Dear Smile E.,
I recently complained to the PCD specialist about my son’s constant wet cough, runny nose, and ear drainage. I was hoping that he’d give me something to dry this all up. Even after I insisted he said, “No, we want wet, runny, and draining in PCD.” I left not completely understanding his reasoning. I’m just wanting my son to not have to worry about embarrassing mucus around his friends. What do you suggest? And what is your take on why wet coughs, runny noses, and ear drainages is considered a good thing in PCD?
Singed,
Concerned Mom
Dear Concerned Mom,
First off, as always, remember I’m not a licensed physician; and I strongly suggest that you revisit this topic with your son’s care team at your earliest convenience. Perhaps call your specialist’s office and ask to speak with the specialist’s nurse. The nurse should be able to direct you to someone who can throughly explain the specialist’s thoughts on this issue. Never be afraid to repeatedly ask questions and ask for clarifications when you don’t understand something completely. As patients and families sometimes we can get overwhelmed with information, especially if it’s new information, during appointments; our care team is very familiar with this confusion. If you’re finding yourself overwhelmed consistently, it may be a good idea to take along another person to your visits. This person’s sole responsibility would be to take notes, ask for clarifications, and so on; so they can help answer your questions later on.
Secondly, even though I’m not a doctor, I agree with your specialist’s take on not prescribing something to dry your son’s mucus up. A wet productive cough is better than a dry one. It means mucus is moving, even if by coughing or the use of airway clearance techniques. Mucus that sits can become breeding grounds for additional infections. In PCD if we dry out the mucus, the mucus becomes thick and sticky, and is even harder to move out of the airways even with actively doing airway clearance. So you end up with stuck mucus that can’t move, and this causes the body to make even more mucus. So trying to dry out the mucus is actually counterproductive in my opinion. Also this stuck thick mucus that is dried out can lead to airway damage and even bronchiectasis. As far as the runny nose, same thing applies; you want it to run and move those secretions out of the sinuses. I find sometimes that my sense of smell has returned when my nose is running. As far as the ear drainage, I know it’s a pain but it’s better draining than being too thick to move that it gets stuck in the middle ear, where it builds pressure, causes hearing deficits, and more.
And I know mucus is embarrassing, I get it, honestly I do. I find myself sometimes as an adult hiding my cough from others; it’s totally embarrassing, especially meeting new people. Unfortunately it’s a part of PCD and will be with us throughout our lives. Eventually you, as a patient, learn to deal with it. You figure out things to say when someone gives you a nastiest look or two. In totally honesty I never realized until I read a paper my counter part was reading that said patients in the study who covertly coughed for privacy had a greater risk for contracting organisms like pseudomonas and nontuberculosis mycobacteria than those patients who didn’t covertly cough. After reading that study, I’m not so worried anymore about what others think about me in regards to my coughing to manage my PCD.
Yours Truly,
Smile E. Turtle
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