I love all the K’s – meet Kyle, Kaylan, Karter and Kade 🙂 This beautiful young family has 2 boys diagnosed with cystic fibrosis, Karter and Kade. Unfortunately, their younger son Kade, has had many many hospital stays and a much rougher time with his illness than his older brother Karter. Being available for both boys while running back and forth to the hospital, doctor visits, lab checkups, hotels, gas, etc. has put them in a very difficult financial situation. As we have said before, many CF families decide that at least one family member must stay home to care for the child while the other becomes the breadwinner. But, what if that just doesn’t cover the bills plus all the extra care needed to make sure your children are covered by insurance and all of their daily needs are met? This brings us to a situation where both parents must work and still try to juggle everything on their own. Sounds impossible, right? Well, we agree! We are so grateful that we were able to be a small bridge for this family while enduring another extended stay for young Kade. Their mother writes “Receiving this grant was an amazing blessing for our family. Between our 2 CF kids, I have had to miss 12 days of work just in the last month. Missing those 12 days means that I don’t get paid because I am out of leave time. This grant allowed the bills to get paid and we didn’t have to stress while helping our children. That helps ease a parents heart so much! Again, we are so very thankful for this grant.” Big love to all of you who have recently started following us or joined our mailing list and donated. You are the reason we are able to help families like this, to know that they are cared for by a large community and that they don’t have to do this all alone.
What an incredible honor ~ Thank you Glamour Magazine for recognizing our Founder Claire Wineland as your Glamour College Women of the Year Grand Prize Winner! The $10,000 grant will help Claire continue her efforts to support her cystic fibrosis community by providing financial and emotional support to those living with this disease and their families. Read on to find out more about these amazing and inspiring 2018 winners!
Meet Glamour’s 2018 College Women of the Year
BY JESSICA MILITARE
JUNE 4, 2018 8:00 AM
What were you doing in college? Trying to solve hunger? Researching the effects of the 2010 BP oil spill? Trying to rewrite the narrative around revenge porn? I know I wasn’t doing any of that. But I know a few people under 23 who are.
I’ve worked on Glamour’s College Women of the Year competition for three years—in which for over six decades we’ve honored students across the country making a difference on their campuses and beyond. Alums of CWOTY, as we call it, have gone on to become renowned businesswomen (ahem, Martha Stewart, class of 1961), championship-winning athletes, and elected officials. But what’s amazing about these students is that they don’t wait for anyone to give them permission to make change; they’re getting things done now, and on their terms. You might think that with each passing year, I’d feel more depressed about what I haven’t yet accomplished compared with these trailblazers. But really, I feel unbelievably hopeful and excited knowing that the future is in their hands.
This year’s class of winners is no different. Read their inspiring stories ahead and what motivates them to keep going.
PHOTO: ANNA ZHANG
Amanda Gorman, 20, Harvard University
TV was limited in the Gorman household, so Amanda and her twin sister got creative: She started writing poetry at age eight, and they’d put on musicals to entertain themselves. “I was an artist and a creator from a young age because I had to be,” Gorman says. But at school kids pointed out that Gorman talked and sounded different because of her speech impediment. “I just told them I was born this way,” she says. “Now experiencing that type of discrimination makes me take pride in having a marginalized voice.”
Today the sociology major is the first-ever Youth Poet Laureate of the U.S. and has read her work at the Library of Congress and on MTV (Hillary Clinton and actress Cynthia Erivo are fans). Her poem “In This Place (An American Lyric)” was acquired by the Morgan Library and Museum in New York City, where it’s on display alongside works by Elizabeth Bishop. Take that, haters.
Inbetween touring the country to read her poetry (one of her recent gigs was performing a poem at an event honoring Lin-Manuel Miranda and Dick Van Dyke at L.A.’s Geffen Playhouse), she runs One Pen One Page, her literary organization that provides free creative resources from students in America and around the world. No pressure, but Gorman also wants to run for president one day.
“It’s not that I want to run; it’s that I’m going to run,” she says. “Seeing the ways that I as a young black woman can inspire people is something I want to continue in politics. I don’t want to just speak works; I want to turn them into realities and actions.”
PHOTO: BRANDON Y LEE
Ann Makosinski, 20, University of British Columbia
Ann Makosinski was inventing from a young age: She’d piece together garbage with hot glue, and play with transistors. She’d devour biographies about science icons like Marie Curie and Albert Einstein. “I even renamed myself Andini, after Harry Houdini,” she says, after she read a book about the famous magician in the fifth grade. She actually prefers to go by that name. “His performance style inspired me when I started presenting at science fairs,” she says.
That same curiosity carried into her teens: When she was 15, Makosinski learned that a friend in the Philippines failed a grade because she didn’t have electricity to keep the lights on to study. So she invented a flashlight that runs on the heat of the human hand, no batteries needed. It uses thermoelectric generators—otherwise known as Peltier tiles—to work with body heat to produce light. She won the Google Science Fair in her category for that invention and is now aiming to bring her idea to market through her own company, Makotronics Enterprises. Meanwhile, she keeps dreaming up other ideas like her eDrink prototype, which converts excess heat from coffee into electricity to charge a cell phone. Makosinski travels the world speaking to kids about electronics and is hell-bent on redefining what an inventor looks like.
“The portrait of an inventor in the media is usually a guy hunched over tinkering in a big fancy lab,” she says. “I’m not that. I want kids and young girls to see me and think, Hey, if someone just like me made something, maybe I can make something too.”
PHOTO: LUCY HEWETT; MAKEUP: JENNA BALTES
Bushra Amiwala, 20, DePaul University
After the 2016 presidential inauguration, Bushra Amiwala, who interned for Illinois Republican Senator Mark Kirk was invited to speak to a class of first through third-graders at a Muslim education center about getting involved in politics. She asked them: “How many of you want to run for president one day?”
“All of them raised their hands,” she says. “But when I followed up with: ‘How many of you think you can run for president one day?’ all of their hands dropped. I realized that if I ran, these are the students I’d be impacting. They’d see my candidacy and be like, ‘I can also run.'”
Amiwala realized that all of the issues she wanted to work on in her hometown of Skokie, Illinois—hunger, homelessness, education—could be tackled at the local level. So last year she built a team of 250 volunteers and became the first Muslim American woman and youngest person ever to run for a commissioner seat on the Cook County Board, against the male incumbent. She lost in March but registered more than 2,000 people to vote, and 30 percent of her votes came from people who voted for the first time. “My campaign was more than just getting elected,” she says. “It was a movement of people who’ve been neglected in politics banding together to push back.” Now she’s starting an organization to help minorities run for office. Her message to women running in the midterms?
“You can do this,” she says. “You’re going to have hundreds of people tell you that you can’t, but you’ll also have thousands of people tell you that you can, just not as loud. The support is there, you just have to find it. Believe in yourself first.”
PHOTO: LARISSA PEROUX
Claire Wineland, 21, Santa Monica College
Claire Wineland has a ritual every time she checks in to the hospital room she’s occupied on and off since she was four: She rearranges the furniture and plasters the walls in butcher paper. Sometimes she paints bricks to make the room look like a loft.
Wineland has cystic fibrosis, a genetic disease that produces an overload of mucus in the body and affects most of her organs. It’s hard work just to stay alive: She does five hours of breathing treatments a day and takes nearly 50 medications. Her life expectancy is her midtwenties, and she’s now 21.
“You’re on this constant stop-start where you start living your life and then you have to get plucked out of it and go to the hospital for a few weeks, which makes it hard to have anything that’s grounded,” Wineland says.
Two days after her thirteenth birthday, Wineland had a near-death experience: After a routine surgery she got a blood infection and her lungs collapsed. For nearly six hours she was awake while dying. “I got this feeling of grief; I was sad for all of the things that I could have done and the person I could have become,” she says.
Wineland was put in a medically induced coma for three weeks, and after coming out of it, she had a huge support system around her. But she noticed many other sick kids and their families didn’t have as much help. She started Claire’s Place, a foundation to support people with CF and their families, including covering costly medical bills, rent, or breathing equipment. To date she’s aided more than 100 people with CF. And on YouTube she challenges stereotypes about terminal illness (see her millions-viewed videos “What It’s Like to Be in a Coma,” and “Dying 101”). She was recently approved for a lung transplant, a crucial surgery for young adults with her disease.
“Everything I’m proud of comes from some of the darkest things in my life,” Wineland says. “My purpose is to help more people feel comfortable with their pain and realize that they have a lot of power and a lot to give regardless of whether their life seems normal or not.”
PHOTO: KELIEE YU
Keiana Cavé, 20, University of Michigan
After the 2010 BP oil spill, Keiana Cavé, then 16 years old and living in New Orleans, noticed something missing from the news coverage around the environmental disaster. “I remember googling, ‘What’s happening between the UV rays from the sun and the oil sitting on top of the ocean? What’s actually going into the sea water?'” she says. “Nothing came up.”
Cavé ended up contacting 30 professors at area colleges about her desire to research the spill. One at Tulane University answered, and Cavé dived into working there. Her research revealed that cancer-causing molecules had developed in the water less than 12 hours after the spill. The accolades followed: She won second place in the earth and environmental sciences category at the Intel International Science and Engineering Fair. And after winning first place at MIT’s Global Entrepreneurship Bootcamp, Chevron caught on to her work; they gave her a $1.2 million grant to start a lab at U of M, where she’s developing an oil dispersant to detect and neutralize toxic agents.
The Forbes 30 Under 30 for Energy recipient would like to solve other problems too: the global water crisis, for one. She wants to serve as CEO for a major energy company, and empower other women in STEM. “I want to be a fixer, like the Olivia Pope of science,” she says. “If anyone has a major issue, I want to find solutions for it.”
PHOTO: CHLOE CICCONE
Leah Juliett, 21, Western Connecticut State University
At 15, Leah Juliett had just come out as a lesbian when a boy at their high school posted nude photos of Juliett on the Internet. “I was coming to terms with my sexuality, and then I saw all of the things I wanted to accomplish disintegrate around me,” Juliett says. They fell into a deep depression and pattern of self-harm, but after healing and sharing their story at poetry slams, they wanted to prevent a similar experience from happening to others.
Juliett went on to start the March Against Revenge Porn, a cyber civil rights campaign that advocates for Internet safety, especially for LGBTQ people, federal lobbying, and cyber sex education. They are currently working on legislation in Connecticut that would make revenge porn a more punishable crime.
Last year Juliett held the March Against Revenge Porn in Brooklyn. A few months later New York State voted in successfully criminalizing revenge porn. “Our efforts put revenge porn on the minds of legislators and made a difference,” Juliett says. This year Juliett has more marches planned: In Boston and Pittsburgh this month, and one at the University of Hawaii in October.
This month Juliett, who came out as nonbinary in college and uses they/them/their pronouns, founded the National LGBTQ+ Youth Town Hall, a grassroots political mobilization campaign event for voting-age queer and trans youth to interact with politicians. And they’re sharpening their political chops, having interned for Senator Chris Murphy and Congresswoman Elizabeth Esty. Says Juliett: “I want to be the first nonbinary senator of the United States.”
PHOTO: AP PHOTO/RICHARD DREW
Simone Askew, 21, United States Military Academy
Simone Askew went to Army-Navy football games as a kid in Virginia with her mom and sister and was fascinated by the cadets leading in formation. Her favorite part was when the midshipmen would march onto the field at the beginning of the game. “It sparked an interest in the discipline and the order of those march-ons,” she says.
As a teen, Askew was eager to go to the Academy; she even missed getting crowned homecoming queen to attend a West Point recruiting event. As a student there she’s made history: Last year Askew was chosen as the first African American woman to serve as First Captain of the U.S. Military Academy’s Corps of Cadets, the highest-ranking student post, overseeing 4,400 students. As a survivor of sexual assault, one of her missions as First Captain has been changing the approach to assault and prevention at West Point.
“I’ve pushed our education toward showing cadets what respectful relationships and behavior looks like, not just [telling cadets] don’t assault and don’t harass people,” she says.
Askew graduated in May, but next on her very impressive agenda: Attending Oxford University in the fall as a Rhodes Scholar where she’ll study refugee and forced migration. Later she wants to enter the Army’s Corps of Engineers.
“I want to serve as long as the army will have me,” she says, “and lead with a purpose and lead honorably wherever I am.”
PHOTO: DOUG DUBOIS
Zahra Arabzada, 22, Hobart and William Smith Colleges
When Zahra Arabzada was growing up in Taliban-ruled Afghanistan, girls weren’t allowed to play sports. But her parents sent her to school, and when she was 10, she got the chance to run her first three-kilometer race in another province; she ran it in flip-flops. “At the end of the race, I said, ‘I’m never doing this again.’ I was so sore,” she says.
Through hard work Arabazada got accepted to the first female boarding school in Afghanistan and later landed a scholarship to a Rhode Island boarding school. It was there that she fell in love with cross-country, but was wary to run because no one else looked like her. Arabzada changed her mind when she went back to Afghanistan and was explaining the foreign concept of running to her mother. “It seemed like she wished that she could have this escape and I recognized my privilege,” Arabzada says. “How I dress shouldn’t stop me, because my mom would die to have this opportunity.”
She put herself all in: Arabzada’s now tackled three half-marathons, one trail marathon, and a 50-mile ultra-marathon, all chronicled on her blog, The Hijabi Runner. There she writes about what it’s like to fast and train, and about her life back in Afghanistan. She also mentors a running team there through Free to Run, an organization that uses sports to empower women and girls in conflict-affected regions. Her goal?
“I hope my story helps another Muslim woman to go for even a one-kilometer run.”
PHOTO: ESLAH ATTAR; HAIR AND MAKEUP: VICTORIA STILES
Maria Rose Belding, 22, American University
Volunteering in food pantries her whole life, Maria Rose Belding, who has diabetes, saw processed food available but very few fruits and vegetables. “One time we got a donation of 10,000 boxes of macaroni and cheese,” she says. “We were making phone call after phone call and sending emails to try to find a place that could take this extra food. I remember saying, ‘We have the Internet—why haven’t we solved this?’” Then she noticed local restaurants and markets throwing away healthy perishables.
So at 15 she launched MEANS (Matching Excess and Need for Stability) Database, a nonprofit and communication platform that alerts food banks and pantries when food that would have been tossed is available. To date, MEANS has recovered and distributed over 1.7 million pounds of food and is active in 49 states. Puerto Rico is next on their list. Belding keeps the stories of MEANS’ partners close to her heart: the food pantry they serve that operates without running water; the elderly woman who runs a pantry out of her church. What does she want to say to anyone who doubts her ability to help solve hunger?
“Come to work with me and I’ll show you otherwise,” Belding says. “There’s so much astronomical need that, realistically, we’re not going to make food insecurity disappear. But that doesn’t mean we can’t move the ball down the field.”
PHOTO: JOEY ROULETTE
Karen Caudillo, 22, University of Central Florida
Karen Caudillo remembers the salsa-music parties her Mexican father threw in Florida, where she grew up. But when she watches home videos now, she can count who’s been deported.
“[It was] moms, dads, grandparents, sisters, brothers, boyfriends, girlfriends,” she recalls. “Right now it’s a time for people to come out of the shadows. All we want is to be treated equally and with respect and dignity.”
“Even to this day I’m scared of my phone dying because sometimes I think it might be my mom or my dad, detained for no reason,” she says. That’s why she’s out there fighting for her family and for others: The DACA recipient and activist fasted outside the U.S. Capitol last year for four days with United We Dream, trying to get lawmakers to pass a DREAM Act; a C-SPAN video of press interviewing her afterward got 11.8 million views. Now Caudillo is working to pass legislation as a student senator to make UCF safer for other Dreamers, while also advocating for farm worker and immigrant rights in Florida.
“Hopefully, we see a DREAM Act passed sooner than later,” she says. “We’re still living in limbo, but we’re still actively fighting, and one day we will see a pathway to citizenship for the 11 million undocumented folks living in the U.S.”
Read what the Glamour 2018 College Women of the Year think about activism, the Me Too movement, and the pressure to achieve.
Hi everyone! So, this August 18th was going to be the date of our 4th Annual Glow Ride for CF in beautiful Hermosa Beach but we have had a huge change in plans. Our founder, Claire Wineland, has been listed for a life saving double lung transplant at UCSD and from what the doctors say, we could get the call at any minute.
As a very small organization, we simply do not have the emotional and physical bandwidth to put this event together while we focus on our upcoming transplant. We hope you all understand ♥ We have made the hard decision to change our glow ride from an in person event to an on line fundraiser so that we don’t leave the families that look to us for assistance “in the dark”.
The money we raise each year at our glow ride is a large piece of our yearly budget and Claire is committed to continuing her foundation, even in her absence. One fantastic thing to keep in mind is that 100% of any donation will go directly to our Extended Hospital Stay Fund since we will have 0 overhead in producing this event.
If you are inspired to support our Inner Glow Ride sponsored by Vertex Pharmaceuticals, please consider any one of these options:
1. Create a team on the Crowdrise page HERE and encourage your friends and family to help you get your inner glow on for children and families living with cystic fibrosis by donating to your team. The team that raises the most money will win our prestigious “Milky Way Award” and will be announced on August 20, 2018. This award will include either a personalized video message from Claire that you can share on social media or the option of having her record your voice mail message on your cell phone. We will also include CLAIRITY Tshirts to your entire team.
2. Donate as an individual to the Crowdrise page and help us reach our goal of $15,000. The individual that donates the most money will win our “Shining Star Award” and will also have the option of receiving a video from Claire or having her record your voice mail message on your phone, and a CLAIRITY Tshirt.
3. Donate anonymously to the Crowdrise page but share our campaign far and wide. Sharing campaigns on your social media channels and via email with your friends and family has been proven to bring in 3x the donations. So, please share away!
4. Make a donation to the Crowdrise page and “Get your inner glow on”. Please send us a picture all lit up at night to be posted on our event page and social media channels. We would LOVE to see you participate from afar either as an individual or with your group. All pictures welcome 🙂 Best group picture will be sent our custom CLAIRITY tshirts as a thank you gift for participating.
ALL donations and pictures are due by August 18th and awards will be posted on August 20th 🙂
So, as we prepare for Claire’s big surgery and a new chance at life, we are envisioning her being able to ride in her glow ride next summer with a brand new set of lungs. How cool would that be? We would love for you to participate in person again next year to help us celebrate.
We truly apologize for the last minute change in plans but being on the waitlist for lungs is so unpredictable. We look forward to seeing you all again next year! For those of you who already purchased a ticket, I will be reaching out to you privately with a few options.
Welcome New Member ~ David Gersholowitz, MBA, Board Director
David Gersholowitz,MBA, Director
Dave is originally from Cape Town, South Africa, but has never been on a safari or in a single gold mine. Rather, after a few attempts, his family moved to the US to pursue the American Dream. Cue “Out Of Africa” Theme…
Dave entered the veterinary field in 2005 when he joined BluePearl Veterinary Partners to launch a large practice in NYC. Working with an amazing team of doctors and staff, Dave grew the NY Region into one of the largest Specialty and Emergency practices in the country. In 2011, Dave transitioned into the COO role for BluePearl and was instrumental in BluePearl’s growth to over 60 locations in 20 states. Then Mars came knocking…
In early 2017, Dave joined Andy Loar, Dave Gardiner and Everett Smith to pursue the next great thing, which is of course veterinary diagnostics. The four musketeers came together to create ZNLabs Veterinary Diagnostics with a simple goal – revolutionize the veterinary laboratory field. We’re working on it! 😊
Dave is married and lives with his wife and two children, Adam and Nadia, in sunny Tampa, Florida. They share their place with their three dogs, Ollie, Fiona, and Kenny. In his spare time, Dave enjoys travel, driving manual cars and looking for deals. Dave earned a BS in Electrical Engineering from USF and an MBA from UCLA Anderson School of Management.
Dave reached out to Claire’s Place Foundation after reading a CNN article about Claire’s Place Founder Claire Wineland’s journey with cystic fibrosis. “We all face challenges in life and I am a strong believer that we each have a choice in how we respond to these challenges,” said Dave. “Claire’s amazing positive outlook on life and desire to help others despite her own challenges is truly inspiring. I was also impressed with the hyper-efficient, entrepreneurial nature of Claire’s Place Foundation. I knew I had to find a way to get involved. I am also excited for anything that brings me back for a visit to beautiful Southern California!”
“In addition to being a smart and driven entrepreneur, Dave is a compassionate, creative, giving and energetic individual. The moment the board met him, we knew we would be lucky to have him,” said Claire’s Place Foundation Executive Director Melissa Yeager. “Dave’s experience and business development skills are a huge asset to the foundation. He has already contributed to the foundation with his creativity, contacts and insight. He is continually thinking of new ways he can help. We are absolutely thrilled to have Dave join our board of directors.”
Are you one of the many young adults or children living with cystic fibrosis and have begun the painful decline that this disease can sometimes bring about? Our Founder, Claire Wineland, has recently done much soul searching and has decided to try for a double lung transplant. For many years, she was adamantly opposed to it until her world became so small due to her quick decline. We would like to thank Jessica Ravitz, a wonderful, warm and loving writer with CNN for following our journey through this process. We hope that it helps those of you trying to make this very difficult decision.
Claire Wineland vowed that she wouldn’t have a lung transplant, but her decline from cystic fibrosis made her reconsider.
Why a terminally ill young woman has changed her mind about living
By Jessica Ravitz, CNN
Photographs by Monica Almeida for CNN
La Jolla, California (CNN)To face each day, Claire Wineland undergoes hours of breathing treatments. It’s a reality of living with cystic fibrosis she’s come to accept.
But last month, as the nebulizer hummed loudly in her La Jolla, California, hotel room, she breathed in medicine through her mask and hoped this day would be the first step toward something different.
She’d traveled from Los Angeles with her mother, her best friend and her pit bull, Daisy, who flopped down on the floor atop one of Claire’s ever-present oxygen tubes. A full day of appointments at a nearby medical center awaited her, when she would begin the evaluation process to see whether she might be a candidate for a double-lung transplant.
A year earlier, Claire vowed that she’d never have the major surgery.
“It’s not for me and never has been,” she said at the time.
She was more comfortable dealing with the illness she knew than taking on the unknown. She preferred to focus on leading a purposeful life than worrying about death and how to dodge it.
A series of irreversible setbacks and some painful soul-searching, however, have prompted an about-face in her thinking. Claire, 21, needs new lungs, or she will die — sooner than she’s willing to accept.
The only question is: Did her change of heart come too late?
It wasn’t as if the clouds parted and she suddenly saw the light. Claire’s new outlook was the result of a messy and humbling self-reckoning.
She had long managed to push through physical discomfort to lead a life that mattered. After emerging from a 16-day medically induced coma at age 13, she envisioned the Claire’s Place Foundation, which today provides financial support to struggling families affected by cystic fibrosis. She appeared in brutally honest viral videos in which she talked about topics like death and did it with a smile. Since she was 14, she had been taking to stages and wowing audiences with beyond-her-years wisdom. Along the way, she nurtured a love of travel.
She was wrapping up a three-city tour last fall when pneumonia landed her in a Philadelphia hospital for two weeks.
Doctors there sat her down and told Claire she had to stop flying. Period. They told her that her lungs could collapse and that she ran the risk of dropping dead on a plane, she said. They warned that it would be painful and laid out what it would feel like if an air pocket in her lungs burst.
“You will feel like you’re being stabbed to death … and then blood will stop flowing to your brain,” she remembered them saying. “And I was like, ‘OK, I got the message! Copy that!’ “
She took a three-day train ride home and began to settle down.
Cystic fibrosis affects more than 30,000 people in the United States (and more than 70,000 worldwide), according to the Cystic Fibrosis Foundation. The disease causes an overabundance of mucus, which traps infections and blocks airways in the lungs, complicates digestion, affects the pancreas and other organs and, eventually, leads to respiratory failure.
Read: Living while dying: ‘Little Buddha’ wisdom from a terminally ill ‘goofball’
The median survival age is about 40, according to the foundation — a great improvement from the 1950s, when surviving long enough to attend elementary school was rare.
Claire became uber-diligent with her care. She was on top of her dozens of medications, including her shots for cystic fibrosis-related diabetes, endured as best she could the feeding tube at night, even though it made her throw up, and spent extra time with her breathing treatments. For four hours daily, she said, she wore a vest to shake her lungs and loosen mucus. She also tried supplements like turmeric and found comfort in the nettle infusions she drank throughout the day.
But even with all of this, her lung function continued to decline. In one year, she said her working lung capacity fell 10 points — from 35% to 25%. Short walks and visits to the beach left this lover of the outdoors exhausted. Simple grocery shopping became too tough to manage. She had no energy for local speaking engagements and lost her income flow. She felt homebound, trapped and unable to do what mattered to her most.
CFers, as she refers to people with cystic fibrosis, often talk about “the Wheelchair Decision” with dread, Claire said. But when breathing and getting around became too difficult and she got hers in February, it initially felt “like freedom.”
With her best friend, Larissa, taking on the role of “designated wheeler,” the duo could tool around outside. The day she got the wheelchair, they went on a seven-hour adventure around Los Angeles’ Venice Beach, where Claire lives, visiting the canals, going to the park, soaking in the ocean breeze.
And while most of the time, she has no qualms about needing a wheelchair, there are accessibility issues, the sidewalks are a mess, and she can’t be pushed through sand. Inevitably, she’s had those moments when she thinks, “It sucks that I need this. It’s painful that it’s gotten this far.”
Claire breathes in medicine through a nebulizer as Larissa pounds her back with cupped hands to help loosen mucus in her airways.
Then Claire, who’s undergone more than 30 surgeries and been in the hospital a quarter of her life, received another jolt during a March hospital stay. Medical staff discovered that her portacath wasn’t working. The small dome under the skin of her chest provides a central line into a vein, allowing easy administration of IV treatments — such as antibiotics, which she must take regularly to beat back constant infections. A portacath replacement means surgery, and Claire’s pulmonary function was — and remains — at a level too dangerous for her to go under anesthesia.
Though the portacath was fixable, Claire didn’t know it would be at the time. A wave of terror washed over her. She fell apart and realized it was time to take the transplant idea seriously.
“I can’t go under anesthesia. I can’t fly. I can’t do anything,” she remembered feeling with a panic. “I have completely locked myself in a position of not being able to do anything besides die.”
Ready for the race
After leaving the La Jolla hotel, Claire was wheeled into the Center for Transplantation at UC San Diego Health, prepared to meet with members of the lung transplant team.
She’d eaten a McDonald’s McGriddle sandwich the day before — a secret she employs to put on an extra pound or two before weigh-ins — just in case they asked her and her 95-pound frame to step on a scale. She was armed with questions and a notepad, ready to studiously record all she’d learn. Since she’d been here less than two years earlier and decided against pursuing the transplant path then, she was eager to tell them why this time was different.
A nurse who serves as the lung transplant coordinator, Megan Serletti, spent several hours educating Claire, her mom and Larissa about the process.
They talked about the battery of tests that would determine whether she would qualify to get on the waiting list, some of which Claire knew well and described as “gnarly.” They discussed the lung allocation score, the number Claire will get if she’s approved that measures how sick she is and determines where she sits on the priority list.
They discussed what life on a waitlist looks like: the necessity that she stay within a four-hour drive of the center, the importance of not ignoring phone calls, the exercise she’d need to grow stronger and the multitude of blood draws and exams she’d have on her schedule.
“We call a transplant your marathon,” Serletti said. “We tell people to train for your marathon. The day you get called is the day of the race.”
There were forms to sign and questions she’d need to consider. For example, would she be willing to accept lungs from a prostitute?
“I’m fine if a donor had sex in exchange for money,” Claire quipped. “Way to bring the hustle.”
How about from someone who was an IV drug user and contracted hepatitis C, a condition that is treatable?
“Honestly, I’d just laugh if I got new lungs and caught something else,” she said. “I already have the body of someone who’s been around the block.”
Serletti spoke of the realities after surgery, including the drugs Claire would need to take for the rest of her life, the physical and emotional challenges she might face, the changes in lifestyle she’d have to honor.
Claire wrote everything down. She curled her legs into the chair, revealing the tattoo on her left ankle: the thumbs-up “Don’t Panic” logo from “The Hitchhiker’s Guide to the Galaxy.”
“None of it spooked me,” Claire said afterward, over lunch in the transplantation center’s courtyard. “Now that I’m looking at it as something I have to do, I don’t care about any of the side effects. I’m willing to deal with anything.”
‘We both just started crying’
To qualify for new lungs, a person must be sick enough to need a transplant yet strong enough to withstand the surgery and recovery.
There were 1,436 candidates for lung transplants as of April 20, according to the United Network for Organ Sharing, which manages the nation’s organ waiting lists. Of those, 122 had a primary diagnosis of cystic fibrosis. Last year, of the total 2,449 lung transplants performed, CFers accounted for nearly 11% of the recipients.
A lung transplant is not a cure, but it can extend a life, if all goes well.
Of those who received lung transplants (not just CFers), dating to 2000, an average of 84% survived after one year, nearly 54% survived five years, and slightly more than 30% survived 10 years or more, according to the organ sharing network’s data.
Deciding to go for a lung transplant, let alone a double-lung transplant (the only option for CFers), is no small matter.
Claire first visited a transplantation center at UCLA when she was 14 but said that was too early for the idea to make sense for her. At 17, she checked out the program at Stanford University but was turned down, her mom explained, because they could tell that Claire wasn’t interested. She checked out the option again, at the very place she had returned to now, when she was 19.
While her peers were being tasked with picking out prom dresses or decorating dorm rooms, she was being asked to contemplate her mortality.
She prayed that she’d want it as much as she knew her parents and doctors did, but her heart wasn’t in it, she said. She was still happy with what she had and, as an adult, able to make her own decisions.
Her parents, who split up when Claire was 3, struggled to make peace with her choice.
“Just think of it as insurance, even if you don’t want to do it,” her mother, Melissa Nordquist Yeager, pleaded at first. “Get on the list so you can change your mind.”
But ever since she’d been a small child, Claire had a sense of self, an understanding of her condition and a sort of intuition Yeager needed to trust — even if it made her uncomfortable.
Her dad, John Wineland, said Claire “has a relationship with her body that is sacred” and described his daughter’s thinking: “This is the body I came in with. This is the body I’m going out with.”
And as her parent, he said, “I have to live with it.”
To see her struggle and deteriorate over the past year was both sobering and excruciating for them. So when Claire broke down and said she’d changed her mind, they were thrilled, excited and terrified.
“I was blown away, so grateful, happy and hopeful. It was a sign that she wasn’t willing to give up,” remembered Yeager, who was with Claire at the hospital in March and heard the news first.
“I called her dad, and we both just started crying,” Yeager said.
“I’m just praying my ass off, really, that everything goes smoothly, that she can get a shot at more time on the planet,” Claire’s dad said. “There are a lot of hoops she has to jump through to be accepted.”
‘Are you ready?’
It’s not uncommon for CFers to change their minds about transplant, social worker Leslie Fijolek assured Claire.
Fijolek, who serves on the transplant team, remembered Claire from the last time she visited UC San Diego Health. Fijolek’s job is to think about “who are these [new] lungs going to live with,” she said, get a sense of the care system recipients have in place and provide support to make the process successful for everyone involved.
Is Claire compliant in taking her medications? Is she prepared to relocate near the transplantation center, where she’ll need to be for at least three months after the transplant if she gets one? Who’d move with her and drive her to appointments?
“How’s your mood been? Any depression and anxiety?” Fijolek asked.
Claire mentioned how her decline, starting last fall, threw her into a depression. They talked about how she’d lost the ability to manage her physical decline, how she’d like to find a therapist who works with patients facing chronic illness, how she turns to arts and crafts projects to get out of bed — and out of her head — on rough days.
Photos on a cell phone are passed around, showing the papier-mache tree she’s been working on and how the bark and surrounding foliage are remarkably true to life.
Fijolek turned serious, locked eyes with Claire and said what everyone in the room already understood: “You know you need a transplant.”
“I was so young. I was so naïve,” Claire answered, describing where she was before. “All the side effects used to scare the shit out of me. My relationship to transplant and all it entails has changed.”
Fijolek, who was all too familiar with Claire’s past ambivalence, pushed her further.
“Let’s say you got listed in about two weeks; it means you can get a call at any time,” she said. “Are you ready?”
Claire assured her she is.
“It’s a big change from where you were,” the social worker said.
“I didn’t want to waste anyone’s time,” Claire answered.
Her mother sat by, fanning herself with a medical brochure, listened and wiped a tear from her eye.
All she had
The last appointment of the day was with one of the transplant team’s pulmonologists.
Dr. Kamyar Afshar explains the importance of Claire building her strength so she can handle the transplant, if she’s given one.
Dr. Kamyar Afshar got down to the nitty gritty. He wanted to know what antibiotics still worked for her, how many bowel movements she has a day and the last time she coughed up blood.
“Two days ago,” she told him. “It’s usually one or two times a month.”
He prescribed walks every day to build up her endurance and suggested she increase her continuous oxygen flow from her normal 2 liters per minute to 6 liters per minute when exercising. He looked down at her worn Birkenstocks and said, “Your shoes will have to change.”
The doctor cranked up her oxygen and told her that if she wanted to get a transplant, she’d need to be able to do 15 sits-to-stands in a minute. He said this was non-negotiable. She won’t be able to use her arms after the surgery to get up from a chair or bed, he explained.
He asked her to climb off the exam table and show him some squats.
Claire — who used to do yoga six days a week, loved to swim and even went through a phase when she did difficult workout videos like P90X with her dad — crossed her arms in front of her chest and showed the doctor all she had.
For the first time that day, her cheeks had color.
“I don’t anticipate you’d be on the list for too long,” Afshar blurted out.
Given her blood type and her condition, he said, she’d probably get a transplant within three months of being approved — if she’s approved.
The first full day of evaluation appoitnments complete, Claire and her mom breathe sighs of overwhelmed relief.
Claire’s eyes opened wide, and her mom appeared to melt into her chair. Suddenly, it seemed real.
“Three months!” Yeager said outside the center. “That made me want to throw up a little bit.”
“I’m a little overwhelmed,” Claire said. “I need to go back to the hotel and binge-watch ‘Real Housewives.’ I want to see white women fight over nothingness.”
Hoping for a chance
The truth is, according to Claire, not longing for different lungs for most of her life served her well.
She was able to “work with what I had in front of me,” she said, rather than fixate on what she didn’t have. She also suppressed that part of herself that might have simply dreamed of something more.
“If I had told myself things could be better than they are now, I think I would have driven myself crazy with frustration and jealousy over other people’s lives,” she said.
In changing her mind, she said she had to swallow some of her pride and “open this floodgate of emotion that I kept really deeply buried.”
A slew of tests still awaited Claire, but she was now all in. She had opened herself up to the possibility that life — for her — could be different and not as challenging.
“For the first time ever, I’m going there, and it’s really scary,” she said. “Now that I actually want something better, what if it doesn’t happen? What if I don’t get it? What if it goes wrong?”
The pressure is on, and Claire can only hope that she will be given her chance.