Sept. 25, 2013
By SUSAN DONALDSON JAMES
via GOOD MORNING AMERICA
Doug Smith, a police officer with life-threatening pulmonary fibrosis, was one week away from his wedding day last June when he got the 1:30 a.m. call that a donor lung had become available for transplant.
The Zanesville, Ohio, 42-year-old had never smoked and had been healthy for 20 years, but in 2011, asthma-like symptoms made it almost impossible for him to breathe. With no effective therapies, he was put on a transplant list.
“I was tired all the time,” said Smith, who worked the night shift at the jail in town. “I was doing six liters of oxygen a day. “My body had started to go pretty quick.”
The couple, each of them married before and with three teenage children between them, had been dating for five years and had planned a small, quick church ceremony because they worried about his precarious health.
Typically, those with this disease only live about two to five years after diagnosis.
Wedding plans were dashed, and within days of the call from Cleveland Clinic’s Transplant Center, Smith was in surgery.
But one month to the day after getting a new lung, on June 21, Smith and his now wife, Susan, tied the knot on the rooftop of the hospital before family and staff.
Doug Smith had been transferred to the recovery floor, and his bride to be had cleared the on-site marriage with the hospital chaplain, but the rest was a complete surprise.
“The next thing you know there was a roomful of nurses with pen and paper, running in and out of the room, deciding among themselves that they would take care of everything,” said the prospective bride, 46. “It was amazing — they were so excited. It was very emotional.”
“We had joked before about getting married in Cleveland,” she said, which was more than two hours away from their home.
“We already had the marriage license and it was going to expire,” said Susan Smith. “Forty bucks is forty bucks, especially with finances going against us.”
The staff provided a bouquet of daisies, her favorite flowers, and one nurse even provided her own veil. Another, who was a consultant for the cosmetics company Mary Kay, rolled in a big suitcase of make-up.
Nurses even created a sign for the back of Smith’s wheelchair: “He got his lungs, she got his heart.”
“I had a cute little white dress and that was plenty good enough,” said Susan Smith. “I was in flip-flops because my daughter forgot to bring shoes.”
“They all brought food donated by Starbucks and Au Bon Pain,” she said. “They even provided a cake — something I had never thought of. One of the nurses said, ‘You are not getting married in the room. We are taking you up to the rooftop.'”
Doug Smith was fortunate to get a new lung and even luckier to make it through grueling surgery and a two-month hospital stay to make sure he did not reject the organ.
“He had a tough transplant,” said Dr. Marie Budev, medical director of Cleveland Clinic’s Lung Transplantation Program. “He had some issues with primary graft dysfunction. His lungs got wet and he had to remain on a ventilator for a while. “He’s been through a lot.”
The survival rate is about 53 percent after a lung transplant, but Smith’s youth may make his odds better.
“If they are younger and their other organs are younger, they are able to sustain a lot of the toxic effects from the immune suppressive drugs they are on for the rest of their life,” said Budev. “We do have patients 20 years out — they are a small fraction, but everyone has that potential,” she said.
Though Budev was overseas when the Smiths were eventually married, she said the hospital staff had been “inspired” by the couple.
“We had never had a wedding after a transplant like this — it was special for us,” she said. “Despite the terrible things that happen, life goes on.”
The Smiths say that Doug’s brush with death underscores the scarcity of organ donors that requires the average American to wait six to nine months for a transplant.
Currently, 1,632 Americans are waiting for lung transplants, according to the federal Organ Procurement and Transplantation Program. Pulmonary fibrosis is now the leading cause of such transplants in the United States, overtaking chronic obstructive pulmonary disease, or COPD.
Pulmonary fibrosis, an insidious disease that scars the tissues in the lungs and responds poorly to medication, accounts for about half of all lung transplants performed at the Cleveland Clinic.
A recent study estimates that about 500,000 Americans suffer from the disease, most with no known causes, according to the Pulmonary Fibrosis Foundation.
“The decline is rapid, and it is an unpredictable and relentless disease,” said Budev. “You can have coughing, or is it dismissed as asthma and after an X-ray a workup is done, and you can see the abnormal pulmonary function. They are short of breath and have exercise intolerance and the ability to do tasks is difficult, but symptoms can get much more severe.”
Sometimes the disease is caused by smoking, but in Smith’s case, there was no known cause, making it the idiopathic.
“In some cases it may respond to immune-suppressive therapy, but transplant is the only option especially for patients like Mr. Smith,” she said.
As Doug’s disease worsened, doctors told him to think about a lung transplant. His breathing was so bad he could barely leave the house.
Budev put him on the transplant list June 18 and because of the severity of his condition he was in the top 10 percent, and the call came three days later.
For 41 of the 46 days in the hospital, Smith had a tracheostomy or ventilator to help him breathe. Even after he was released from the hospital, the couple had to live in a nearby hotel to make sure his condition was stable.
Today, three months post surgery, Susan Smith is back at work at Home Depot and Doug Smith is hoping to return to work.
Despite being on multiple medications, he said he “feels great. … I still feel weak in my legs, but I am going to rehab three days a week. I am very hopeful.”
The couple wanted to share their story to raise awareness about pulmonary fibrosis and to encourage others to become organ donors. Susan Smith said her son had been an organ donor before he was murdered at 18, but because of the crime investigation and autopsy, his organs were never used.
“I never knew how important it was until I had a co-worker with a pancreas donated because he was going to die,” she said. “It’s about saving lives and we need to get the word out.”
Susan Smith admits it’s been a “long road” to recovery, but she praises the staff at the Cleveland Clinic.
“It’s amazing, the way they took care of us — even me,” she said. She stayed by her husband’s side throughout the medical ordeal. “They don’t just take care of the patient, but the person who is with them. They were always looking out for me, too.”
The couple is busy planning a benefit event to help pay for medical bills and said they have received generous support from family and friends.
“I am so grateful,” she said. “I thank God for his second chance, and we are looking forward to a good future.”
She remembers the hard days before they were married when her husband’s health was on the decline.
“He made funny remarks that I don’t know what I got myself into,” she said. “But everything happened the way it was meant to be. I am supposed to be where I am.”