“Although having CTEPH has caused me a lot of pain, sadness and anger, it has allowed me the opportunity to meet such amazing, supportive, people through conferences and support groups. These wonderful people gave me the hope and strength I needed to beat this disease.”
by Jamie Prettner
“I was diagnosed with pulmonary emboli in May 2016 as a result of using birth control. I was hospitalized for four days, as the severity of the emboli was causing significant right heart strain. When I was released, I was put on supplemental oxygen and blood thinners. Approximately one month later, I was able to get off supplemental oxygen and in December I had a follow-up CT scan that showed the emboli had resolved. I was told I could discontinue taking blood thinners as well. I was still experiencing significant shortness of breath, however, as well as fatigue.
“In February 2017, I was referred to a pulmonologist who had me complete a VQ scan. The scan showed that I had chronic thromboembolic pulmonary hypertension (CTEPH).
“My pulmonologist told me the best treatment for CTEPH is a surgery called a pulmonary thromboendarterectomy (PTE), an extensive surgery that takes roughly eight hours. During surgery, you are put on a heart-lung bypass machine and your body is cooled down to about 68 degrees to protect the organs. Blood circulation is then stopped periodically — up to 20 minutes a time — in order for the surgeon to get into the pulmonary arteries and remove the chronic clots. After all the clots are removed, your body is warmed to normal body temperature.
“Due to the rareness of this disease, there were only two places in the country that performed the surgery. After some research, I decided to have the surgery at the University of California-San Diego. My mother and I arrived in San Diego July 22, 2017, I had a successful surgery August 1, and was released from the hospital August 10.
“I was grateful that PTE surgery actually cured my CTEPH. While I will always have inflammation and pain from surgery, and will be on blood thinners for the remainder of my life, I know that it is nothing compared to what PH patients go through on a daily basis. I am extremely grateful to have my life back. Although having CTEPH has caused me a lot of pain, sadness and anger, it has allowed me the opportunity to meet such amazing, supportive, people through conferences and support groups. These wonderful people gave me the hope and strength I needed to beat this disease. I will continue to volunteer my time and resources to help PH patients fight this difficult disease. ”
Jamie Prettner with her surgeon, Michael M. Madani, M.D., F.A.C.S.
