OUR JOURNEYS

Patient story

Kathy Morton

"When I returned after two weeks the doctor told my husband and I that I needed to get my affairs in order since I had a life expectancy of 2-2 1/2 years. 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 I requested a referral to see a doctor at the University of Chicago. He seemed relieved."

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 it progressed into Spring I began to notice that I was getting more out of breath and occasionally dizzy during a workout. It seemed odd that I was more out of shape after several months than I was 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 EKG just to err on the side of caution. He discovered a right bundle branch blockage. He said that it 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, he 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 he went back and reviewed 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 echo. He stood there and said "I know exactly what you have. It's called pulmonary hypertension." The new echo showed that the right side of my heart was enlarged. This had not shown up on my echo three months prior. What he saw on the original test results were the pressures from the echo with the statement "mild pulmonary hypertension." At this point he told me to return in two weeks. In the meantime I was not to exercise and to spend most of my time in bed resting. To me I thought this was crazy. I felt great. I would just get winded when I worked out.

When I returned after two weeks the doctor told my husband and I that I needed to get my affairs in order since I had a life expectancy of 2-2 1/2 years. 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 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 in early August. At the University of Chicago they confirmed my diagnosis and put me on Revatio, which had just become available. At this point 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 revatio, my pressures went up so I was placed on subcutaneous remodulin. I was still not having symptoms, but my PH doctor is very proactive in treatments. I continued with the subcutaneous remodulin until January of 2012 when I was fortunate to be able to participate in the implanted pump study.

In January of 2013 I started taking kickboxing classes 3 days per week and I have just registered to participate in RAGBRAI, a bike ride across the state of Iowa in late July. Due to the early diagnosis and my doctor’s proactive approach to treatment, I work full time as a high school teacher, exercise regularly, and experience a virtually symptom-free life.

Early diagnosis has allowed me to call the shots in my life, rather than PH.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.