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The practicalities of living with oxygen: a perspective from a person living with COPD

npj Primary Care Respiratory Medicine volume 26, Article number: 15072 (2016) | Download Citation

Abstract

Although I welcomed oxygen into my life, it required a degree of adjustment and perseverance. The concentrator told all visitors that this was the home of a ‘patient’, and using ambulatory oxygen in public takes a lot of getting used to. Safe use of oxygen entailed some changes in routine activities, and travel needs to be planned ahead to ensure that I don't run out of oxygen. Despite its drawbacks, oxygen has enabled me to have a full and active life once again.

Although I welcomed oxygen into my life, it required a degree of adjustment and perseverance. My chronic obstructive pulmonary disease (COPD) ‘became visible’. The concentrator humming away in the corner of my lounge told all visitors that this was the home of a ‘patient’. It also meant I needed to turn up the volume on the television! The 25 m of tubing running through the house poses a trip hazard and gets caught up on door handles as I walk by. Cooking is fraught with danger because of oxygen-saturated hair and clothing, so I eat microwave meals and no longer use a hair dryer or any electrical equipment that could produce a spark or intense heat. Wearing a cannula can cause soreness around my ears or in my nostrils, and most creams that might remedy this are a ‘no-no,’ as oil-based creams are contraindicated because of safety concerns.

Showering is a joy now that I have the energy for it and have worked out how not to get tangled up in the process, and my sleep is much improved. I used to awaken every 2 h, but now I often sleep straight through.

I love my ambulatory liquid oxygen—it is my best friend. I don't drive and have no access to a car, so I walk many miles with it in a backpack. Make no mistake though, stepping outside wearing oxygen in public for the first time was one of the hardest things I ever had to do. It takes a lot of getting used to—that first time on the street, on a bus, in the supermarket or restaurant. I think patients could benefit from having ‘oxygen buddies’ with them on those first few occasions.

Travel needs to be planned ahead. On a day out, I need to be sure of distances and timetables to ensure that I don't run out of oxygen. Travel abroad is difficult but doable.1 The airlines require medical information forms to be completed by your GP, and each airline has its own list of ‘acceptable’ portable concentrators. Portable oxygen concentrators cost a great deal to hire or buy and add hugely to the cost of a holiday. Travel insurance is unaffordable for me now, so I go without it.

Despite its drawbacks, oxygen has enabled me to have a full and active life once again. Six years on oxygen, and a determination to live life to the full, has taken me from being virtually housebound to adventures such as speeding down a zip–wire in Cornwall (with my oxygen on my back!). See Figure 1.

Figure 1
Figure 1

The author speeding down a zip-wire with her oxygen cylinder.

References

  1. 1.

    European Lung Foundation. Air travel. Available at (accessed on August 2015).

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Acknowledgements

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The author declares that no funding was received.

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Affiliations

  1. European Lung Foundation, Sheffield, UK

    • Vanessa Smith

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Competing interests

The author declares no conflict of interest.

Corresponding author

Correspondence to Vanessa Smith.

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DOI

https://doi.org/10.1038/npjpcrm.2015.72