• Anxiety and IPF

    Posted by Mark Koziol on April 1, 2019 at 4:03 pm

    When I was first diagnosed with idiopathic pulmonary fibrosis (IPF), I didn’t have anxiety when venturing out in public. I was using a portable oxygen concentrator (POC), and only using 2 lpm of oxygen on pulse. I went to work, visited family and friends, and went to other social outings. My medical condition changed when I contracted a respiratory syncytial virus, (RSV) and I had an exacerbation of my IPF. After a week-long hospital stay, I was now prescribed 4 lpm of oxygen at rest and 6-8 lpm of oxygen at exertion. My oxygen needs were substantially higher as I was now on continuous flow.

    Upon my return home from the stay at the hospital, I was unable to do simple tasks around the house and unable to go to work. I could barely walk 15 feet without breaking out into a coughing episode. My anxiety level was at an all-time high. Just the thought of getting up and walking to the restroom worried me. There were many negative circumstances I thought may happen to me. Up until this point in my life I was anxiety free. I was the one who didn’t let anything bother me. There were days I failed to eat anything except snacks until my wife came home.  She had prepared all the meals and set them in the fridge, but I found it mentally tough to walk to the fridge and place the meal in the microwave. I was terrified of another coughing episode.

    My coughing episodes were unpleasant and I was fearful of them. I also knew I would have to walk and move about in order to get healthier following the RSV. I felt more comfortable when my wife was home, there was less anxiety, and I felt more normal. She motivated and encouraged me to be active. I would not leave the house other than for medical appointments. This disappointed her, but I felt I could not leave the house safely. I did not want to be a spectacle in public as I bent over coughing and hacking.

    Several months had passed before I was cleared to go back to work. I felt the need to venture out. There was a new grocery store opening in the city near where I live. I knew if I went there I could drive the motorized carts provided for disabled persons. My mother-in-law, wife, and I loaded up in my truck and went to the store. I felt a sense of accomplishment by going to the store. My oxygen tank was placed in the food basket and it took me several minutes to get the hang of the machine but I felt good to be out in public. My anxiety would subside as I felt more comfortable with the disease. As I became “more normal” with my recovery, my outlook changed. I visited friends and family, went to the stores, started cooking, and participated in other activities.

    Have any forum members experienced anxiety because they were fearful of going into a coughing episode?

    Have any forum members chose not to participate in any type of activity because of anxiety?

    Mark Koziol replied 5 years, 1 month ago 3 Members · 4 Replies
  • 4 Replies
  • Warren

    April 2, 2019 at 9:31 am

    Yes and yes.

    Different story in that unlike you and over a period of 8 months, I have not been able to return to work or a “normal “ life. I remain on continuous oxygen at 4 to 8 lpm. I have survived, however, the perfect storm of a triple assault of Zoster, pneumonia and upper respiratory virus.

    Anxiety remains a constant and breath taking event. I do get relief by taking a very modest dose of Lorazepam.  Regardless, I focus on the positive and remain optimistic.

  • Mark Koziol

    April 2, 2019 at 11:42 am

    Warren, thank you for reading and sharing your experience. You have the right attitude. I guess I was fortunate to have a job where I was able to return to work. I could not have done it without the help of my co-workers. I have attached a column I previously wrote. The column was about about how I was treated by them. If you click on the highlighted word the column will appear. I have since received a lung transplant, although my anxiety was not as bad as before, it still exists. I don’t take anything for it, i try to stay busy and active. I sincerely hope you will be able to return to work. Please keep the faith and remain optimistic


  • Katie Bagshawe

    April 3, 2019 at 7:54 am

    Hello @mark-koziol ! This is a brilliant post and I believe anxiety will affect everyone living with a lung disease whereby exacerbations become a regular and frightening occurrence of illness. My Dad often struggled quite deeply with anxiety because he was terrified of his breathlessness and how distressing these episodes were for him. If it helps for anyone, here are some tips we picked up along the way from HCP’s and from trial and error.

    A few steps a time. Don’t panic about the bigger picture. If you need to walk somewhere or move around, then do it in bite size chunks. If Dad was moving around I would encourage him to do it in steps so standing up and staying put for a couple of minutes before walking. And then when walking taking breaks and having something to lean on (his wheelchair was a great tool to lean on when walking). If he had to fetch something from a room he would often consider what other things he might need so as not to make multiple journeys. This planning helped mentally prepare him to move around and ease the anxiety of something so simple as needing to go to the toilet without my support. Also I encouraged him to stay active (he didn’t need much encouragement as he was eager to do it himself) but something like making a cup of tea for himself or filling up his oxygen by himself.

    Breathing techniques. There are a variety of breathing techniques to help deal with exacerbation as well as panic attack like symptoms. Here are some tips that Physiotherapists gave Dad to ease his breathlessness. A little fan was also of use as the sensation of air moving around encourages a person to stay calm.


    Senses. I’ve found this through mindfulness but when feeling anxious, hone in on your senses and what’s around you. I always encouraged Dad to close his eyes and focus wholly on his breathing so he wouldn’t feel overloaded by everything going on around him. I also bought him a lavender scented hand cream so when he was really struggling I encouraged him to close his eyes and simply rub the lotion in his hands. Lavender is a great scent/essential oil for calming but the slow distraction helped him focus back on calming down.

    I hope these help!

    • Mark Koziol

      April 3, 2019 at 9:28 am

      Thank you Kate for reading and commenting on the topic. I think all of your suggestions are excellent. I am glad your father had such a compassionate caregiver in you. You are very knowledgeable on all aspects of pulmonary fibrosis. Being knowledgeable facilitated your strength when caring for your father. He was a lucky man to have you by his side, not all children are like you. Many persons afflicted with this awful disease go though this alone or with uncaring caregivers. I thank you for being a part of this forum. My column about how my family helped during a rough period was just published today.


      thank you again


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