This is a story about right now.
It’s about how, even as a better future seems finally within Andi Swenson’s grasp, she cannot see it, because her past has taught her to keep the shades shut on what’s ahead.
It’s about this instant, on this Wednesday, as Swenson, 22, sits in her Harvard living room and connects through a tube her antibiotics – held in what looks like a balloon stuck in a baby’s bottle – to a port implanted three years ago above her right breast.
It’s about living with cystic fibrosis, the disease that slowly steals Swenson’s lungs, yet puts a dire emphasis on every shallow breath.
• • •
“We figure it’s been about three years now since the word ‘transplant’ came up in conversation,” said Lea Swenson, Andi’s mother.
They’re discussing the surgery now.
In some days or weeks or months, if all goes as planned, Andi Swenson will get a call, and on the other end someone will say that two lungs and a liver await her.
Swenson’s lungs operate at 20 percent of their capacity, and finally her name appears poised to find its way onto a list to receive a double-lung and liver transplant.
When she was just 10 months old, doctors told her parents – Lea and her husband, Eric – that their daughter had cystic fibrosis, a disease that affects about 30,000 people nationwide, according to the Cystic Fibrosis Foundation. The bodies of those with CF produce a thick, sticky mucus that clogs the organs and acts as a hotbed for infection.
Growing up, Andi was able to stay active, but the symptoms piled up over time.
“Pulmonary-wise, she did really well,” Lea Swenson said. “You would never know anything was wrong with her.”
• • •
The disease caused other problems in Andi Swenson’s early years. Enzymes needed for digestion were blocked from entering her stomach, making it hard for her to gain weight. And then there’s the diabetes and cirrhosis of the liver.
She was 13 when her lungs started giving her trouble.
But now the painful pulmonary symptoms have fully arrived. It often feels, she said, as if an elephant is sitting on her chest. The pain occurs in a cycle – at its worst, she gets admitted to the hospital for about a week of therapy, where physicians take measures to loosen and discard the excess mucus.
She gets started on antibiotics to kill the infection, and by the time she leaves the hospital, she’s feeling her best. But then the mucus starts building up, her chest getting heavier, bacteria growing, until Andi Swenson is not only sick and feverish, but struggling to breathe.
“It sucks,” she said, flashing a quick smile. At 18, with her lungs around 55 percent capacity, Andi Swenson suddenly found herself in the hospital about every three months. Today, it’s more like every six weeks.
“I knew mentally, in my head, why,” she said. “But it still was not computing because I was so used to only once a year.”
• • •
Swenson knows all the stories. She’s had friends with cystic fibrosis – friends she met on Facebook – who got the call and got their organs, only to die within a couple of years.
More than 80 percent of CF patients receiving lung transplants are alive a year later, and more than 50 percent are alive five years later, according to the Cystic Fibrosis Foundation.
There are success stories: The family read about a man whose new lungs are functioning at more than 100 percent capacity, propelling him to marathons and a new life.
“It’s probably not forever, and she knows that,” Lea Swenson said. “But her quality of life right now basically is nothing. She sleeps late in the morning, she gets up, she eats, she does her breathing treatments and takes her medications and eats some more.”
When the Swensons get the call, Andi and Lea will board a jet to Cleveland, Ohio, to a special clinic. In the aftermath, after Andi is released, the two will stay in the area while Andi sees a doctor first daily, then weekly, until she’s released back to Harvard.
Seeking a transplant was Andi Swenson’s own decision, and she saw it as the only choice. She is 22. She wants to be able to breathe.
• • •
Finally those lungs and liver feel close.
“It’s just about to happen,” Eric Swenson said. “I think. Yeah, it’s just about to happen.”
Does his daughter agree?
“I hope it is,” Andi Swenson said, pausing briefly. “I don’t know. I can’t really think past today.”
They’ve developed a family motto, and mother, father and daughter have tattooed it onto their skin. In old English lettering, on Andi’s ankle, and Lea’s wrist, and Eric’s hand, it reads: Breathe On.
So Andi Swenson is here, taking her 25 to 30 pills a day, connecting the odd little antibiotics container to the device under her chest.
This illness is a full-time job. Andi Swenson lives breath by shallow breath.
How to help
The Swensons have developed several fundraisers to help cover the costs associated with Andi’s illness and transplant. Individuals can donate or learn about fundraisers at www.cotaforandis.com.
The family has also scheduled a “Breathe On Andi” 5K Walk/Run and an accompanying “Andi Swenson Benefit.”
If you go:
Andi Swenson 5K and benefit
What: 5K walk and run starting at 8 a.m., with a children’s fun run, bean bag tournament, bingo and pull tab, antique car show, bake sale, dunk tank, face painting, cookout and music throughout the day
Where: CashSavers, 1299 S. Division St., Harvard
When: 8 a.m. to 4 p.m. Aug. 24
To sign up for the 5K: Visit CashSavers in advance or the morning of the event.
Information: Call 815-273-4511, visit www.cotaforandis.com or facebook.com/BreatheOnAndi.