No more false alarms for double lung transplant recipient Jill Lane.
Photo: Maggie Riopelle
WELLAND — For eight years, Jill Lane spent her life attached to an oxygen tank, gasping for air, weakening as the days crept by.
After 10 false alarms over a donor being available, Lane was starting to wonder whether she would ever get the double lung transplant she needed. Especially when the call came in the middle of the night just one week later — again, a possible donor.
“It’s difficult on you, psychologically,” said Lane. “I got on the list in March of 2005 and was on it for two and a half years.”
This time when she got the call, Lane didn’t even bother packing her bags when she left her Welland home for Toronto. Her daughter, who was about to leave on a two-week vacation, instead also made the trip to Toronto with her mother and father.
This time, however, it was no false alarm, Lane was prepped for surgery and 10 hours later had two new lungs.
“It’s like a blur,” said the 68 year-old mother of three. “All of a sudden, that was it. It seems you always get things when you least expect them.”
Lane was born with a genetic disorder known as Alpha-1, which results in low levels or no levels of protein in the blood.
It was a condition she had all her life, but her doctors didn’t even know of the disorder until the 60s. So while she exhibited the symptoms, Lane didn’t get diagnosed until 2000 — up until that point, she thought she had asthma and emphysema. She was also susceptible to lung infections and pneumonia.
“It was a bit of a shock that I had a terminal incurable genetic disease,” she said.
Shortly after her diagnosis, Lane was put on oxygen 24 hours a day, seven days a week. While the oxygen was a necessary step, Lane said it took away much of her independence and created many fears.
She could no longer garden, play golf or play with her grandchildren. She worried every time she left the house that her destination might include a flight of stairs. She couldn’t drive her car and worried her oxygen tank would freeze up and leave her breathless and alone.
“It’s heavenly not dragging around the chord ... sometimes I go to blow my nose and I go to move it. It was so much a part of me, you know,” she said, adding that while the oxygen tank prolonged her life, it definitely didn’t make living much easier.
“I tried to get out as much as possible. It’s hard to get out when you’re on oxygen, you’re so weak. There must be loads of people on oxygen who don’t get out.”
Lane said the double lung transplant is “freedom,” a true “miracle” in that now she hardly recalls life with an oxygen tank and its chords.
Worry is now a thing of the past.
“I was always worried about stairs, now I just go out. I used to always worry about parking close enough ... people on oxygen have to worry all the time.”
While Lane was ill, she just couldn’t let go of her golf clubs. Now if the weather would co-operate, she looks forward to going out on the green. This spring, she also decided to go “hog wild” on her neglected garden. She can play ball with her grandchildren.
It’s been a year since the surgery and while Lane is still on about 20 pills a day, her anti-rejection medications are being lowered and overall, she feels quite healthy. The hardest part during this whole process, she said, was the wait for the transplant. She did, however, make a lot of friends who were also on the transplant list, some didn’t make it, others are doing very well.
“I’m really not complaining. A lot of people don’t make it. People on the list, waiting for lungs, are very ill. I was 110 pounds, gasping for air. I have almost forgotten what it was like. It’s a miracle, it’s amazing.”
While there is no cure for Alpha-1, Lane said the disease takes so many years to wreak havac on the lungs, it shouldn’t been an issue for the rest of her life. As far as every knows, she is the only family member with the disorder although her children are carriers of Alpha-1.
Lane said she now celebrates two birthdays — the day she was born and the day of her transplant, July 3. She celebrated the first anniversary of her transplant with a few other lung transplant recipients she has met along the way including Don Roy and Darryl Burdon of St. Catharines and Doug Summerhayes of St. Anns.
While Lane was never one to think a lot about signing a donor card — she now recognizes the importance of giving the gift of life to others.
“It’s only because of some family’s generosity that I was able to survive,” she said. “I was able to send a card to the family, thanking them for their sacrifice in their time of sorrow, for deciding to do that. It’s totally anonymous. I’ll never know who my donor was and that’s fine with me.”
According to the Trillium Gift of Life Network, one organ and tissue donor can save up to eight lives and enhance as many as 75 more.
People can register their consent to donation online at www.giftoflife.on.ca. As well, when people register for or renew a health card in Ontario, they can also register consent to donate organs and tissue and the information is stored in a Ministry of Health and Long-Term Care database and passed on to Trillium Gift of Life Network.
On the site, the transplant wait list includes 294 waiting for a liver, 1,201 for a kidney, 48 for a lung, and 44 for heart transplants. In total, there are 1,607 n the transplant wait list in Ontario.
Lane said she is supportive of any changes to the laws that helps increase the number of organ and tissue donors in the province — including presumed consent unless people specify that they do not want to donate.
“I think 98% of people would,” she said, adding that in discussions with others about organ donations, most would be willing.
It’s important, she said, to get the information out there and having been a transplant recipient and survivor, Lane never lets an opportunity pass by to inform people about the importance of organ donation.
“Don’t forget to sign your donor cards, we know that’s what saved our lives,” said Lane.
“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”
Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network. NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here
In Great Britain, register at NHS Organ Donor Register
In Australia, register at Australian Organ Donor Register
Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people 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.