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 an acute pulmonary embolism or blood clot in the lungs,” said Dr. Mike Cuttica, a pulmonologist at Northwestern Medicine.
For Patti Taska of Naperville, the symptoms began when she experienced shortness of breath in June 2020 while 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 GP and then saw several other specialists.
“They did all kinds of tests, many tests, over a period of about a year, but each one was like, ‘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 received devastating news.
“Stage three cancer. And for a week I had to wait for the biopsy results to come in and that scared me,” Taska said.
But it wasn’t a tumor.
“When the biopsy results came back, they showed blood cells, not cancer cells, thank goodness,” 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 something causing this, that it wasn’t my imagination,” Taska said.
Dr. Mike Cuttica said CTEPH often starts with blood clots in the legs.
“They interrupt the journey to the heart and they get pumped into the lungs and they lodge in the blood vessels of the lungs, and that’s when it becomes a pulmonary embolism or a blood clot in the lungs,” explained Dr. Cuttica.
Patti opted to have the blood clots in her lungs removed, which is done through open-heart surgery.
“The entry point is right next to the heart. So we’re going to have to use what’s called the heart-lung machine, which is cardio-pulmonary bypass, in order to do the procedure,” said Dr Malaisrie, her surgeon.
Dr Malaisrie removed several clots, including one several centimeters long. With them gone, Taska really can 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 can lead others to this under-recognized condition.
“A lot of patients are misdiagnosed for things like asthma, which is much more common, but if you look at their medical history, a lot of patients will tell you they’ve had a clot in the past,” said Dr Malaysia.