COPD changed my future, so I want to change the future of COPD

Carol loved working as a nurse, but when she was diagnosed with chronic obstructive pulmonary disease (COPD) she had to retire early. Since then, she’s committed to helping improve the lives of people with lung conditions. She hopes her knowledge and experience will help make a difference in lung health research.

I've just celebrated my 64th birthday and I've been retired for 13 years. This isn’t something I wanted to happen, but circumstances took that choice away from me.

I graduated as a teacher at the end of the 1970s. But I struggled to get a job, and so I retrained to be a nurse. As I progressed in my career, I became a sister on an elderly ward. As you can imagine a fair few of our patients had breathing problems. Little did I know that 30 years later, I’d be one of these patients myself.  

It seemed logical to use my earlier qualifications and so I found myself back in a school of nursing, this time as the teacher. It was the mid-80s and my interest in computing led me to introduce it into the curriculum. I can still hear a colleague saying, ‘nurses will never need that!’.

By the mid-90s, I was helping other nursing schools do their own online searches. And when the Internet arrived, I persuaded the head of school to let me set up our own website.

Getting the diagnosis (and learning to accept it)

In 2000 I moved to New Zealand, where I worked with the Auckland Medical School to move some of their teaching online. It was then that things came to a grinding halt. I became increasingly tired: I'd come home from work exhausted, I’d eat and go straight to bed. My asthma medication wasn’t helping. Eventually, I saw a specialist and was diagnosed with COPD with an FEV1 of 37%. After recovering from the shock, it became obvious to my partner and I that retirement was the only option. On my 51st birthday I retired.

Initially I was just glad of the rest as I was so worn out. But I also felt cheated. I was angry that this disease had taken away my career, my livelihood, our future. Grieving for the life you've lost takes its toll and can be very hard on those around you. I am so thankful for my partner for sticking with me. Acceptance eventually came along and I decided I needed something to do with my time. My lungs might be exhausted but I had a brain that still worked.

I wanted to do something to help other people with COPD

I was on my third pulmonary rehab course when it struck me that the course had a lot of information to share, but it was only reaching a few people. I persuaded the respiratory nurse and physio from the course, plus my partner, to jointly write a book for people with COPD to help more people see the benefits of PR and help to manage their condition. 2 years of working and writing resulted in Don't Forget to Breathe. We launched it as a free download and to date, it’s been downloaded over 100,000 times all over the world!

We came back from New Zealand 4 years ago and I got involved with the British Lung Foundation through their Facebook page. I’ve been on the Patient Action group and am now serving on the NHS England Long-Term Plan as a respiratory patient representative. I’ve also helped as a patient rep with the scientific committee and NICE. As a patient rep, I give feedback on how I feel the projects, programmes or research will affect and be received by people like me. It's good to feel useful, but to also know my experiences make a difference in lung health research.

Being able to help in this way is what keeps me going

It sounds like I lead a busy life and in many ways I do, but I have to be very careful not to overdo things.  A trip down to London for a meeting means an overnight stay and I’m usually out of action for 2 or 3 days afterwards. Sometimes, I’m not up to the journey and I join meetings through phone or Skype. It can be hard to be excited by an opportunity, but to have to be sensible and say: I can’t do this.

Make no mistake, this condition takes so much. When I have an exacerbation, life is grim, and it takes longer each time to pull round. However, being able to contribute to research in the hope of improving things for people with COPD, helps keep me going. I believe it is is important that we continue to research this disease, in the hope that it will lead to everyone one day having healthy lungs.


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28 July 2020