CLEVELAND, Ohio – It's a rarely-heard of condition that stops people in their tracks .
Including Peggy Notman.
Her lungs started keeping her out of work and in the house.
"I was walking my dog and I was totally out of breath."
When her first grandchild was born, Notman knew something had to change.
"I want to see that baby grow up and be able to see every grandchild that comes along. And I want them to know me. Not just know me by pictures."
After years of misdiagnosis, doctors discovered Notman had CTEPH.
"Chronic thromboembolic pulmonary hypertension is high blood pressure in the lungs due to chronic blocked lungs," explained Dr. Gustavo Heresi, medical director of Cleveland Clinic's Pulmonary Vascular and CTEPH Program.
CTEPH is high blood pressure in the lungs caused by blood clots.
The definitive treatment for CTEPH is a delicate surgery called a pulmonary thromboendarterectomy (PTE), also referred to as a pulmonary endarterectomy. This surgery is done while the heart is stopped, and a heart-lung bypass machine does the work of the heart and the lungs.
Doctors say it is an under recognized, under diagnosed disease, causing fatigue, trouble breathing, lightheadedness, and passing out.
At one time, the only effective treatment was surgery, but that's not an option for 40% percent of patients, including Notman.
That's when doctors from the Cleveland Clinic told her about balloon pulmonary angioplasty or BPA.
"And we're able to go in there with catheters, wires and balloons and with x-ray and ultrasound guidance we're able to get in find the webs that are associated with chronic pulmonary hypertension from chronic PE's and basically open them up to optimize the blood flow," said Dr. Ihab Haddadin, an Interventional Radiologist at Cleveland Clinic.
NEW TECHNOLOGY: Researchers collected and analyzed data from 308 patients who underwent 1,408 procedures at seven institutions in Japan. Blood pressure and blood flow were found to have improved significantly in 249 patients who underwent BPA. Improvements of blood flow were maintained in 196 patients who underwent right heart catheterization during the follow-up period. The need for oxygen supplementation and PH-targeted therapies also decreased. The researchers note that overall survival rates after BPA are similar to the standard PEA treatment. Overall survival after the initial BPA procedure was 96.8% at one and two years. At three years, it was 94.5%.
Notman needed repeat procedures. She noticed a difference after the second procedure and a big change by the sixth one.
"Now I can go out and do things that I need to do, that I want to do and feel confident that I'm not going to pass out."
The ideal candidate for B-P-A is a CTEPH patient who has clots that are too small and are beyond the reach of surgical instruments. Dr. Hadadean says the benefits increase with multiple procedures.
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