Support Andrea's journey to a 2nd Lung Transplant

Wrestling with her dogs in the sun, or with a creative project that’s good, but not-yet-great, Andrea’s energy and ambition are boundless. That’s when it’s easy to forget that she has a life-shortening disease. The same one that claimed her brother, Joe, in 1991. The one that’s caused dozens of hospital stays, a handful of surgeries, and a lifelong regimen of medication, physical therapy, and medical tests.

In 1998, Andrea became one of the first Cystic Fibrosis (CF) patients to receive a double-lung transplant at Massachusetts General Hospital (MGH). Ken Gavin, her uncle, and John Gensure, a dear family friend, were Andrea’s living donors. 

Soon after a six-month hospital stay, she was making a remarkable recovery and already on a mission to start giving back. Andrea shared her story with other CF patients, and so did her medical team. She helped change the conversations doctors and patients were having about CF and life post-transplant.

She also built a stellar career, married a wonderful guy, bought a house, and furnished the wide front porch with a pair of lovely rockers and two rescue dogs. 

This isn’t to say that her illness hasn’t shaped her life, because it has. It’s forged her into one of the fiercest women you’ll ever meet. A strong advocate for her own health and that of others, who also finds time to volunteer for Make-a-Wish, grow a thriving garden, and be active in the online transplant community. 

Through that community, Andrea met opera singer Charity Sunshine Tilleman-Dick, who introduced her to the world-renowned transplant team at Cleveland Clinic. Soon, Andrea was traveling to Ohio and learning how transplants have changed since 1998, and she and Charity had become fast friends. They shared an understanding of having life regularly interrupted by hospitalizations, and of managing complex health issues on top of being a wife, sister, daughter, friend, and artist—all while never losing sight of the fact that #everydayisagift.

That hashtag is one that Andrea has long lived by. It also helped set the tone for “Andrea’s 20th Lungaversary ,” the celebration that she and her husband, Stefan, hosted for more than 200 people who gathered to celebrate her incredible transplant milestone in October 2018.

In 2020, as the pandemic caused understandable panic in the CF and transplant communities, Andrea got involved in a webinar series that would become The CF COVID Stories Project. She literally became its voice, art directing and narrating a video, in addition to designing a website to help bring information and encouragement to the New England CF community.

After two long years in lockdown, on March 14, 2022, Andrea developed a fever. Though it wasn’t COVID, but pneumonia, she experienced respiratory failure and had to be put on a ventilator. 

Being on a vent means you can’t eat or drink. 

Your physical strength deteriorates with frightening speed. 

You lose your sense of smell and your ability to speak. 

Andrea quickly found ways to adjust. When she wasn't conversing via speech apps and a whiteboard, she pushed a portable ventilator around the hospital hallways, rocking to a “fight mix” that included classics from her 1998 transplant playlist.

And so, her voice remains loud and clear and so does her plan. She left the world-class acute care provided by Brigham and Women’s Hospital and her subsequent rehab at Spaulding Hospital on August 23rd. It was a hard-fought victory. Then it was on to Cleveland Clinic to be evaluated (her 4th time) for a second transplant. It was a journey she made without the physical presence of her friend Charity, who passed away on April 23, 2019, but whose love and encouragement will always be remembered and strongly felt as she sat in the very same offices and chairs her dear friend did. In the end, Andrea did so well at rehab she was once again declared too well to get listed for transplant. However, her testing shows a consistent slow decline, and the healing and recovery from 5 months in the hospital will continue for at least a year, maybe more. She is still on oxygen part-time and has PT services at home. Most days she has little energy for much else, but she is fighting back. She is scheduled to go back to Cleveland in April for another evaluation unless she shows signs of further decline.

The physical, mental, and financial requirements for transplant candidates are daunting. Costs include income loss from being unable to work, hiring help at home, travel to and from Cleveland pre-transplant, relocating for months for the surgery and rehab, and extensive out-of-pocket medical expenses. This will mean more time spent focusing solely on her health, both for her as well as Stefan, who took unpaid leave from his work to spend days and nights at Andrea’s side in the hospital. Now at home, the strain and trauma of what they have been through is intense and won’t diminish in the months to come.

While we can’t lessen the medical and physical challenges ahead, we can come together to help ease the financial demands. That support will mean a lot when Andrea is running 6-minute walk trials in her driveway or walking the halls of Cleveland Clinic, fight mix on, letting her new lungs know that they’ll be well loved and looked after—but that they better be ready to work hard. Not just for her sake, but for everyone she inspires, every day.