Advocate Undaunted by Lupus and Lung Disease

Rosemary Graham, of Atlanta, Georgia, is a longtime advocate for people with rare and chronic diseases. She was diagnosed in 2012 with pulmonary hypertension (PH) related to lupus, pulmonary fibrosis and sleep apnea. This is her story.

By Rosemary Graham

I’ve gone to my rheumatologist many times since September 1984 when my primary care doctor referred me for breathing issues and symptoms of arthritis and bronchitis. After that first visit, I ended up in the hospital with double pneumonia. I was there for a week. They released me with prescriptions and instructions to rest. The symptoms continued, and I was referred to a pulmonologist.

In November 1984, I saw the pulmonologist to get the test results. They were positive for systemic lupus erythematosus and interstitial lung disease. After high doses of steroids and other medications, I began to recover.

A year later, the symptoms returned, and I learned that I had polymyositis (poly-many, myo-muscle, itis-inflammation). After an increased dose of steroid, the symptoms slowly improved.

Two years later, the symptoms returned. My rheumatologist recommended me to the National Institute of Arthritis and Musculoskeletal and Skin Diseases for a double-blind white apheresis study. The researchers tried the apheresis procedure for six weeks, but it didn’t work well. They consulted with my physicians and sent me home to start immuno-suppressive medicine.

Embracing advocacy
After a bout of depression, I found the Lupus Foundation of America (LFA) Georgia Chapter Support Group and became an active member. I was eventually appointed to the board and later became the minority outreach coordinator and patient advocate.

I served on other national boards – National Black Women’s Health Imperative, LFA National Minority Outreach Committee, NIH Lupus Task Force on Lupus and the Black Women’s Health Study at Boston University and Howard University.

Eventually, I began working with the South Atlantic Conference of the Seventh-day Adventist Church, where I’ve been the regional disability ministry director for almost 22 years.

Throughout the years, my symptoms kept fluctuating. At one point, my cough was worse. I went through a bag of cough drops daily. I went to the pulmonologist. He listened to my chest and had me walk up and down the hallway with an oximeter on my finger. I was OK going down, but when I turned around, I had to stop. After I went back to the room, my doctor told me that my lung disease was worsening. He started me on two liters of oxygen.

PH unveiled
In December 2012, I had my annual appointment with the rheumatologist. During the visit I was dizzy, stumbling and coughing. When the doctor examined me, a puzzled look came on his face. He listened again and told me firmly, ‘’I hear a gallop sound in your heart. You have to get it checked right away! Go see your pulmonologist and cardiologist soon. I think it’s either congestive heart failure or pulmonary hypertension. Go!”

By the time I got to the car, I had an appointment to see the pulmonologist four days later. I also made an appointment to see a cardiologist.

I saw the pulmonologist first. He heard the galloping sound and sent me for tests. The cardiologist conducted tests and spoke with my pulmonologist. A few days later, he set me to the hospital for a right heart catheterization.

After Christmas, I received the test results. I was positive for PH. My pressure was 78. I had to increase the oxygen flow and get special medicine. A specialty pharmacy rushed me medicine for a week.

Three months later, I noticed a difference in my breathing and fatigue. My doctor advised me to lose weight and referred me to a nutritionist. With her help, I made a nutrition plan, counted calories and began losing weight. I went from 280 pounds to 215 pounds in three and a half years.

Cancer scare

In November 2017, I got the shocking news that I had endometrial cancer. Two months later I had a robotic laparoscopic radical hysterectomy.

My oncologist called a week after the procedure and excitedly told me that I had stage one, grade one cancer. I didn’t need to do chemo or radiation! I shouted from the bed. Six months later I had a heart catherization, which showed my pressures were in a normal range.

I’ve had lupus and interstitial lung disease for 36 years and PH for eight years. I’m still on oxygen and have fluctuating symptoms, but I’m alive. I am a PH warrior!

Does Rosemary’s story resonate with you? Inspire and give hope to the PH community by sharing your experience with PH. Submit your story here, and read more stories from PHA’s Right Heart Blog.

Rosemary Graham