The Difference an Early Diagnosis Makes
In August of 2004, at the age of 34, I decided to take a taekwondo class with my children. I was a bit out of shape, but nothing too bad. As the class progressed into the spring I began to notice that I was getting more out of breath and occasionally dizzy during my workout. It seemed odd that after several months of exercise I was more out of shape than when I started, so I scheduled a physical with my general practitioner in March.
My general practitioner didn't think it was anything serious, but he is always willing to look deeper. He decided to run an electrocardiogram (EKG) just to err on the side of caution. He discovered a right bundle branch blockage, which he said was probably unrelated, but just in case he ordered several additional tests and referred me to a cardiologist.
When I saw the cardiologist I was essentially told that I was middle-aged, overweight and a hypochondriac. However, the cardiologist did say he wanted me to follow up with him in three months, in June, just to be sure. I nearly skipped that appointment.
During those three months my symptoms didn't get any worse, so I was not concerned. I didn't have any symptoms except when I worked out. At the follow- up appointment the doctor did a brief check-up EKG and was literally about to send me on my way when, after reviewing my initial test results, he said, "Let’s do one more test while you are here." He took me to the back and they did another cardiac echocardiogram. Suddenly the doctor said, "I know exactly what you have. It's called pulmonary arterial hypertension." The new echo showed that the right side of my heart was enlarged. This had not shown up three months prior. What he saw on the original test results were the pressures from the echo with the statement "mild pulmonary hypertension (PH)." At this point he told me to return in two weeks. In the meantime I was told not to exercise and to spend most of my time in bed resting. I thought this was crazy. I felt great. I only got winded when I worked out.
When I returned after two weeks the cardiologist told my husband and I that I needed to get my affairs in order and that I should not expect to live beyond another 2-2 1/2 years. With that, he ordered more tests and told me to return in another two weeks. During this time I did my own research and decided that I needed to see a specialist. When I returned two weeks later I requested a referral to see a doctor at the University of Chicago. He seemed relieved.
I was able to get an appointment quickly and was seen at the University of Chicago in early August. The doctors there confirmed my diagnosis via a right heart catheterization and, after ruling out the possibility of CTEPH with a ventilation perfusion (V/Q) scan, put me on sildenafil, which had just become available. At this point, since I was still not experiencing daily symptoms, I was encouraged to resume exercising, as long as I didn't get short of breath. I chose to swim laps and work out on the treadmill. After one year of sildenafil, my pressures had gone up, so I was placed on intravenous treprostinil. Although I still wasn’t experiencing any symptoms, my PH doctor was very proactive with treatment, something I now appreciate. I continued with the intravenous treprostinil until January of 2012 when I was fortunate to be able to participate in the implanted pump trial.
As time has passed I’ve been fortunate to remain well enough to continue an active lifestyle. In January of 2013 I started taking kickboxing classes three days per week and that summer I participated in the Register's Annual Great Bicycle Ride Across Iowa (RAGBRAI), a non-competitive bicycle ride that runs from west to east across the state of Iowa, 406.6 miles from start to finish. There were only three or four hills that I had to get off my bike and walk up, but I didn't feel bad as there were many others who were doing the exact same thing. Otherwise, I rode the entire way, along with one of my friends. It was such a great experience!
Due to the early diagnosis of my pulmonary arterial hypertension and my doctor’s proactive approach to treatment, 12 years after my diagnosis, I work full time as a high school teacher, exercise regularly, and am virtually symptom-free. This summer I, along with two other science teachers at my school, will be taking the students on a week-long trip to Puerto Rico.
I am grateful that early, accurate diagnosis has allowed me, rather than PH, to call the shots in my life.