Strength, resilience and Coca-Cola03/09/2021 04:05PM ● By Richard Gaw
By Richard L. Gaw
Before the reader of this article is introduced to its subject and her story, it is necessary to understand the condition that she has lived with all of her life, one that has come to take on the presence of a constant and immovable companion that can only be stilled by medication, daily rituals and hope.
Cystic Fibrosis, commonly known as CF, is an inherited, genetic disorder that causes severe damage to the lungs, digestive system and other organs in the body, such as the kidneys and the liver. It affects the cells that produce mucus, sweat and digestive juices. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections. Other signs and symptoms may include sinus infections, poor growth, fatty stool, clubbing of the fingers and toes, and infertility in most males.
The Irving Medical Center at Columbia University, where 28-year-old April Hansen visits for her frequent check-ups, is located at 168th Street in the Washington Heights section of Manhattan, three blocks from the apartment she shares with her long-time friend and roommate, Martha.
First diagnosed with CF when she was six weeks old by doctors in her native North Carolina, the course of Hansen’s life has been a sidetrack of interruptions that have navigated the full spectrum of medical offices, testing laboratories, men and women in lab coats and operating rooms.
For Hansen – who moved with her mother Nina and father Eric to New London in 2001 and graduated from Avon Grove High School in 2011 – the mornings she spends in her Manhattan apartment begin with a cocktail of three enzymes that allow her to digest her breakfast, followed by the consumption of ten additional pills, a sinus rinse and a peritoneal dialysis procedure she will perform on herself.
When evening arrives, Hansen will do another sinus rinse, another round of dialysis and swallow another 15 pills.
‘There is no such thing as normal’
“A lot of my strength and resilience has come from the challenges of Cystic Fibrosis,” she said. “As a teenager, I really wanted my condition to go away, so that I could just be normal. Now that I am a bit older, I have realized that there is no such thing as normal. Everyone has different challenges and they’re all different, but CF has greatly contributed to who I have become as a person, so to imagine myself without Cystic Fibrosis is hard, because I don’t know how I would have turned out.”
For the past several years, however, the strength and resilience that has kept her on a journey to keep moving forward has been met by another journey: In order for her to get off dialysis, Hansen needs to find someone who will donate a new kidney for her.
Remove the medications, the hospital visits and the at-home dialysis treatments, and Hansen’s life is an upward trajectory that began soon after she graduated from Meredith College in 2016. She began her professional career as a graphic designer for a New York City advertising agency, and lived in Brooklyn. Currently, she manages her online business The Trendy Little Geek, a fabric supply company that she founded in 2012, and since 2018, has worked at Trader Joe’s in the SoHo section of Manhattan.
“It’s part of April’s determination to live as normal a life as possible,” Nina said. “It has allowed her to graduate from college after receiving a double lung transplant. It’s allowed her to start her own business, moving to New York City, to work as a graphic designer for an advertising agency. She’s determined to keep up that productivity.”
Yet, as with nearly every CF patient, the complications from Hansen’s condition have required several surgeries that have stymied her forward progress. In 2013, when doctors told her that her CF had left her with a lung function capacity of 20 percent, she underwent a double lung transplant at the Duke University Medical Center.
In 2014, she had an operation to remove sinus polyps -- excess growths of scar-like tissue that block the nasal passages. While Hansen eventually recovered, doctors told her that her kidneys had grown weaker over time and demanded more medication just to keep functioning.
An up-and-down process
Over time, the complications have accelerated the urgent need to find a donor, which if found and accepted by Hansen’s body, would allow her to live dialysis free.
“Finding a kidney donor has really been an up-and down process,” said Nina, who maintains constant contact with her daughter and her doctors through ZOOM meetings and visits to Manhattan. “We knew she was in kidney failure before she needed dialysis, and her first real setback was having to go on in-center hemodialysis first.
“She had surgery to be able to progress to peritoneal dialysis, which has allowed her to perform dialysis at home, so she doesn’t have to go to a center for thee days a week for four hours at a time. It has allowed her to resume a bit of normalcy, but the long-term need is still there.”
Meanwhile, what began as a campaign to find a kidney donor through social media has evolved into Hansen and her friends plastering the telephone poles and bulletin boards in various Manhattan neighborhoods with posters, in search of a kidney donor. She has also begun her own website – www.aprilskidney.com -- to alert people to her cause.
Hansen looks forward to a trip that her father is planning for the family that will take them to France in 2022. While it is more than a year away, she imagines being able to board the plane free from the machinery of dialysis, and with the strength to walk city streets and the country’s terrain.
“At this point, I take everything one day at a time,” Hansen said. “It is overwhelming sometimes to know that I will need to do dialysis for the rest of my life, unless I find a kidney donor. But if I think of it more like, ‘I just have to do dialysis tonight,’ it becomes far less overwhelming.
“I think all of this has taught me so much, but more than anything what it has taught me is that everyone has their struggles. As my mother says, ‘If everyone threw their problems into a pile and you had to go pick one out, you’d be quick to pick yours back up.’”
In the months following her lung transplant, Hansen was not able to consume plain fluids for more than a month. When she was able to drink common beverages again, she vowed to allow herself one vice that she wouldn’t nag herself about.
“That vice has become Coca-Cola,” she said. “Every morning when I get up, I have that Coca-Cola and I enjoy it, so if I have gained any more wisdom about life through this journey, it’s to enjoy every Coca-Cola.”
To contact Staff Writer Richard L. Gaw, email [email protected].