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Kristin

When I first learned that Sjögren’s Pulmonary Guidelines were being published, my first thought was, “Are these guidelines to help live with pulmonary complications or to recognize the symptoms of it? Either way, it will probably help a lot of people with Sjögren’s.”

I was diagnosed with Sjögren’s when I was 24 and have been living with it for nearly ten years. I was under the impression that all of my symptoms were well managed until one day the persistent cough I’d had for almost a year turned bloody. It was weird; because academically, I knew Sjögren’s could potentially impact my lungs but the focus had always been on managing my symptoms (dry eyes, dry mouth, and arthritis) and I had never really discussed or thought about the progression to other parts of my body and how that could manifest. I wish I had been more aware of signs to look for.

I actually have two separate pulmonary complications linked to Sjögren’s. The first is Lymphocytic Interstitial Pneumonitis (LIP) – basically, it means I had some fibrosing tissue that formed cysts in my lungs, and it may have saved my life. The theory is that the coughing caused a cyst to break free which caused my bloody coughing fit. They showed up as small spots on my CT scan which prompted more scans and then a lung biopsy. During the biopsy, the surgeon saw an area that looked “off” not related to the cysts and took a sample for good measure. It was Primary MALT lymphoma and it had been caught incredibly early. MALT lymphoma is a very rare variety of Non-Hodgkin’s lymphoma, but the majority of people that get it also have Sjögren’s. The lymphoma was actually the cause of the coughing, which had previously been dismissed by my primary physician as chronic allergies. If the cysts had not prompted my eventual biopsy, the lymphoma could have spread to multiple organs and become much more difficult to treat. I am, thankfully, in full remission.

The LIP actually has had a fairly significant impact on my life. I am an avid water sports enthusiast and lead a fairly active lifestyle. Due to the risk of a pulmonary embolism, I can no longer scuba dive and need to limit my depth to no more than about 9-10 feet. I also need to be very cognizant not to overexert myself when doing aerobic activities such as swimming, running, and hiking.

It is disappointing to no longer be able to do one of my favorite hobbies, but whenever I’m feeling particularly low, I remind myself that those same cysts served as an early warning system. Chest stretches and yoga breathing exercises before aerobic activity usually allow me to avoid serious impacts and complete most activities as I typically would. I’ve found that like most of my other Sjögren’s symptoms, there is a learning curve to management and once you reach the top of that curve, management just becomes a habit, and the impact on your life decreases. I think the key is to listen to what my body is telling me; with some adjustments, I can still do everything I normally would. I just go about it slightly differently. 

Click here to view the Sjögren's Foundation Pulmonary Clinical Practice Guidelines.