More than two and a half years after undergoing a lung transplant, Jane Gross, 63, of Marion, IL, says she would have the procedure again “in a heartbeat.”
Since the operation, Gross has been able to “do about what I want to,” after years of being tethered to an oxygen tank and literally fighting for every breath.
“It took me a long time afterward to realize how good it is,” Gross said. “Sometimes it just creeps up and scares you that now you’re a different person.”
But both the path to having a transplant and her post-transplant health regimen have taken commitment on Gross’s part and a good support system.
According to her surgeon, Alec Patterson, MD, chief of the lung transplant program at Barnes-Jewish Hospital and Washington University, a patient’s commitment can be as important as the skill and expertise of the medical team in contributing to the success of a transplant.
“In your mind, you really have to want to do it,” Gross said.
Gross had been a smoker and was exposed to farm dust since she was a young child. As wife, mother and then grandmother, she was always active and healthy. But in her mid-50s, she began to notice that she was winded and tired after climbing stairs or walking long distances.
At first, she chalked it up to aging. But soon, her fatigue and breathlessness had increased to the point where she consulted her primary care physician, Jack Keller, MD, of Marion.
He immediately diagnosed her with chronic obstructive pulmonary disease (COPD) caused by emphysema, and started her on medication. He warned Gross that COPD is progressive and her condition would continue to get worse. He also told her that she might eventually need a lung transplant.
In the next few years, life changed dramatically for Gross.
“I was super active in my life before,” she said. “I rode horses and motorcycles. I did some hiking. And then that all came to a halt for about three years.”
The disease progressed relentlessly and eventually Gross found herself tethered to oxygen around the clock, on IV medication and too tired to go out of the house.
Luckily, Gross had the support of her family to help her through that time. She was especially cheered by her two grandsons, now aged 14 and six. Her oldest grandson even participated in her care, learning how to change her IV bags.
She also credits her husband, Hank, for taking good care of her.
“He’s a pretty good guy,” she said.
Finally, Gross came to Barnes-Jewish to be evaluated for a lung transplant. She was put on the waiting list for new lungs on March 1.
Patients who live more than two hours away from the hospital are asked to move to St. Louis so that they can get to the hospital in time to be prepped for surgery if donor organs do become available. Because Gross lives about an hour and 45 minutes away, she could return to Marion to wait for her transplant.
Gross found the idea of waiting for a transplant disconcerting. The idea of undergoing surgery and getting a new set of lungs “seems like something you read about in a book,” she said. And after the surgery, she would have to take medications for the rest of her life to prevent her body from rejecting the lungs.
But it had come down to a decision of whether she wanted to do whatever it took to keep living, or just give up.
“I felt I had places to go and things to do,” she said.
So she waited for the transplant – but not for long.
At 5 p.m. on April 26, 2007, she got the call that donor lungs were available. Gross called her husband, who was just leaving work. She grabbed the bag she had kept packed and they drove to Barnes-Jewish.
They decided not to call family until the surgery had started in case they had a “dry run,” where final tests determined that the donor lungs weren’t usable or were a better match for another patient.
Gross said that as soon as she reached Barnes-Jewish, all the fear and concerns she had had about lung transplant evaporated.
“As soon as I walked through the doors, I was no longer afraid,” she said.
The call had not been a dry run, and Gross received her new lungs that night.
Recovery from lung transplant can be bumpy. Gross’ recovery had up and downs. Shortly after she had been discharged from the hospital, she had an episode of rapid heartbeat and had to be readmitted briefly.
“It was kind of rough sometimes,” she said, “but it was never as bad as what I went through [with the COPD].”
The Grosses stayed in St. Louis for three months following the surgery, so doctors could fine tune her medication, and so she could undergo rehab and learn her medication protocol.
When she was finally cleared to go home, she jumped back into her “super active” life. A month after going home, the Grosses went to a wedding in Nashville.
“I really wanted to dance on the tables,” Gross said.
She now fishes regularly, drives her four-wheel ATV and feeds wildlife on their property.
But it’s doing routine activities, daily things that at one time left her exhausted and gasping for breath, that she finds most gratifying. Little things, like doing chores or taking a shower, make her thankful.
She is grateful to the physicians, nurses and transplant staff at Barnes-Jewish, her family who served as caregivers and, most importantly, to the donor family who made the decision to donate their loved one’s organs.
To express her gratitude and honor her donor, she has committed to taking the best care of her health as possible. She makes sure to follow her medication protocol, taking drugs at precisely the same time each day. She eats healthily, gets rest and exercises. And because her suppressed immune system makes her vulnerable to infections, she wears a medical mask in large crowds - as when she goes shopping with her six-year-old grandson who wears a mask in solidarity with her.
This makes her a model patient, says her transplant nurse coordinator, Carol Miller, RN. One of the biggest problems lung transplant patients face is developing chronic organ rejection. Not skipping medication and getting regular testing may help this complication, doctors say.
“This is a gift,” she said of her transplant. “You don’t throw it away.”
Gross also encourages friends and family to become organ donors by signing the back of their license.
She has also volunteered to be a transplant mentor for patients being evaluated for transplant or on the waiting list.
“I am glad to talk to anyone who’s thinking about it,” she said. “I tell them that I would do it all over again. But I let them know that you really have to want it to make it a success.”