Among the papers Tracy Conway, Union, carries with her on daily visits to the pulmonary rehab department of Barnes-Jewish Hospital in St. Louis is a card her grandson Jason made for her 60th birthday. It includes a picture he drew of them at the park together — he is on the slide, and she's holding an oxygen tank.
“That's how he knew me,” said Conway, with sadness in her voice.
But not any more. Conway received a double-lung transplant Aug. 11 and became the 1,500th adult patient in the Washington University Barnes-Jewish lung transplant program.
She no longer needs an oxygen tank to breathe, and she can get around, up and down to play with her grandchildren, Jason, who's 7, and Ryker, 4.
Seven years ago when Jason was born, Conway, who had COPD or Chronic Obstructive Pulmonary Disease, was on oxygen, but still well enough that she could get around some. But by the time he was 2, she was too sick to help care for him or play with him. Things were even worse when her granddaughter was born a few years later.
“They didn’t know me healthy. They had never seen me healthy, able to breathe,” said Conway. “They didn’t know me without that (oxygen) tank. My little grandson used to say, ‘I’ll get your breathe, Grammy,’ and he’d carry my tank.”
But those days are all in the past now, and Conway is making up for lost time. For the first time, she went to her grandchildren's Grandparents Day celebration at school without an oxygen tank, and it felt great, she said, smiling.
Family History of Lung Disease
Conway comes from a family with a history of lung disease, and as a young child she had asthma, but grew out of it as she got older.
She was in her late 30s or early 40s when she began experiencing shortness of breath. She was working at Chrysler, and her breathing would get so bad at times that she had to be hospitalized.
Then in 2005, she had to quit work completely and go on disability. She had been missing too much work, often because she was in the hospital.
“I would get a little cold and it would go right straight into pneumonia,” said Conway. “I couldn’t breathe, and everything in life was becoming more and more difficult.”
As the years passed, Conway's lung function grew worse and worse. In 2012, she was evaluated as a lung transplant candidate, but her lung function wasn't bad enough yet.
“They said I was a good candidate, but I wasn’t sick enough yet; I had to get even worse,” Conway recalled. “They want you live with your own lungs as long as you can.”
For a year or two after that, Conway's lung function was stable, but then it began to plummet.
“It was so bad that the only thing I could really do was sit in my house on oxygen 24-7,” she said. “The slightest thing would make me sick, and I would end up in the hospital.”
When Conway went back for an evaluation earlier this year, doctors were ready to put her on the transplant list, but she had to do a few things first: Start a fitness program, lose some weight and also have a number of tests completed, so that when her time came to have a transplant, she was ready to go.
“They want you in the best condition you can be in before the transplant, and it really shows after the transplant. You can tell the people who were in better shape before their transplant,” said Conway.
Obviously there are limitations to exercise for people who have such compromised lung function, but Conway said she did what she could.
“You start out as slow as possible, walking on a treadmill at a turtle’s pace,” she said.
Part of the purpose of having her start a fitness program was to prove to the transplant team that she was committed to doing what it took to make her surgery successful.
“They want to make sure you are willing to put in the effort it’s going to take afterward to stay healthy,” Conway explained.
First Breath Was ‘Unimaginable’
Conway was placed on the transplant list June 28, and she received a call the night of Aug. 10 that there was a match for her.
Her surgery was the next day, Aug. 11. All she knows about her donor is that he was a 21-year-old male from the St. Louis area who was killed in a car accident.
“I can’t even explain how I feel about it. Before the transplant, I had second thoughts whenever I would think about it because it’s sad, coming from someone else’s tragedy,” said Conway. “But you can’t look at it that way. It’s a gift. They’ve given a gift. It was a tragic accident, but for (the family) to say, ‘Yes,’ to donate the organs gives someone else a chance to live.
“My surgery was on a Thursday, and every Thursday afterward, I would think about what his family was going through — it’s only been a week, it’s been two weeks, a month . . . It’s the anniversary of a tragedy for them,” she said.
Conway feels like her donor is now a part of her, and she thanks him every day. After spending two weeks in the hospital post-transplant, she was sent home to continue her recovery and has had no major complications.
“I got some good lungs, and I really feel like he is with me. I thank him every day,” she said, smiling.
Conway remembers the first breath she took on her own after waking up from surgery.
“I wasn’t on the respirator long, and when I woke up, (breathing) is the first thing I noticed. I took a deep breath, and there was a lot of pain, but it was unimaginable the feeling I had when I was able to take that first breath,” she said.
Post-surgery, Conway was up and around quickly to facilitate her recovery. She had lots of stitches and drain tubes, “but they bring that treadmill right into your room and they hook those drain tubes up, and I walked,” she said.
For the first two months after she was released from the hospital, Conway lived with her son's family since her daughter-in-law was home during the day to care for her.
She also made daily trips to Barnes-Jewish Hospital during the week for physical therapy and clinic visits, where the transplant team monitored her progress. For the first two months, Conway relied on relatives and friends to drive her into St. Louis each day (some who had to drive a long way to Union just to pick her up).
“It’s overwhelming to know how everyone has pitched in to help,” she said. “It’s an outpouring of love really.”
Conway takes 16 pills twice a day. These include anti-rejection pills, anti-fungal pills, antibiotics, Prednisone and more. She takes them at the same time each day, setting an alarm sometimes to make sure she isn't late to take them.
This Sunday will mark four months since Conway's transplant, and reflecting on how much the quality of her life has changed in that time, she is grateful to everyone who helped make it possible, beginning with her doctors in Washington .
“Dr. William Fritz and Dr. Hafeez Siddiqui, who both had such faith in me and gave me so much support and encouragement and worked so very hard to get me into the transplant program at Barnes, and also the Pulmonary Rehab team at Mercy who helped me get into shape before surgery; they were the most supportive and kept pushing me in the most positive way,” said Conway. “They too never lost faith in me, and I could never have made it this far without them, and all of my wonderful family and friends who have stepped up to help in any way they can.”
Never Imagined This
Looking ahead, Conway is extremely optimistic and excited about all the possibilities in front of her, although she's most looking forward to getting to be active with her grandchildren.
“Being able to be involved with their lives, go to their ball games,” said Conway. “They are just now getting involved in sports, but I could never go to games before. I could maybe sit in the car and watch.”
She is grateful to the transplant team with the Washington University and Barnes-Jewish lung transplant program for everything everyone of them did for her.
“It was a smooth process. They are such a team. They don’t want you to worry about anything but getting better. They handle absolutely everything for you,” said Conway. “You have a coordinator and all these people on a team, and sometimes I feel like I’m their only patient because everybody is so focused on me.”
Thinking back to the days before her lung transplant, Conway never imagined her life could be this free again.
“There was a time when I thought that was how my life was going to be forever. I was literally living to breathe,” she said. “I felt like that was going to be my life forever.
“I never in a million years thought it could be like this. Even before transplant, I thought it might make my life a little bit better, but not like I am now. Nothing like this,” she remarked. “It’s a whole new world, a second chance, a miracle really.”
Program Celebrates Milestone
As much as Conway is celebrating her new life, her doctors and the Washington University and Barnes-Jewish lung transplant program team are celebrating too. Theirs is one of the oldest lung transplant programs in the country and one of only a few to have performed 1,500 adult lung transplants.
“This is a milestone for our program and for our patients,” says Ramsey Hachem, MD, medical director of the lung transplant program. “The program has garnered valuable experience over time and built a strong reputation. I’m proud to say that we’ve taken care of many patients and provided excellent care.”
Created in 1988, the lung transplant program was established by a team of physicians, surgeons and nurses who had performed the first successful human lung transplant in 1983 at the University of Toronto. The program’s many innovations include the development of the sequential bilateral lung transplant — the transplantation of each lung separately.
Today, the Washington University and Barnes-Jewish lung transplant program is one of the largest in the world — the only one in Missouri — and renowned for its excellent patient outcomes. Each year, the team performs between 65 and 75 lung transplants, said Dr. Hachem.
People need lung transplants for a variety of reasons, he said. Common conditions that lead to needing a lung transplant are cystic fibrosis and COPD, but the most common cause is pulmonary fibrosis.
“That accounts for between 45 and 50 percent of all lung transplants in the U.S. today,” said Dr. Hachem, explaining pulmonary fibrosis is a scarring lung disease, where scars form in the lungs and as the scarring progresses, patients become more disabled because of breathlessness to the point that they need oxygen.
Unfortunately, only about 20 percent of organ donors make suitable lung donors because lungs are susceptible to injury at the time of brain death, Dr. Hachem explained.
Daniel Kreisel, MD, Ph.D., surgical director of the lung transplant program who performed Conway's lung transplant along with Dr. Varun Puri, said reaching the 1,500th transplant is cause for celebration because of how many lives have been saved and improved.
“What sets us apart, in addition to our large clinical program, is that we have one of the largest lung-transplantation research programs in the country,” Dr. Kreisel said. “I look back at the hundreds of lung transplants our team has performed over the years, and I’m proud to say that we’ve made a significant impact on 1,500 lives.”
It was 1963 in Jackson, Miss., that the first clinical lung transplant was performed, said Dr. Kreisel. That patient survived less than three weeks.
In the 20 or so years that followed, there were 40 attempts at lung transplantation around the world. The longest survivor was about 10 months, Dr. Kreisel noted.
“One of the problems at that time was healing of where the surgeon connected the airway of the lung transplant,” he explained. “Then in 1983, Dr. Joel Cooper did the first of what’s deemed to be a successful lung transplant at the University of Toronto. That patient survived for six or seven years, and that is widely considered to have ushered in the era of modern lung transplantation.”
Dr. Cooper moved to St. Louis in the late ’80s and established a lung transplant program.
“That led to Washington University being one of the oldest and most established lung transplant programs in the world essentially,” said Dr. Kreisel. “We have people from all over the world coming here and watching the surgery, watching the whole process.”
The lung transplants in 1963 and in 1983 were both single-lung transplants.
Today the Washington University and Barnes-Jewish lung transplant program almost exclusively performs double-lung transplants, said Dr. Kreisel, although there are other programs that prefer to do single transplants for patients depending on their diagnosis.
“The thought is you can have one donor supply lungs to two recipients, because a lot of patients die waiting for a lung transplant,” said Dr. Kreisel. “Our philosophy has been that survival with two lungs is better than with one lung, and that has been the historical preference of our program.”