Medical mystery: Her lungs seemed to be a mess. But they’re not what nearly killed her.
The protracted delay in treating her underlying illness, Gail Multop discovered, had profound and lasting consequences. She likened the effect to “a bomb going off in my life.”
Gail Multop vividly remembers her first case of pneumonia, which coincided with Election Day 2016. She remembers lying on her couch watching the returns in the hallucinatory grip of a 103-degree fever, which she said added to her sense of unreality.
Until then, Multop, now 67, had been largely healthy. In addition to teaching classes at two campuses of Northern Virginia Community College, the Fairfax County resident worked full time as an early-childhood education specialist in a child care center, where she was routinely exposed to a barrage of germs.
“I hadn’t been sick for a long time,” she said.
In May 2017, after being diagnosed with her second case of pneumonia in six months, Multop asked her family physician to refer her to a lung specialist. When he told her a referral wasn’t necessary, Multop asked a friend for a recommendation.
During her first appointment, the pulmonologist noted her persistent cough, which sometimes produced phlegm, as well as long-standing mild asthma. He ordered a CT scan, which showed sinusitis and mild bronchiectasis, a chronic lung disease caused by repeated inflammation and infections. The pulmonologist prescribed a new asthma medication.
Several weeks later, she was back in his office. Her sinuses seemed to have cleared, but her cough lingered. The following month, she returned with what looked like another case of pneumonia. The pulmonologist prescribed a second, more potent, antibiotic. Multop said she began to slowly improve.
Three weeks later she was back. She told the doctor her cough was worse, that she felt short of breath and was so tired she was taking two naps during the day.
“I believe her symptoms are all related to her underlying bronchiectasis,” he wrote. He prescribed another week of antibiotics.
He also referred her to an infectious-disease specialist. Maybe, he told Multop, a fungus or unusual bacterium was causing infections that didn’t respond to antibiotics.
A CT scan performed in October 2017 was worrisome, showing marked deterioration in six months. Swollen lymph nodes were visible in Multop’s chest, fluid had accumulated around her lungs and heart, and she had atelectasis, a partially collapsed lung that can be caused by tumors or mucus that blocks an airway.
Multop told the pulmonologist that she had intermittent chest pain, particularly when she lay down. She remembers asking the doctor whether her pain might be “heart related.”
He advised her to see a cardiologist and referred her to an interventional lung specialist.
The cardiologist performed a transthoracic echocardiogram, a common noninvasive test that uses ultrasound to create a video image of the heart. The test showed fluid around Multop’s heart and lungs, as the CT had indicated. But her ejection fraction, a measurement of how well the heart is pumping, was calculated at 64%, well within the normal range, and there was no sign of valve problems.
A bronchoscopy performed two weeks later revealed little. The interventional pulmonologist suctioned out large quantities of mucus, but found nothing else, including cancer, in the enlarged lymph nodes.
Based on these tests, Multop’s primary pulmonologist concluded that her chief problem appeared to be impacted mucus. He prescribed a wearable device called a SmartVest, which can help clear it.
The vest, which Multop donned twice a day, seemed to help. But the improvement was short-lived.
By early 2018, Multop remembers feeling “very tired and very short of breath.” Merely walking around the block required several rest breaks.
On May 1, she saw the pulmonologist for a worsening cough.
A new chest X-ray revealed possible pneumonia, which failed to respond to two antibiotics.
Although the pulmonologist had repeatedly advised Multop to go to the emergency room if her condition worsened, she was reluctant to do so. She said she didn’t want to sit in an ER for hours, as she had with her daughters when they were young, and was fearful of hospital-acquired infections.
On May 21, while sitting in the pulmonologist’s exam room with her husband, Ridge, Multop vomited, then collapsed. The doctor summoned 911 and an ambulance rushed her to Inova Alexandria Hospital, where doctors saved her life.
Multop was suffering from cardiogenic shock, a condition with a 50% mortality rate. Cardiogenic shock is typically caused by a major heart attack or the most severe form of heart failure, also known as congestive heart failure. Shock occurs when the heart cannot pump enough blood for the body’s needs.
Doctors quickly ruled out a heart attack and determined that Multop’s problem was advanced heart failure. Her heart probably had been failing for many months, the result of cardiomyopathy, which impairs the heart’s ability to function. The problem was not centered in her lungs.
Alexandria doctors stabilized her and she was flown to Inova Fairfax Hospital, where she spent nearly two weeks. There she learned that her relentless cough, fatigue, severe shortness of breath, chest pain, and excess fluid were all signs of a failing heart.
“Lung disease and heart disease are frequently confused,” said Mitchell Psotka, an advanced heart failure and transplant cardiologist at Inova Fairfax and part of the team that treated Multop. “These organs interact all the time.”
Psotka said it is not unusual to see a patient diagnosed with lung disease who is actually suffering from a cardiac problem.
“When heart failure is in its earlier stages, it is commonly missed,” he said. One reason is that the condition often develops gradually but insidiously. And a telltale symptom — shortness of breath — can be caused by a wide range of conditions including obesity and nasal congestion, he noted.
Did Multop ever have lung disease? That’s unclear, Psotka said. “She definitely had some lung damage, but that could be from chronic heart failure.”
“I think her lung doctor did the appropriate thing, which is to have a cardiologist evaluate her,” he added. An echocardiogram can show heart failure; it’s not clear why Multop’s was missed.
Multop lacked some of the usual risk factors for heart failure, including hypertension or diabetes. Nor did she have swollen ankles, a sign often used to detect or monitor the condition. (In her case, fluid was accumulating in her chest.) Doctors aren’t sure what caused her cardiomyopathy, Psotka said, but suspect the cause might be genetic.
Multop says she remains troubled that none of the doctors she saw seemed to question the initial diagnosis of lung disease or looked for other explanations after she did not get better.
“I just think they got lungs in their heads,” she said, and “that became the explanation for everything.”
Such mistakes are common and can be fatal. Diagnostic errors, studies have found, are likely to affect everyone at least once in their lifetime and have been estimated to result in the deaths of as many as 80,000 hospitalized Americans annually.
In Multop’s case, an accurate diagnosis was only the beginning.
Because her heart proved to be too badly damaged to function, she spent nearly seven weeks at Inova Fairfax last year, culminating in a heart transplant performed Oct 5.
“I’m so insanely grateful that I got a heart transplant when I needed it,” Multop said. She says she feels much stronger, and is able to work out with a personal trainer, but has less endurance than she did previously.
Psotka said Multop’s experience underscores an important lesson for both doctors and patients: “If things do not get better with the current treatment strategy, it may be that the correct disease is not being treated.”