A slew of medications and targeted treatments did little to alleviate her worsening symptoms. Two pulmonologists, an otolaryngologist, allergist, cardiologist, infectious disease specialist and her family physician seemed at a loss to explain why she wasn’t getting better.
It wasn’t until May 2018, when Multop suddenly collapsed in a doctor’s office and was rushed, near death, to a nearby hospital that the cause of her deterioration was revealed.
The protracted delay in treating her underlying illness, Multop discovered, had profound and lasting consequences. She likened the effect to “a bomb going off in my life.”
“I try to be a very understanding person but I still get very emotional when I talk about it, or look at the [medical] records,” said Multop, now 67. “I think all the doctors were thinking in their box, not out of it.”
Sinusitis or something else?
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 had been largely healthy. In addition to teaching classes at two campuses of Northern Virginia Community College, the Fairfax County resident worked full time 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. She began seeing the pulmonologist her friend recommended, logging about 18 phone calls and visits over the next year.
During her first appointment, the doctor 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 and ordered a follow-up chest X-ray. 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.
But her chest X-ray showed improvement. She said the pulmonologist told her he didn’t understand why she wasn’t feeling better.
“I believe her symptoms are all related to her underlying bronchiectasis,” he wrote. He prescribed another week of antibiotics and an aerobika, a device that resembles an inhaler and is used to clear the airways of mucus.
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 for a bronchoscopy. An invasive procedure that uses a thin tube threaded down the throat and into the lungs, a bronchoscopy permits inspection of the lungs and airways and allows a doctor to remove samples of tissue or mucus and to clear blocked airways.
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 percent, 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. The specialist also found no significant fluid around her lungs.
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. By late November, she felt better. A chest X-ray was clear and cultures showed no signs of a fungus.
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.
The pulmonologist was stumped. “He kept saying, ‘I don’t understand why you have so many symptoms when you have such a mild case of bronchiectasis,’ ” Multop remembered him saying. He sent more sputum samples for analysis and tweaked her growing list of medications.
Somehow, Multop said, she limped through the winter and spring, managing to avoid a recurrence of pneumonia. She said she told the pulmonologist that while wearing the therapeutic vest, she often coughed up watery fluid along with mucus.
“He said it couldn’t have been fluid, it was vomit,” Multop recalled.
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. In retrospect, she wishes she had gone.
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 percent 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 medevaced 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.
Recovery — and regret
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.
“I don’t know what the cardiologist saw,” Psotka said. “It’s hard for me to judge what happened here. To have an echo[cardiogram] that is interpreted differently by different physicians” is not uncommon, he added.
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.
These mistakes can be the result of common cognitive errors. Among them are anchoring, in which doctors settle on a diagnosis early and fail to consider alternatives. Such errors can be perpetuated by diagnostic momentum, also known as the “bandwagon effect,” in which the initial diagnosis is accepted without question.
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.
For now, she is teaching online rather than in a classroom because her immune system remains fragile.
“The fact that I have not seen her much means she has done wonderfully,” Psotka said.
Multop’s experience, he said, 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.”