Local woman’s life depends on double-lung transplant

Matt
Matt Gardner
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Always a concern among doctors, the availability of organ transplants is a pressing matter of life and death for one Prince Albert family.

Local resident Karen Pilon, 48, was diagnosed with pulmonary fibrosis last September and is currently on life support in an Edmonton hospital, as her family anxiously awaits a donor for the double-lung transplant necessary to save her life.

“That’s all we've got -- waiting and praying,” her husband Clarence said in a phone interview. “That’s all we have.

“We’ve just got to hope that the medical team can keep her around long enough until lungs get here. That’s their goal and that’s our goal.”

A proud mother, grandmother and avid Prince Albert Raiders fan who worked at the local Co-op grocery store prior to her diagnosis, Karen’s selfless nature has been a distinguishing characteristic throughout her life.

“Everything was about everybody else. It wasn’t about her,” Clarence said.

“Whether it be grandchildren, her family or friends or whatever, she was just that type of person that everything was about other people, not about her.”

He described her two grandchildren, aged seven and nine, as “the joy of her life.”

Pulmonary fibrosis is a chronic disease that causes swelling and scarring of the alveoli (air sacs) and tissue between cells in the lungs.

Karen’s diagnosis came a mere decade after her father died from the same disease.

In that case, her father’s pulmonary fibrosis took two years to reach the stage that Karen is at now. By the time physicians attempted to transport her father to Edmonton, he was too weak to make the journey -- a fact Karen impressed upon her husband following her own diagnosis.

“From day one, all she’s ever said to me was, ‘Make sure I get to Edmonton. Give me a chance,’” Clarence said.

Further complicating matters is the difficulty of finding the specific organ transplant Karen requires.

Demand for lung transplants far exceeds the supply, with 4,500 people currently waiting for lungs in Canada. Typical wait times can last up to two years.

“Lungs are the most difficult organs to receive because (if) somebody gets in a car accident, chances are your lungs are going to be shot from impact,” Clarence noted. “There are so many different things with diseases -- a lot of lungs aren’t able to be used because somebody had a disease that’s incurable or whatever.

“They’re such a big part of your body … Now with hearts, they have artificial hearts they can put in people until they get their transplant,” he added. “They just don’t have that option with lungs.”

Except for her lungs, Karen’s body functions remain in good condition since she was transported to the Edmonton hospital from Saskatoon late last month and put on life support with the help of a blood oxygenator.

Given how quickly her health deteriorated prior to hospitalization, Karen’s doctors have been surprised by her resilience, with her condition stabilizing over the last 10 days.

“She hasn’t communicated since the 25th of February, other than when they lighten her sedation enough that they can talk to her,” Clarence said.

“She’ll squeeze fingers and move her feet and move her eyes and that type of thing, or other times … you could see where she’s trying to talk, but nothing will come out because she’s got a tracheal (intubation).”

A lot of people have this misconception that they have to register as an organ donor before their organs can be donated, and that’s just not true. Clarence Pilon

Despite her stabilized condition, Karen’s need for a transplant remains urgent.

“We need lungs and we need them, like the doctors always say, sooner better than later,” Clarence said. “But we’re going to keep struggling along here.”

Since Karen’s arrival in Edmonton, not a single lung has been offered for transplant at the hospital.

As her family awaits a donor, Clarence has brought Karen’s story to the public, speaking to the media in an effort to raise awareness of the general need for organ donations.

He pointed out that each individual is capable of saving eight people if they were to donate all of their organs.

“A lot of people have this misconception that they have to register as an organ donor before their organs can be donated, and that’s just not true,” Clarence said.

“Everybody’s organs can be donated. All you have to … really do is make sure that your family knows about it, so that when you do pass on … they’re the ones that are going to make that decision. It’s not going to be anybody else.”

By pre-registering to become organ donors or telling one’s family about their wishes, he added, doctors would avoid the awkwardness that might discourage them from asking a mourning family whether they might be able to use the badly needed organs of their deceased loved one.

“That’s where a lot of organs get missed because doctors just aren’t comfortable, I would think … going to go to approach a family after somebody has passed on to ask them for the organs because they need them in a different part of the country.”

Underlining the desperate need for more organ donors, doctors at the hospital have expressed their gratitude to Clarence for going public with the family’s story.

Family support has been crucial to Karen’s loved ones in recent weeks, with many relatives making regular trips to Edmonton.

“We’ve been actually managing quite well actually … other than the fact that we’re frustrated that we can’t get a lung,” Clarence said. “But other than that we’re doing pretty good.”

While hoping to find lungs for his wife, Clarence said that in speaking to the media, he wished to help people understand that becoming organ donor is not as difficult as they might assume.

“It doesn’t have to be a big thing about trying to give your organs away,” he said. “It just has to take a 10-minute conversation with your family to let them know where you stand -- and I don’t mean just spouses and children.

“Tell your in-laws, tell your parents, tell everybody that you think that you care about. Tell them, because you don’t know if you and your spouse might perish in a car accident together and now nobody knows what you guys want.

“Tell as many people as you can,” he urged. “That’s my biggest thing.”

Information on how to donate organs through the Saskatchewan Transplant Program is available at www.isanorgandonor.com.

Organizations: Edmonton hospital

Geographic location: Edmonton, Canada, Saskatoon

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  • IPF Today
    March 22, 2014 - 13:03

    More information about pulmonary fibrosis on the websites of IPF Today - www.ipftoday.com -Canadian Pulmonary Fibrosis Foundation - http://www.canadianpulmonaryfibrosis.ca/- Pulmonary Fibrosis Foundation - www.pulmonaryfibrosis.org