Alaska woman battles pulmonary fibrosis and COVID-19 quarantine while awaiting the gift of life

August 2020

Joyce Brooks is on the transplant waiting list. She’s waiting for lungs to replace hers that are scarred and hardened by Pulmonary Fibrosis.

Her story with lung disease begins in Anchorage, Alaska in 1997. She was stationed there while serving in the Air Force. Joyce led an active life; she was involved in her church, loved the gym, spent time with friends, and volunteered for the Crisis Pregnancy Center. Her life was full.

After the Air Force, Joyce made Alaska her home and she opened her own business – a hair salon. Her life was consumed with nurturing the business and her employees while trying to maintain a social life.

She can’t pinpoint the exact day when she noticed her labored breathing, but eventually Joyce became aware of how difficult it was for her to complete everyday activities like walking from the bedroom to the kitchen. Then a close friend passed away – and unexpectedly. This sudden loss prompted Joyce to make an appointment with her doctor, and she was diagnosed with Pulmonary Fibrosis in 2012.

A few years into her diagnosis, Joyce gave birth to her beautiful son Daniel. She longed to be a mother, and Daniel is most certainly the light of her life, but motherhood hasn’t been easy. Joyce struggles to keep up with him as she tires easily and it’s difficult to carry him. More recently, Joyce had to let go of her beloved business and the income that came along with it. She is now on disability, a fact that she never thought would be part of her story at 45 years old.

Joyce moved to the Seattle area temporarily – and alone – to wait for a double-lung transplant, while Daniel is with his dad in Alaska.

“I arrived here in Seattle [on] Feb. 5, 2020 at 2:25 p.m.,” Joyce says. “I knew it was going to be hard for many reasons, however number one, for me, is being away from my son.”

Joyce can talk to him regularly through Facetime, but it’s still difficult to be so far apart. And to complicate matters, the COVID-19 pandemic struck soon after she arrived in Seattle, isolating her further, and extending her wait for lungs as most regions experienced fewer donors as people quarantined at home. Joyce, like many of us, has experienced a roller coaster of emotions this year.

Joyce’s son, Daniel

“How can I be 45 years old and finally have a kid, which I’ve always wanted,” Joyce explains. “And finally, it happens – then bam! I have a disease that I may not even live through to enjoy raising him. Then COVID-19 comes into play and bam again! The world is quarantined. I’m quarantined by myself.”

Joyce has looked within to tap into her faith to help her through this strange and difficult time in her life. She says she still has bad days but tries to encourage herself to stay strong in those moments instead of allowing fear or despair to take over. She looks forward to the day where she can breathe easily, regain her strength, and chase her son around a playground.

“I’m most looking forward to getting back to my son and enjoying life with him,” says Joyce. “He starts kindergarten this 20-21 school year. I long to watch him learn, mature, and help him to grow during these very impressionable years. Also starting over and establishing another career. Donation means everything to me. It gives me a chance for a new life!”

While Joyce awaits her chance at a new life, the rest of us can make an impact by registering to be an organ donor at lcnw.org. Talk to your family about this decision. Make your wish known so they don’t have to make this decision in moments of grief. Saving lives through organ donation will help your loved ones cope, and it’ll mean the world to waitlist patients like Joyce and her son, Daniel.