When I found out that I had bronchiectasis, it was terrifying because it’s a condition that up until that point in my life, I had never heard of. It was overwhelming because I began to find out scary details about it. I started down this unknown road and I did not know what to expect.
Bronchiectasis is a progressive condition that occurs when the airways become “damaged, causing them to widen and become loose and scarred,” according to the National Heart, Lung, and Blood Institute. This damage makes it difficult to clear mucus, creating an environment for recurrent infections. As we celebrate the inaugural World Bronchiectasis Day today, I felt it was important to spread awareness by sharing my struggles with this condition.
Bronchiectasis only added to my CF worries. It was something that wasn’t going to stop hurting me and made me anxious about the future. At the same time, I also felt a sense of relief because I like to have answers to everything and I keep fighting until I get results. I really do not mess around when it comes to my health. Cystic fibrosis is a constant force in my life that needs attention and care — and that was what bronchiectasis became for me.
I had bronchiectasis in my right lower lobes and had irreversible damage. That explained why I was constantly getting lung infections. I was very unwell, and I struggled to walk far without gasping for air. The pain was terrible and it was a pain that would not fade. Not only did I have to deal with the fact that I was diagnosed late with CF, but that my CF had progressed enough to where my bronchiectasis was here to stay. It was devastating. I had to mentally get a grip and ask myself, “Where do I go from here?”
It was difficult to comprehend those diagnoses and my predicted survival rate. One thing my doctors made clear to me was that I could die, or I could suffer more complications because I did not receive medical intervention earlier. My life at that point became a huge variable of unknowns and what ifs.
The one thing I knew was that I needed to get healthier, and I was not prepared to give up without a fight.
CF is life-altering because it requires so much planning to go about my day. Adding bronchiectasis was also stressful, but I learned to manage both my CF and bronchiectasis in a way that now it’s second nature to me. I had to become acutely aware of my body and my lungs. I had to learn to recognize what lung pain was normal and what wasn’t, what breathing patterns indicated an infection, or what breathing patterns were normal for me.
Mucus became this huge deal because I had to learn what was considered typical for me to indicate something else brewing in my lungs. I learned everything about my mucus, including the consistency of it — was it too thick? too watery? too clumpy? — the color — was it brown, yellow, white, or bloody? — and even the taste. As gross as it sounds, mucus changes in taste when you cough it up and that was also an indicator for me.
As I became one with my body and recognized what was normal or what was indicative of an infection, I gained a sense of control, which allowed me to feel confident that I could handle it. It’s been about nine years since I was diagnosed with bronchiectasis, and I am proud to say that with hard work and help from my care team it has progressed minimally and I am healthy at this stage of CF and bronchiectasis. Never give up on yourself. CF and bronchiectasis are frightening, but they’re not impossible to fight.
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