At 28 years old, Delta resident Jill Hopkins Baker had been left exhausted and with only 17 percent lung capacity by lifelong cystic fibrosis.
“She was very weak…she weighed 100 pounds,” said her mother, Michelle Lewallen. “She spent her days just taking care of herself. She could move, but it took everything she had.”
On Nov. 29 of last year, Baker told her mother her lungs were very tired. “I knew that it wouldn’t be long that she would no longer be with us,” Lewallen said.
What neither one knew was that same day Baker would receive a call from the University of Pittsburgh Medical Center (UPMC) in Pennsylvania, saying a set of lungs had become available for a double transplant, and that by January of this year she would have a new lease on life.
“I feel like I’m stronger than what I think, and I just want to live (now to honor) the donor,” Baker said.
In order to help with her medical expenses, a fundraiser through the Children’s Organ Transplant Association (COTA) of Bloomington, Ind., will be held Saturday, July 27, at the Fraternal Order of Eagles chapter in Delta, 304 E. Main St. Beginning at 5 p.m., the event will offer a spaghetti dinner for a freewill donation, gun and 50/50 raffles, and Chinese and silent auctions.
COTA, a non-profit organization, will collect and manage all the proceeds for Baker, reimbursing her for medical-related expenses. One hundred percent of the funds go directly to Baker.
And while Baker, now 29, is still recuperating, “She’s not out of breath anymore,” Lewallen said. “The sky’s the limit for her. She’s functional again. It’s definitely a life-changer.”
Baker first exhibited hints of cystic fibrosis (CF) at 5 1/2 months old. Though she ate constantly she didn’t gain weight. During a doctor’s visit she became a suspected case of failure to thrive.
However, an office nurse noticed the infant’s stool was abnormal. It was a telltale symptom of CF, which affects the body’s cells that produce mucus, sweat, and digestive juices. Baker was hospitalized immediately at the former Mercy Hospital in Toledo, then transferred to Toledo Hospital, which specialized in cystic fibrosis cases.
“I was relieved, because I (thought I) knew whatever she had could be fixed. But I was young and naive. I didn’t realize how serious this disease actually was,” Lewallen said.
Doctors told her that, at best, one out of two people suffering from CF would live to be 18. (That has since changed with average life expectancy well into the 30s) Lewallen was trained to perform physical therapy on her daughter, which consisted of pounding areas on her back and chest to loosen an overproduction of mucus in her lungs. Baker also was given daily aerosol medication, and enzymes to help digest her food.
Those procedures continued for years, but as a teenager Baker received a vest created for CF patients that is worn twice a day and shakes the body to loosen built-up internal mucus.
It was after she graduated from Delta High School in 2008, where Baker was a cheerleader, that her condition progressively worsened. Increasingly labored breathing brought an end to relatively normal activities.
“When my friends were out having fun, I couldn’t. It didn’t almost seem fair. You question why,” she said. “I feel like it’s been a lot of sacrifice.”
An evaluation at UPMC showed Baker’s lungs were at only 24% capacity. So seven years ago she began the process of being placed on a transplant list, although she was considered still too healthy to qualify.
“We were upset because we knew she was struggling to breathe. They don’t want to transplant someone that’s too healthy,” Lewallen said.
Baker continued to be evaluated annually, and eventually was placed on continuous oxygen. She was hospitalized every few months for several weeks at a time, her lung capacity decreased to 17%, and breathing treatments became constant. By Oct. 30, 2018, Baker was placed on a transplant list.
Feeling cheated by her illness, Baker turned to prayer when she was 19, and her perspective changed.
“I found the Lord, and that helped me a lot,” she said. “If it wasn’t for my faith I don’t know how far I would have went. I prayed about it, and I got, like, peace – that everything would be okay. Through my journey I got calm. I knew God was in control.”
She said waiting for a transplant call stirred up mixed emotions. “The whole time I was waiting I cried every day. I was at the end stage of my illness. When I finally got the call it was kind of a relief,” she said.
When the call from UPMC green-lighting a double lung transplant came on Nov. 29, 2018, Baker and her parents got only a four-hour window to arrive at the hospital from Delta. They made it in 3 1/2 hours. The transplant took place the next day.
Baker remained hospitalized for 13 days, but had to remain in Pittsburgh for another 1 1/2 months to continue treatment. She went home to Delta on Jan. 15, but has since been hospitalized several times for related conditions.
“Her breathing has improved, but now she still has her rough roads,” Lewallen said.
The lung donor remains anonymous. If she wishes, Baker can correspond by letter to the donor’s family through COTA channels, but was told responses are rarely returned.
Dr. Joseph Pilewski, co-director of the UPMC Cystic Fibrosis Center, said the typical wait on a lung transplant list is one to three months. He said 15% of those on a waiting list die before a lung becomes available.
Major complications Baker could face are lung rejection, infections, and kidney disease, Dr. Pilewski said. However, “She has excellent lung function and few limitations,” he added.
Lewellan organized the July 27 fundraiser at the Delta Eagles location, and hopes to raise $20,000. She said all donations are tax-deductible, and people who can’t attend the event can donate at COTA.org/campaigns/cotaforjillb.
Anyone wishing to donate items for the fundraiser’s auctions can call 419-822-7228.
Baker is taking time during her convalescence to consider where her life will lead – a life she’d like to think her donor would appreciate. She hopes to become employed within the next year, but for now “I’m enjoying the little things in life I couldn’t do.”
She said the recent theatrical film, “Five Feet Apart,” which portrays the increasingly close relationship between two young CF patients, accurately conveys many of the struggles she has experienced. However, she never felt near the end of her fight with the illness.
“I never not had hope,” Baker said. “Never give up fighting.”
Reach David J. Coehrs at 419-335-2010.