Doctors at Northwestern Medicine are trying to raise awareness about an often misunderstood and underrecognized condition called CTEPH, which stands for chronic thromboembolic pulmonary hypertension.
"Chronic thromboembolic pulmonary hypertension is a long-term complication after someone has an acute pulmonary embolism or a blood clot in the lung,” said Dr. Mike Cuttica, a pulmonologist at Northwestern Medicine.
For Patti Taska of Naperville, the symptoms started when she experienced shortness of breath in June 2020 while out walking her dog, Mack.
"After 100 steps I had to stop because my heart was racing, and I couldn't catch my breath," Taska said.
Taska went to her primary care doctor and then saw several other specialists.
“They ran all kinds of tests, lots of tests, over about a one-year period, but each one would say, 'Well, it's not the heart. It's not the lungs,'" Taska said.
A CT scan then found a mass in her lung and Patti was given devastating news.
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“Cancer stage three. And for a week, I had to wait for biopsy results to come in and it scared the death out of me,” Taska said.
But it wasn’t a tumor.
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"When the biopsy results came back, they showed blood cells, not cancer cells, thank God," Taska said.
She was referred to a team of specialists at Northwestern Medicine, who officially diagnosed her with CTEPH.
“It was a relief to know that there was a thing that was causing this, that it wasn't my imagination,” Taska said.
Dr. Mike Cuttica said CTEPH often starts with blood clots in the legs.
“They break off the travel up into the heart and they get pumped into the lung and they lodged in the blood vessels in the lungs, and that's when it becomes a pulmonary embolism or blood clot in the lung,” Dr. Cuttica explained.
Patti opted to have the blood clots in her lungs removed, which is done through open heart surgery .
“The entrance point is right next to the heart. So we're gonna have to use what's called the heart lung machine, which is cardiopulmonary bypass, in order to do the procedure,” said Dr. Malaisrie, her surgeon.
Dr. Malaisrie removed several clots, one of them several centimeters long. With them gone, Taska can truly breathe easier now.
“I can walk. I walk two and a half miles three times a week. I can climb stairs easily,” Taska said.
Taska hopes sharing her story may lead others to this underrecognized condition.
“A lot of patients get misdiagnosed for such things as asthma, which is much more common, but if you look in their medical history, a lot of patients will tell you that they had a clot in the past,” Dr. Malaisrie said.