The transplant that's as tough as it gets
Instead of the three weeks she had expected
to be in the hospital, Antara Desai stayed at
Hopkins for four months while she was weaned
off the ventilator and pushed herself in
Ashish Shah isn’t prone to hyperbole or melodrama. But, says the cardiothoracic surgeon, the day Antara Desai was rolled into the operating room was most likely going to be her last day on earth.
By all appearances, the odds were stacked against the petite young woman who needed not only new lungs, but a new heart as well. Finding donor organs— an already unlikely accomplishment— had been further complicated by her tiny frame: At 5 feet tall and weighing less than 100 pounds by the time of her surgery, Desai was an extraordinarily difficult patient to fit with a heart and lungs. But, as she lay on the operating room table that day in February 2008, something happened that made finding new organs seem straightforward.
As the surgical team began removing her diseased heart and lungs, she began to swell—no surprise, given the complicated surgery. But as a result, the new heart and lungs didn’t fit. Shah had no choice but to leave Desai’s chest cavity open, cover the new organs with biological dressings, and wait.
Fortunately, over the next three days, the swelling subsided enough for Shah to close Desai’s chest. But the hard work wasn’t over—particularly for Desai, now 31.
The events that led her to the cardiothoracic transplant program at The Johns Hopkins Hospital began when, as a teenager, she was diagnosed with cancer and underwent radiation. Although the treatments defeated the cancer, they also damaged her lungs. In 2006, Desai began experiencing increasing shortness of breath due to fibrosis in her lungs. By 2007, she could barely walk without losing her breath and she became dependent on an oxygen tank. Meanwhile, the stress on her lungs increased the pressure on her heart, which also developed fibrosis. Her only chance was a double transplant.
Because Desai was so sick and the likelihood of success seemed so minimal, however, whether to approve her for a transplant at all was a difficult decision. At one point, she was removed from the transplant list altogether. “That day, my husband couldn’t stop crying,” she says. “I wiped his tears and said not to worry, that something was going to happen to make them put me back on the list.”
She was right. Shah remained an advocate and insisted that between Desai’s young age and her strong family support, there was reason to hope. So she was placed back on the active waiting list as a high-priority patient and eventually made it to the operating room.
For Desai, the hardest part came after the surgery. After months of relying on a ventilator, learning to breathe unassisted was challenging. There was physical therapy, and struggles to eat, and pain. Without the support of her family—including her mother, who traveled from India and stayed with her for 10 months, her sister, who took a semester off from school, and other family members who traveled from around the country to be with her—the experience would have been impossible to bear. “There was not a single day that I was alone in the hospital,” she says.
Today, back at work as a physical therapist, Desai has made a full recovery. She knows that her transplanted organs may not last forever and that she will need to be medically followed for the rest of her life. Still, she says, her life now is better than she ever imagined possible. “I was just so sick before,” she says. “I never would have imagined my life like this. I’m so grateful.”
The surgeon speaks: Teamwork and determination
Operations such as this one require a falling in place of circumstances that borders on the miraculous. Getting the patient on the transplant list, finding the right donor, getting through the surgery— it all requires more than able hands. Cases like Antara’s prove that, like it or not, success is left, at least in some degree, to chance.
But not entirely. This transplant could not have been successful without the interdisciplinary cooperation and hard work of multiple units—cardiac intensive care, medical intensive care, physical therapy, pulmonary care, nursing; They all played critical roles in making sure this operation was as safe and successful as possible. However, perhaps no one played a greater role in Antara Desai’s success than Antara Desai.
Throughout her time with us—both before and after the transplant—Antara demonstrated a level of strength and perseverance that was second to none. Those traits—coupled with her optimism and positivity—proved vital to her recovery.
This is a very difficult, uncommon and dangerous surgery. Hopkins performed its first heart-lung transplant in 1983, and since then, we’ve done only about one per year. The risks are substantial: Long-term life expectancy is about 50 to 65 percent, and almost 20 percent of deaths occur in the first year.
Antara, however, made it. Of course, with all transplants come life-long surveillance and medications to prevent organ rejection. Without the surgery, however, Antara most certainly would have died. And, despite everything, she came through the surgery and left the hospital with her personality, her optimism and her spirit intact.
To discuss a case or refer a patient call +1.443.287.6499.