St. Louis, MO (March 20, 2018) — Amanda Harvey-McKee’s life is the epitome of the notion that if you want to get something done, give it to a busy person. At age 39, she works 60 plus hours a week — often flying from city to city — in her job as a client services manager for a cancer registry company. She also squeezes a little gym time in a couple days a week. On top of that, she leads the Pulmonary Hypertension Association (PHA) St. Louis Support Group, whose members, like Amanda, are determined to live their best lives. This week, Amanda’s running last-minute errands for the group’s St. Louis Area Trivia Night, a PHA O2breathe fundraiser taking place this Friday, March 23.
Looking at her now, you’d never know that 12 years ago, Amanda was in a medically induced coma recovering from complications of surgery to remove a blood clot from her lungs. The procedure, pulmonary thromboendarterectomy (PTE), is a treatment option for chronic thromboembolic pulmonary hypertension (CTEPH), one form of pulmonary hypertension (PH) or high blood pressure of the lungs, which can lead to right heart failure and death. CTEPH can occur due to chronic blood clots in the lungs.
Symptoms of all forms of PH are non-specific and include shortness of breath, fatigue and chest pain. Consequently, people with the disease can go months, sometimes years, believing they have asthma or other less life-threatening illnesses — resulting in delays in proper diagnosis and treatment and costing valuable time.
Amanda was in her mid-20s, a busy bio medical engineering research lab manager, when she started experiencing severe shortness of breath. It was especially noticeable when she was volunteering as a coach for her friend’s daughter’s soft ball team. Her primary care doctor sent her to a pulmonologist who initially diagnosed her with allergy-induced asthma. Shortly after starting on an inhaler, Amanda began coughing up blood. Her pulmonologist believed she had bronchitis and put her on an antibiotic. On the advice of a coworker, Amanda asked for a CT Scan, which revealed the cause for her PH.
“The lab technician told me the radiologist needed to talk to me. I know only 10-15 minutes went by, but inside my head, I’m thinking everyone’s giving me that look. I finally said, I’m going home,” Amanda said. “That’s when the radiologist brings a nurse who brings a box of tissue. He said you have a PE [pulmonary embolism], a blood clot in your lung. You have to be admitted.”
During her time in the hospital, Amanda’s pulmonologist monitored her daily. He also introduced her to a young PH specialist who would later refer her to UC San Diego Health Center, a PTE leader. Because so little was known, even among clinicians, about the disease or the PTE procedure, Amanda wasn’t eager to undergo surgery and opted for observation. More than a year passed before she said OK to going to San Diego.
“By that time, I was in extreme heart failure. I got very sick; I had massive complications as a result,” Amanda said.
With the loving support from her newlywed husband and family, Amanda recovered from the complications. She regained her lung capacity, maintained by very low daily doses of blood thinning medication.
Today, Amanda is back to her busy self. Grateful for every day and every breath, she looks forward to her 17th wedding anniversary and 40th birthday in September. But first things first. She and her fellow St. Louis PHA support group members have a fundraiser to put on.
The St. Louis Area Trivia Night takes place Friday, March 23, 6 pm – 10 pm (CDT) at Orlando’s Banquet Center, 2050 Dorsett Village Plaza, Maryland Heights, Mo. Teams work together to answer 8 rounds of questions. The cost is $25 per person, which includes an open bar. The support group asks guests to bring their own snacks potluck dishes for everyone to enjoy. To register, please go to http://bit.ly/STLTrivia18.