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A life at risk, and nothing to do but wait: Bristol woman needs lung transplant

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Posted on February 5, 2015 |
By Zach Despart



Heffernans3913.jpg
SISTER KAITLIN, LEFT, and Megan Heffernan have lived with cystic fibrosis their entire lives and now Kaitlin needs new lungs. Family and friends are raising money to help cover the cost of treatments and recovery in Boston. Independent photo/Trent Campbell

BRISTOL — Kaitlin Heffernan, like many 25-year-olds, keeps her cell phone on her at all times. But it isn’t to text friends, check emails or browse the Internet.

At any moment, any hour of the day, the Bristol resident could get a call from Massachusetts General Hospital in Boston, telling her to leave immediately and prepare for a double lung transplant. She’ll have just three hours to prepare for a major surgery that could take 6 to 12 hours — and will likely save her life.

“I have a to-go bag,” Heffernan said. “That’s really all I can do.”

Heffernan has cystic fibrosis, a genetic disease that limits the functionality of many vital organs, including the kidneys, liver and pancreas. But it chiefly affects the lungs by producing mucus that is much thicker than normal, which makes the organs susceptible to infection and decreases respiratory function over time.

Kaitlin’s lung function has deteriorated to the point where she needs a new pair of lungs. It will require an expensive surgery and months of convalescing in Boston under the close supervision of doctors. To help with these enormous costs, Kaitlin and her family are raising money through a variety of means, and are asking their community for help.

About 30,000 people in the U.S. have CF. Based on warning signs doctors saw on an ultrasound, they were able to diagnose Kaitlin as soon as she was born. They then tested her older sister, Megan, then three years old, and determined both Heffernans had CF.

Both sisters, along with their father, John “Peeker” Heffernan, sat down with the Independent at their Plank Road home last week as the wind whipped the falling snow outside.

Kaitlin is skinny and tall, a head above her sister, and is quick to flash her radiant smile. She wheels around a tube of oxygen now, but her family said that doesn’t stop her from being out and about in the community, traveling to work and to see friends. Her passion for life is not something she will surrender to her disease.

Kaitlin and Megan never had the chance to have normal childhoods. Every day they underwent at least an hour of treatments. Then and now, they must eat enzyme pills with each meal because people with CF cannot produce the necessary compounds to digest food properly.

“I remember the pills with (what looked like) little beads in them,” Kaitlin recalled. “I had to eat them with applesauce when I was little, and that was just awful.”

LIFE PUT ON HOLD

As far back as she can remember, Kaitlin has wanted to be a veterinarian. After graduating from Mount Abraham Union High School in 2007, she earned a degree in animal sciences from the University of Vermont and then enrolled at the Royal Veterinary College in London.

But her deteriorating health forced her to abandon her studies, at least temporarily, and she flew back to Vermont in February 2014, during the middle of her semester.

It was only at this point in the interview that Kaitlin’s cheerful demeanor faded, just for a moment.

“It’s disappointing,” she said as she wiped tears from underneath her glasses. “It’s what I’ve always wanted to do.”

As heartbroken as she was to abandon her studies, Kaitlin said she believes it was the right decision. If she did not focus on her health, she would not be able to have a career as a vet. Her family supported her decision to come home.

“The alternative wasn’t good,” her father said. “She could have stayed there and got her education, and been in no condition to practice when she finished.”

Now, she is doing what she can to pursue her dream by working at the Bristol Animal Hospital.

“I may not be doing exactly what I want to do, but I’m still doing something I like just as much,” she said. “We’ll see what happens after the transplant.”

UNFORGIVING DISEASE

Cystic fibrosis is unforgiving — for every inch a patient gives, the disease takes and does not give back.

“It’s just an insidious disease that creeps up,” Kaitlin said.

With every sickness, even as slight as a cold, lung function in CF patients decreases.

“The issue becomes with every time that you get sick, there’s more scarring,” Megan explained. “You don’t come up as far as your baseline was, because there’s scarring and tissue damage.”

Prolonged illnesses can hasten that process. When Kaitlin came down with the respiratory illness that forced her return to the U.S. last February, her doctors first raised the issue of going on the lung transplant list. Lung transplant is the last treatment option for CF patients, but is often successful.

Kaitlin recovered but became very ill again in September and returned to the hospital for several weeks. That illness forced her to wear oxygen all day and night, and also sleep with a BiPAP machine, which forces air into her lungs.

Her father said that in order to get onto the transplant list, CF patients have to meet two criteria: the must be within two years of death or have a sudden, significant worsening of health.

By November, both of those things were true for Kaitlin, and in early December she officially went onto the transplant list. The list, as Kaitlin said many people imagine, is not a roll of names, each with a ranking. It’s much more complicated than that. That’s because a donor must match the recipient for a number of variables: mainly body size, blood type, tissue type. Those factors determine who is best to receive a pair of lungs, no matter where a patient may be on the transplant list.

“A lot of people ask ‘What number are you on the list?’ But it doesn’t really matter because it’s the donor that really has control of where you are,” Kaitlin explained. “If I’m number six, and a donor comes in and matches me, I’m going to get it before the person that’s number one.”

Double lung transplants have only been successfully performed since the 1980s, and because the body’s immune system naturally rejects foreign objects, doctors use immunosuppressive drugs to increase the likelihood that the body will accept a transplanted organ.

“The closer you are to a match, the better,” Kaitlin said.

Massachusetts General asks transplant patients to live within three hours of the hospital, as organs, unlike tissue, are only viable for several hours after being harvested.

By car, Bristol is about three hours and 45 minutes from Boston, though as any New Englander knows, traffic leading into the city is often congested. This means that doctors will call Kaitlin as soon as they may have a set of lungs for her — before they know if they will be a match.

“It’s possible she could get down there and they realize the lungs aren’t viable,” Peeker Heffernan said. “But we feel that’s a safe trade-off from having to relocate her.”

Kaitlin’s doctors say a false alarm actually isn’t a bad thing, as it can help relieve anxiety to have a practice run, so to speak (her father conceded that it would best serve his anxiety to do it on the first try).

For now, all Kaitlin can do is hope the call comes. But she said she tries to keep her mind off it and go about her life as she normally would.

“I think about what it’s going to be like when the call comes, but you can’t sit around waiting,” she said.

The Heffernans have planned out what will happen when the call comes down to the last detail — even who feeds the dogs when the family rushes to Boston. But until that day, Kaitlin will continue to enjoy her job at the animal hospital.

FAMILY SUPPORT

Peeker Heffernan said the most difficult part of having two daughters with CF is his — and doctors’ — inability to cure them.

“The hardest part for me is when you get these big blue eyes that look at you and say, ‘Dad, I just want to live a normal life,’” he said. “And you look back and say that’s simply not possible.”

There is no known cure for cystic fibrosis. Researchers have developed management plans for some strains of the disease that largely mitigate symptoms, but not yet for the kind both Kaitlin and Megan have.

So, since Kaitlin was an infant and Megan a toddler, they have undergone treatments every morning and night. Their father said that time — at least an hour a day where he and their mother, Valerie, had their undivided attention — strengthened their relationship.

“We talked about everything, which I think made us closer than a lot of people,” he said. “Believe it or not, there isn’t anything they won’t tell me.”

Megan said the sisters’ shared illness brought them closer, and said Kaitlin’s wavering health has been the most difficult thing she has ever endured.

“Kaitlin is someone I admire very much,” Megan said. “It’s hard to see anyone you love go through that, especially your younger sister. It worries me because I have no control over what happens to her.”

The older Heffernan, who has married and works for Rice High School in South Burlington, said that going to appointments with Kaitlin helped her understand what she may experience someday.

“Eventually I could go through it as well,” Megan said. “That makes it a little bit scary, I think it puts my mind at ease to see how easily she goes through it, to see how strong she is.”

FUNDRAISER

It’s difficult to put a price tag on Kaitlin’s care. Thankfully, the Heffernans have health insurance, which helps pay for her expensive treatment and medicines. But she will need help covering the cost of living in Boston after her surgery. In total, her father said the family hopes to raise between $100,000 and $150,000.

When she does recover, her expenses do not end. She will always have to take myriad immunosuppressive drugs so her body does not reject her new lungs. It’s impossible to project how her insurance or the cost of these drugs may change.

“The medical expenses are for the rest of her life,” Megan said. “It’s no different than CF, but it’s a little more involved in the amount of things she’s going to have to be responsible for.”

So far, Kaitlin has raised money in several different ways. Peeker Heffernan’s girlfriend and Kaitlin’s grandmother have been knitting hats and other items to sell at Mount Abe sporting events, Scentsations in downtown Bristol and at the Bristol Animal Hospital. Kaitlin will also host a benefit dance Feb. 21.

The family has set up a special account called “Lungs for Kaitlin” at the National Bank of Middlebury where people can donate. Kaitlin’s mother, Valerie, has also set up a fundraiser on the crowdfunding website gofundme.com. As of the end of last week, the campaign had raised $8,088 of its $25,000 goal.

Peeker Heffernan said the community has been immensely supportive, and recounted how just that day a benevolent neighbor gave him $500 in cash.

“They handed me this, and said this is for Kaitlin,” he said.

Kaitlin said she can’t find a satisfactory way to thank all the people — both friends and strangers — who have helped her.

“It’s like I’m in a ton of debt to everyone,” Kaitlin said. “It makes me feel good but at the same time I wish I could do something else for these people that are helping me.”

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