Bristol woman waiting for double lung transplant steps up activism
BRISTOL — A Bristol woman who has been awaiting a double-lung transplant for 16 months is embarking on a mission to spread awareness about a national shortage of organ donors by sharing her own story.
“I’m not a public person,” was the first thing that Tammy Shackett, 50, of Woodlands Drive said when she reached out to the Independent. But her own difficult experience while awaiting a transplant, along with the overwhelming support she found by meeting others in her situation online (as well as in the Addison County community), convinced her to tell her story in the hopes that it will help and inspire others.
“The (medical community) really wants people to get the word out, so people know what they need to do to be an organ donor,” Shackett added. “I didn’t know anything, either, until I started this whole process. You just don’t know.”
What Shackett — who has asthma, emphysema and bronchiectasis — has known since 2009 was that she needed a double-lung transplant.
“I’ve grown up with this, I’ve had it for 35 years,” she explained. “It just progressed to the time that my lungs are shot and it’s time for some new ones.”
She was put on the list to receive a lung transplant in April 2012. For the past 16 months, she has played the waiting game that thousands of Americans awaiting organ transplants must endure.
“I go down every four months for testing in Boston,” said Shackett, who also receives care through Fletcher Allen Health Care in Burlington.
Her tests must be performed regularly, every few months, so that the hospital has all of her relevant and current medical data at all times, because once a patient is put on a list, they can be called at any moment, as soon as a living organ donor dies, and asked to come to the hospital.
The effect on her life has been dramatic. She breathes extra oxygen through a tube almost all of the time, and though family pastimes used to include camping and travel, Shackett now must remain constantly on call in case an organ becomes available. Holidays are particularly stressful. Not only can she not travel, she is also conscious that most accidents happen over the holidays and finds herself constantly checking the phone.
Even when a patient receives that lifeline call, there are no guarantees.
“They call in two people at once, because one (organ) might fit one person better than the other one,” Shackett said.
The road to a transplant is often filled with starts and stops, and the occasional false hope. About a month ago Shackett was asked to undergo a procedure to determine whether she was eligible for a single-lung transplant instead of a double, which could have shortened her wait time.
The doctors ultimately concluded that she was ineligible. And though Shackett has suffered from lung disease for decades, she was unprepared for the transplant process.
“The whole transplant thing is so overwhelming, because they run you through every single test you can think of, and then some,” Shackett said. “And most of them you have to update every six months, every year. So you have to keep track of your calendar.”
Most organ donors volunteer when they receive their driver’s licenses at the Department of Motor Vehicles. But Shackett says that just registering yourself through your driver’s license is not enough. If rescue workers do not immediately locate a person’s license, the organs can become unsalvageable. There is an online registration process that is meant to minimize the risk of that loss, Shackett says.
The knowledge that that system, along with other concrete tactics to increase the number of American organ donors and successful organ transfers, is in existence and accessible if people knew to look for them is what is motivating Shackett to tell her story.
In the fall, she will speak to the driver’s education class at Mount Abraham Union High School, her alma mater, with her former teacher Jim Carter. She hopes to make speaking at schools, to students, a regular part of her outreach. She plans to also distribute pamphlets and fliers with information, which a local printer has offered to help her with.
Though the wait continues, Shackett knows that there is hope and life waiting on the other end.
“I had a friend from St. Albans who had a double lung transplant two years ago,” Shackett said. “And I watched him jump out of a plane (skydiving) last week in Addison.”
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