John and the impact of the pulmonary fibrosis cough

John in a hat and T shirt in the sun

After diagnosis I noticed I developed a pretty much permanent wet, phlegmy cough which worsened as time went on.

The type of cough I’ve experienced has varied over the years since diagnosis.

The wet, phlegmy cough continued and worsened even with the steroids to the point where I was spending 40-60 minutes in the morning coughing and clearing my lungs and catching my breath.

I was finally prescribed supplementary oxygen and this has fortunately had a marked effect drying up the cough.

I still have problems first thing in the morning but it now takes 20 minutes to get going rather than an hour. There is usually another fit of coughing at night before laying down in bed.  During the day I will have episodes of coughing with any exertion –even something as minor as getting up from a chair. I can’t walk very far, just a few yards without severe breathlessness, and this usually brings on a coughing fit.

The coughing is distressing, especially the morning coughing fits, and knowing that this will happen every day. The breathlessness is frightening and I suffer badly from insomnia and anxiety. I went out for lunch with friends a month or so ago and that was very difficult as it was hard for me to walk.  

I felt vulnerable and uncomfortable around others when I had coughing fits.

I am pretty much housebound at the moment until I sell my first floor flat and get a ground floor or disabled accessible flat. I’ve been fortunate as far as work is concerned in that I have been furloughed for most of the pandemic but I will sadly not be able to return to work once the furlough scheme ends.

I’m fortunate to have a good support network of friends and neighbours as well as a good GP and nurse support.

I hope to support others going through similar experiences in the future.

There really needs to be far more research into cough suppressants along with better and earlier diagnosis of lung issues.  For me, cough management has come about with the steroids and the oxygen.

> Information on managing a pulmonary fibrosis cough

> Pulmonary fibrosis cough research