Searching for a breath of life: Woman with rare lung disease needs double lung transplant

Brandi Snodgrass Hill would have died had it not been for an ice cube. It was late-night at a Jonesboro-area hospital, and Hill was a patient there after a severe asthma attack. A tech stopped in the room to see if Hill needed some ice.

She had been dead in her bed for nine minutes.

Medical professionals were able to revive her. After her near death experience, the Brookland native began to suspect she might have something worse than severe asthma. After she volunteered for an experimental asthma treatment program, doctors made a dire diagnosis. She had bronchiolitis obliterans, a potentially fatal, irreversible lung condition.

Hill told Talk Business & Politics she was told she would only live two more years. That was five years ago, and she needs a double-lung transplant to survive. The 40-year-old’s health has been poor, and at this point she might not survive the surgery.

“Not everyone gets a transplant … it might not be in the cards for me,” she said. “I didn’t think I’d make it to 40. I’m very happy about that.”

The disease is an inflammatory condition that affects the lung’s tiniest airways, the bronchioles. In affected people, the bronchioles may become damaged and inflamed leading to extensive scarring that blocks the airways, according to the Genetic and Rare Diseases Information Center (GARD). Symptoms include a dry cough, shortness of breath, fatigue and wheezing in the absence of a cold or asthma. Chemical exposure may cause some cases, but scientists aren’t sure what causes the disease, Hill said. Some believe it might be genetic, and carriers only exhibit symptoms when they reach early adulthood.

Hill, a 1995 Hoxie High School graduate, lived a typical childhood. She ran and played with other kids with no sign a deadly lung disease was in her body. In high school she was a cheerleader, and when she finished, she ultimately landed a job as a paralegal.
“I loved my job,” she said.

After her son, Bryar was born, she started to notice a change. Even the simplest of tasks took her breath away. Doctors diagnosed her with asthma. It became so severe she had to leave her job, and emergency trips to the hospital increased.

After her actual diagnosis, Hill began to write her son notes. The notes included instructions about how to drive a car, shave, and others. She didn’t know if she’d live long enough to teach him to perform those trademark tasks that define a teen’s coming of age.

“I didn’t know when or if I would live to see those things,” she said.

Patients with one autoimmune disease are typically susceptible to others, and when fluid began to collect on her spine, Hill knew something else was wrong. She endured about 60 treatments in which a long needle was pushed through spine to relieve the fluid pressure – while she was awake. She eventually had to have a shunt placed in her head. For the procedure her head was shaved, another indignity that bothered her for months, she said.

Her bad health has made it impossible for her to get the transplant she needs. To qualify for a transplant, a patient has to be in poor enough health that it’s a necessity, but at the same time they have to be healthy to survive the surgery. Hill’s lung capacity has declined from 23% six years ago to 19% now. She’s been steady the last several years, but at last count, she’s had 19 friends who’ve either died while waiting for a transplant or succumbed after their body rejected the new organ. She advocates for people to donate their organs, she said.

An estimated 130 million people in the U.S. are registered organ donors, but each day 116,900 people are in need of an organ donation, according to organdonor.gov. Medical factors, time spent waiting, how sick the person is and other factors are used to determine a person’s position on the organ donor wait lists. About 22 people per day die waiting for a transplant. One donor organ can impact up to eight lives.

Hill never dreamed she’d live long enough to reach her 40s or watch her son reach high school. The grind is tough. She receives blood transfusions each month. There are long and predictable stints in the hospital. Simple tasks,such as taking a shower, require preparation and can end with a 30 minute breathing treatment.

“Can you imagine being so out of breath you can even dry yourself off with a towel?” she said.

If she does get healthy enough for a transplant she realizes it won’t save her life. It will only buy her time, a thing no one is promised and no one should take for granted, she said. Many in the transplant community have been afflicted with a condition or disease their entire lives.

“I’m lucky. I had a life. I got to play as a kid. I had a normal high school life growing. I got to fall in love, and work at a job I really liked,” she said. “I got to have a child. A lot of people don’t get to have or do any of those things. I’m grateful.”