Wednesday, March 07, 2012

Heart Transplant Recipient Promotes Organ Donation at Farmer's Market

Yvette d'Entremont HalifaxNewsNet

'Scribbles for Sale campaign' encourages people to register as organ, tissue donors

Halifax, Nova Scotia - When Julie Lyons first decided to set up a table at the Seaport Farmers Market, the idea was to put her pen to paper for others.

"I wanted to do something meaningful for people, I love writing, and am always writing letters. I knew there were people who don't write letters anymore like I do," Lyons explained.

"A friend who was in Africa said there was always a scribe in the market..I decided I'd offer to write custom letters of any kind and to negotiate on price."

But ‘Scribbles for Sale' quickly morphed into a campaign to encourage others to put their pens to paper and register as organ and tissue donors.

The Halifax resident is the grateful recipient of a heart that has given her a new lease on life.

Her journey was a long one and began with an adult diagnosis of a congenital heart disease. A cardiologist told her she was born with a condition called hypertrophic cardiomyopathy. At the time, it didn't intrude in her life in any tangible way.

Lyons continued her physically demanding job as a flight attendant until 2004 when she couldn't shake a persistent flu. She took time off and a chest ray eventually showed a pulmonary embolism. Doctors told her it was time to call it quits.

Despite leaving the career she enjoyed, Lyons was fine for the next three or four years.

"Things started going downhill slowly. I did volunteer work and ballroom dancing for seven or eight years," she recalled. "I had to stop. I thought, oh well, that's the way it is, I have heart disease."

After a particularly bad winter in 2010, Lyons was very weak and tired. Medication wasn't working to clear the fluid building up inside of her and she was experiencing congestive heart failure.

"They did tests and told me the results are that there's nothing more we can do for you, you have to talk to a cardiologist," she recalled. "I was told we had to talk about other forms of treatment, we had to talk about a heart transplant."

Within four days Lyons couldn't even make it upstairs. In hospital, doctors said because medication wasn't working, her only other immediate option was an operation to fit an L-VAD (left ventricle assist device).

"They put the pump inside your heart chamber and it has to run all the time and weighs about 10 pounds," she said. "You have to regularly change the batteries and bring lots of extra batteries wherever you go."

In February of 2011, her heart's irregular rhythm caused her to black out.

Then in early April, she was chilled and felt very sick. Within days it became obvious she had a bad infection at the site of the L-VAD tube.

"I thought they'd say you need a new pump, but they said no, we can't because the whole area is infected. You need a new heart," she said.
She shot up to the number one spot on the waiting list in Canada, and on April 16 she underwent
a heart transplant.

"It went really well. As soon as I came through I felt so good, I felt it in my body and it was onwards and upwards," Lyons said. "By April 29 I was dressed and watching the Royal Wedding in the lounge."

Despite a few complications, by November she had her strength back. Lyons is now passionate about encouraging others to sign their organ and tissue donation cards.

She has donor cards ready and waiting at her table and also sells greeting cards featuring the work of local artists. All profits go to the Legacy of Life Foundation.

The reactions from people who stop at her Seaport Farmers Market table on Sundays range from silence to those who burst into tears and ask to hug her.

"It's important to fill my life with things that are meaningful to me. I've been given this life and it's important to do something with it," she said.

"My mother can call and ask what I'm doing and I'll say ‘Running upstairs.' She'll ask why, and I'll say ‘Because I can.'"

Lyons still hopes to pen a few letters as a market scribe, but is enjoying the opportunity to showcase the results of organ donation.

She's at the Seaport Farmer's Market on Sundays from 8 a.m. to 4 p.m.

"My problem now is slowing down. I want to take every minute and squeeze the life out of it," she said.

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”
Australia, register at Australian Organ Donor Register
New Zealand, register at Organ Donation New Zealand
South Africa,
United States,
United Kingdom, register at NHS Organ Donor Register
Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You.

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