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Granulomatous and Lymphocytic Interstitial Lung Diseases (GLILD) is something that many people haven’t heard of. I had no idea until I was diagnosed with it. I imagine that is the case for many others that receive the same diagnosis. It can be very confusing and scary!
A little disclaimer here: I am not a medical professional, so my knowledge is limited. I am hoping to share my experience to create a wider understanding and create awareness about this disease, which affects approximately 20% of CVID patients.
An introduction to GLILD
According to an article from the National Library of Medicine , GLILD is “a severe non-infectious complication of Common Variable Immunodeficiency (CVID), often associated with extrapulmonary involvement. Due to a poorly understood pathogenesis, GLILD diagnosis and management criteria still lack consensus.”
I regularly visit with a pulmonologist who helps me monitor my symptoms, which includes many pulmonary function tests and CT scans.
This lung disease can be found through lung function tests and CT scans, which is how I was diagnosed. It was discovered a couple of years after my initial CVID diagnosis.
How is it treated?
Once I found out about my GLILD diagnosis, I was told that I’d be starting a Rituximab treatment and take daily medication.
I started on Azathioprine, but it really upset my stomach. When I told my doctor about the negative side effects I experienced, he told me that I could switch to Mycophenolate. So far, I haven’t had any problems with is.
The Rituximab treatment consisted of going to the doctor’s office on two separate occasions to receive an IV for about 6-7 hours. These occasions were about 3 weeks apart.
It’s not a super fun time, especially because you have to sit there for so long, but overall it wasn’t too bad. This treatment actually helped decrease the size of swollen lymph nodes all over my body as well. It had a really helpful, long lasting impact on my case of GLILD and I haven’t had to receive the treatment again. It’s been a little over a year, so I probably will have to get it at some point.
Understanding my illness
I still feel a little lost sometimes. Receiving a diagnosis like this can be very confusing, because my mind can’t always grasp these concepts. I was never good at science, and some things don’t always make sense to me.
But, I knew that when I heard about GLILD, I was going to have to trust the process. I need to leave it up to the medical professionals to help me decide what is best for me.
My pulmonologist tells me that I need to continue working out in order to help maintain a healthy lung function. Although I feel really tired most days, I try to get out and walk, jog, play tennis, or go on the rowing machine. When I get some cardio in, it’s good for my lungs.
It scares me to think about my lungs declining. Right now, I am feeling pretty good, but I know that it could get worse at some point. Back in early 2022, I got COVID, and it was really hard on my lungs. I felt like it took a couple of months for me to feel like my lung function was back to normal.
CVID can lead to other health complications
As a patient with CVID, it is important to understand that there are higher risks for developing some diseases including autoimmune disorders, blood disorders, digestive disorders and cancer.
But, I don’t believe in leading with fear. Life with a chronic illness can be uncertain, but I have to remind myself not to be overcome by the fear of the unknown. I really love this quote from author H.P. Lovecraft:
GLILD was a surprise for me, but I don’t feel like it has had a hugely negative impact on my life. It may have added some more complications, but I find it very manageable, and I became comfortable with it very quickly.
I just have to make sure to stay really up to date with my health, especially when it comes to scheduling appointments and tests. That way, I can get ahead of whatever comes my way!
If you are recently diagnosed with CVID and/or GLILD, feel free to reach out if you are in need of support.