Looking back, I think I first saw the warning signs of having pulmonary sarcoidosis in 1994. I had always been active — I would often walk on my lunch breaks at my job. But then I started to have trouble catching my breath. I would get winded carrying groceries up the stairs. Or I would be talking to someone on the phone, and they would say I sounded winded.
Then in 1995, when I was 40, I suddenly got sick. I was vomiting often and getting very dehydrated. I started seeing a gastrointestinal (GI) specialist, thinking something was wrong in my digestive system. At one point, after a GI test, I ended up in the emergency room because I couldn't keep any fluids down. Doctors there ran a battery of standard tests, including a chest x-ray that revealed abnormal areas on my lungs.
Follow-up tests confirmed that I had sarcoidosis. It meant my immune system was creating clusters of cells in my lungs called granulomas. I learned that sarcoidosis can affect the whole body, and that my digestive problems were likely related to the effects the condition was having on my nerves and hormonal system.
My doctor explained to me that no one knows exactly what causes pulmonary sarcoidosis. But the result is that the immune system overreacts to infections or substances in the environment. Sarcoidosis happens more often in women and African Americans, which could have contributed to my risk. While the disease can run in families, that was not the case for me.
Seeking world-class care from sarcoidosis experts
My condition was manageable for a while. However in 2017, I could tell something wasn't right. Along with shortness of breath, I was coughing a lot and had to sleep sitting up at night. I saw different doctors about my condition, but I felt like more could be done to help me.
One day, while researching pulmonary sarcoidosis online, I came across a National Institutes of Health website that mentioned the Sarcoidosis Program at the Temple Lung Center. Only a handful of centers around the world are recognized as a Sarcoidosis Center of Excellence. The Temple Lung Center is one of them. So I called to make an appointment.
At Temple, I saw Rohit Gupta, MD, a pulmonologist and director of the sarcoidosis program at Temple. Dr. Gupta listened to my concerns. He was caring and, of course, very knowledgeable. I had a lot of questions and he took the time to provide thorough answers. I told Dr. Gupta that I had done my own research online and was concerned I might have pulmonary fibrosis — permanent scarring of the lungs due to the sarcoidosis. He ran tests to find out what was going on with me. Those tests confirmed that I did have pulmonary fibrosis.
Since Temple is a teaching hospital, its physicians stay up-to-date on the latest treatments and that knowledge benefits me and my condition. For instance, Dr. Gupta prescribed a medicine that helped reduce the inflammation in my lungs so that it was easier for me to breathe. No one had ever suggested that treatment to me before.
Managing my health over the years
I go back to Temple regularly to be tested and make sure that I’m not developing new complications. Dr. Gupta helps me stay on top of my medicines. Recently, for example, he helped me adjust a medication that suppresses my immune system so that my COVID-19 vaccine would be as effective as possible.
There isn’t a cure for sarcoidosis yet, but you can live with the condition. And that’s what I’m doing. Yes, I still get short of breath, especially when I climb stairs or bend over. However, I have learned to manage my symptoms better. For one thing, I take my time with tasks. I also avoid things that irritate my lungs, including polluted air. That’s why I let my daughter do the barbecuing when we have cookouts, because I can’t be around the smoke.
I’ve also learned ways to make the most of my lung function, like practicing pursed-lip breathing, where I breathe slowly in through my nose and out of my mouth. And sometimes I have to remind myself to breathe — for instance, when I bend to pick up something from the floor.
In Temple’s pulmonary rehabilitation program, I took part in exercise training. I try to stay as active as possible. At home, I play some gospel music or sometimes the oldies. I have a great time, and it gets me moving around. It’s also a great way to lift your mood - you can love music and it loves you back.
Finding strength in the sarcoidosis community
It also helps to know I’m not alone. Dr. Gupta told me about a sarcoidosis support group at Temple Health, which I attend regularly. Sometimes you learn things that other people are doing that can help you cope with sarcoidosis. Various medical experts join our group meetings as well. For example, a nutritionist talked to us about the importance of eating well.
My advice to other people who have pulmonary sarcoidosis? Get the care that is right for you, and don’t put it off. I’ve got the best doctors. The care I receive at Temple has helped make managing my condition a lot easier. You know that someone cares. You know that they’re knowledgeable, and that they can help you.
Ready for an appointment?
See a sarcoidosis specialist at a Temple Health location near you. Call 800-TEMPLE-MED (800-836-7536) or request an appointment.