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Tuesday, June 11, 2013
Double lung transplant gives Willmar, Minn., native 'a second chance at life'
When I read Pam Lehn's story it was as if she was talking about my lung transplant at Toronto General Hospital.
Like her, I suffered from Idiopathic Pulmonary Fibrosis (IPF) and experienced the same symptoms and transplant process. She kept a wonderful blog hungry-for-air.org during her diagnosis and treatment that I encourage you to read.
Pam Lehn, is a Minnesota native now living in Toronto .
WILLMAR -- Pam Lehn and Scott Dyer talked it over and decided that when the time came, it would be Dyer who broke the news.
On Feb. 3, Dyer blogged the words they waited months to write:
This morning at 1 a.m., the nurse awakened Pam with the news we have been waiting for: a set of donor lungs was available for transplant.
A long surgery and recovery lay ahead but it was the couple's best -- and only -- hope for keeping Lehn alive.
Four months later, they're still awed at how much has changed since Lehn, 56, received the double lung transplant at Toronto General Hospital in Toronto, Ontario.
"Just standing and doing the dishes, it's like 'wow,'" Lehn said. "It gives you a second chance at life. Really, it gave me my life back."
Said Dyer: "Since the transplant, every day is better than the one before. It's truly remarkable."
One of Lehn's goals during a mid-May trip to Willmar, where she grew up and where some of her family, including her 91-year-old father, Lloyd Lehn, still live: walking the path down to the lakeshore at the couple's vacation home on Games Lake.
"I have this wonderful place to look forward to when I can breathe again and enjoy all the riches," she wrote last September on her blog, Hungry for Air, that chronicles her months-long fight with pulmonary fibrosis (hungry-for-air.org).
The first hint of the struggle ahead surfaced in the summer of 2008 when Lehn and Dyer traveled to Tibet while visiting China during the Summer Olympics. Everyone in the group felt the effects of the altitude "but Pam could never catch her breath," Dyer recalled. "She was red-faced and blue-lipped and laboring all the time. That's when we started to think something was wrong."
Back home in Toronto, where they have lived for several years and work in film animation, Lehn's lung capacity continued to worsen.
I was having difficulty moving around with heavy coats and boots. Dressing to take the dogs out, I had shortness of breath. Every day when I went to work I had to climb a spiral staircase, every morning I was at my desk catching my breath.
One year, several imaging tests and a lung biopsy later, Lehn and Dyer got the news. Lehn had idiopathic pulmonary fibrosis, a form of lung disease leading to progressive scarring of the lungs and progressive deterioration in the ability to breathe.
About 128,000 new cases of IPF are diagnosed annually in the United States. The cause of the disease is unknown.
Lehn and Dyer turned to the Internet for information, and what they found was bleak: There is no cure for IPF and few effective treatments, other than a lung transplant.
"That's when we realized just how truly serious this was," Dyer said.
There was one piece of good news: Toronto General Hospital had an organ transplant program with a worldwide reputation for success -- and it was close to home besides.
Sept. 8, 2012:
I was slowly starting to lose steam over the summer and by mid-August my family showed concern that I was having a much more difficult time doing the simpler things like standing, cooking, walking from room to room, even brushing my teeth ...
I called my doctor this Tuesday to say I couldn't walk without being short of breath. They swung into action, had me go in for tests, agreed that the disease had further advanced from July and we completed the forms and as of Friday, September 7th, 2012, I am listed for a lung transplant.
By winter her condition was deteriorating alarmingly. She couldn't walk without oxygen. Her day narrowed to one task at a time: Get dressed, then rest; brush her teeth, rest again.
"As Pam got more ill, literally the only thing she focused on was staying alive," Dyer said. "By the final week in January, it was so severe and her oxygen needs were so high, I realized we could no longer take care of her at home."
Patients can wait anywhere from six months to two years until a donor match is found. As many as 20 percent die before a matching lung or pair of lungs becomes available for transplant. Lehn was so sick that she was placed at the top of the waiting list. She ended up waiting five months to receive new lungs.
Feb. 5, 2013
As I write this, Pam has been out of surgery for a mere 48 hours. Yet she is sitting on a chair in front of me. There is no ventilator. She is breathing on her own. Tomorrow she will walk.
Through the fall and winter, the blog became one of the ways for Lehn and Dyer to stay in touch with a wide circle of family, friends and coworkers. New entries often generated a response within hours.
When Dyer read the comments aloud to her after her surgery, it was "so healing," Lehn said. "That was the nicest thing -- those words of encouragement."
The couple doesn't know anything about the donor, other than that it was likely a younger individual from the Toronto area. When the time is right, they plan to write a letter that will be forwarded to the family.
Lehn said she's giving long and careful thought to what she will say. "It's very generous of them because they're in their darkest grieving hours and they have to let go," she said.
The joy they feel will always be offset by the knowledge of someone else's pain, Dyer said.
"There's very few good things that come out of a loved one passing away," he said. "Being an organ donor is a way to find a meaningful legacy in what is otherwise a horrible, horrible event. It's important that you make that decision to become a donor and talk to your family about it."
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