Increased Coughing and the CF Smell

When you’ve lived around someone with an illness as long as I have, you start to learn the subtle changes in that person that flag a small alarm in the back of your head. It can be a small change in behavior or the slight discoloration of skin. Sometimes it can even be a feeling that you get when you are around the person – like something is just “off”.

As I kissed my husband goodbye this morning, that alarm lightly sounded.

It’s amazing how a simple kiss can alert you to a change in another human being’s body. No, I’m not talking about the passion or “change-the-world” type of kiss. I’m just talking about a simple quick kiss on the lips that you get when you leave someone you love.

It was the smell that caught my attention. My husband had just coughed moments before he kissed me and I knew the smell immediately. It was the smell of Cystic Fibrosis.

Now remember, my husband is a miracle double-lung transplant recipient of almost 7 years now. He is healthy as a horse and can run circles around me. His lung function is great and there is absolutely no sign of a cold. Just a simple smell that reminded me of kissing him when he had Cystic Fibrosis infected lungs.

The smell is hard to describe but I am sure that those of you reading this – that are intimately involved with a person with Cystic Fibrosis – know that smell. Each smell is different but there is also a smell as the bacteria in the lungs give off their own distinct smell.

The subtle smell had me take a step back, look him square in the eyes and say: “You smell like CF.”

I think it was his response that caught me off guard. He smiled and said: “OK. I’ll call the transplant coordinator and get a prescription for Cipro.”

After my quizzical look, he smiled and told me that he had a slight increase in coughing over the last couple of months but nothing to worry him. Since he can’t smell (thank to nasal polyps), he didn’t know that aspect was present until I told him.

It was no shock – just a signal to my husband to get a “tune up” for his miracle lungs. You see, the lungs are clean and good but the bugs from the mucus in his nasal cavity (pseudomonas) can easily make their way down to the lungs. The smell is a signal that things need to be cleaned out and keep those bugs from spreading and damaging his miracle lungs.

One might find it offensive to tell someone they smell bad but it’s important to be open an honest with those we love when they have an illness. Sometimes they just don’t realize there is something wrong until the one they love says something.

Being together for 16 years, my husband and I have learned to be open and honest about such things. This honesty and alertness has saved his life more than once.

After her husband received a double-lung (bilateral) transplant in 2004, Shannon founded the Angel Cove Organ Donation Awareness Shop, which provides awareness t-shirts and gifts products for transplant recipients, living organ donors and donor families - giving 100% of the profits to help heart and lung transplant recipients with medical costs. Shannon lives in Milwaukee, Wisconsin with her wonderful husband and two chocolate Labrador Retrievers.

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