedding, because I never thought I’d have that,” he said right before he married his high school sweetheart on Sept. 12, 2009.

The marriage lasted two years before the couple grew apart and went their separate ways.

Never one to give up, Kingz built up the courage to reconnect with childhood friend Ashley Moody. A year and a half later, they are expecting a baby boy, due Sept. 6.

Kingz already considers himself a dad to Emmalynn.

“I have a daughter, and a son on the way — it’s perfect,” said Kingz. “I want them to know their dad is strong.”

“And a fighter,” adds Moody.

“My biggest dream is to be a grandpa,” Kingz said. “I’ve always wanted to be an old man.”