Aldo Williams can recall the exact moment he finally came to terms with the deadly power of chronic obstructive pulmonary disease.
“My wife was at work and I was home alone,” he said. “I had walked upstairs and the flare-up was so intense I couldn’t breathe.
“I thought, ‘This is how I’ll die. My poor wife is going to come home and find me on the floor.’”
That event, in 2016, marked his first serious COPD attack. It served as a valuable wake-up call, Williams said.
He first received his diagnosis in 2007. To this day, he admits he didn’t take it seriously.
Over the years, he toughed out the symptoms.
“I was just in some kind of denial,” he said. “I could still exercise a little. And much of the time, I could pretend to myself that I was fine.”
And in many ways, his life carried on just as fine.
In 2011 he rekindled a love with Deborah, a high school crush. By 2013 they married.
Deborah’s work in marketing involved extensive international travel. Williams often accompanied her on long trips to places they came to love, including South Africa, Portugal and Poland.
By 2016, the year of his terrifying flare-up, it became impossible for him to travel much.
“Even trips to the grocery left me breathless,” he said. “Cutting the grass became an ordeal. I needed oxygen and, some days, just going to the mailbox was too much. The disease just started creating more limitations every day.”
Williams started to take more serious care of himself, regularly seeing a pulmonologist and paying closer attention to his medication.
He even consulted a lung transplantation program, to see if he might be considered a candidate. It didn’t seem like the right idea at the time.
He felt discouraged. Williams believes it’s important for others to understand the mental impact chronic lung disease has on people.
“I felt like my life was being taken from me,” he said. “Through my 40s, I had been able to play sports. I always enjoyed playing with younger people, especially kids. When I couldn’t breathe, that all ended. It took a big mental toll.”
He sought counseling for the ensuing depression—a step he recommends to others struggling with chronic physical health conditions.
“It’s hard to be disabled,” he said. “It took about six months, but it really helped me get back on the right track.”
One step closer
In 2018, Williams and his wife moved to Caledonia, Michigan. He became a patient at Spectrum Health.
As his condition worsened, he became increasingly aware of COPD’s relentless progression.
He met with a Spectrum pulmonologist, and the health team considered lung reduction, a surgery that helps some COPD patients, but in Williams’ case it seemed lung transplantation would be his best choice.
The timing, however, complicated the process.
“His evaluation began in February of 2020,” Spectrum Health Richard DeVos Heart and Lung Transplant Program coordinator Jennifer Hartman, RN, CPTC, said.
His evaluation process ended in mid March, just as COVID-19 had begun to affect the health care landscape.
Williams stayed patient through those turbulent weeks, Hartman said.
“It was a tough time,” she said. “We didn’t know how long people would wait for organs. There were so many unknowns and increased anxiety. So we did lots of video chats with him and his family.”
“They are so amazing,” Williams said. He still marvels at how much the transplant team cares about him and his family.
“Starting with Jennifer, the staff took us through every possible scenario,” he said. “They didn’t just explain it to me, but also to my wife and sister. And they were hopeful. I started to understand that this was something that could prolong my life.”
Once on the transplant list, he didn’t have to wait long.
His phone rang before the end of March. The team had donor lungs.
“I was in total awe,” Williams said.
He and Deborah threw themselves into a mad scramble.
“They had told me to have a bag packed and I hadn’t done it yet,” he said. “It took us 45 minutes to get to the hospital, which is only 15 minutes away.”
But as the team prepped Williams for surgery, another phone call came in.
The donor’s lungs were compromised. There would be no surgery that day.
These types of dry runs aren’t uncommon, Hartman said—they happen about 30% of the time.
At first, Williams felt crushed, even though he understood why the procedure couldn’t happen.
“But I’m a very religious person,” he said. “So I said, ‘OK, those lungs were not meant for me.’”
On Sept. 28, 2020, after six more months on the waiting list, he got another call.
This set of new lungs would work. On Sept. 29, Spectrum Health cardiothoracic surgeon Edward Murphy, MD, performed the lengthy operation to replace both of Williams’ lungs.
Williams became one of 2,539 people in the U.S. to receive a lung transplant in 2020.
Just a day later, they had him up and walking—without any need for supplemental oxygen, Williams said.
The path to recovery
Williams stayed in the hospital for a month, then in rehab for another month.
A month after he returned home, he contracted COVID-19, an illness he battled for three months. In January 2021, he received an antibody treatment.
With his strong new lungs, he bounced back.
“I can’t even remember how long it has been that I felt this good,” he said.
His life is now vastly different.
“These days, I’m outside doing yard work,” he said. “I can take my dog for a walk. I can run and play with my grandchildren and great-grandchildren.”
He said he and his family feel immense gratitude to the donor’s family. There are still moments when he can’t quite wrap his head around the generosity.
“Their sacrifice meant that I could live,” he said. “I’ve lost family members, so I know the pain of grief. And the idea that—at such a hard moment in your life—you could think about how to help others? That’s such a beautiful thing.”
He hopes his experience helps the 16 million people currently diagnosed with COPD and encourages the millions of undiagnosed people to seek care.
He also wishes more people will learn about becoming an organ donor in Michigan.
And he’s constantly grateful for the ongoing support of his post-transplant care team, including Reda Girgis, MD, and nurse Colleen Clonan.
Not long ago, he took all the equipment he once needed to treat COPD and placed it into a corner of his room. He took a picture of it before giving it away.
“My room used to look like the ICU,” Williams said. “It’s so different now. This whole thing has been a wonderful journey.”