Getting out of breath left me fighting for my life
For Marion Burfield, being breathless was a sign of bigger issues.
When I realised there was something wrong, I was working in the medieval town of Malmesbury in Wiltshire. It’s a hilltop town so I often had to climb the steep, stone steps to get to work. I realised that it was taking longer and longer to get to the top. I had to stop half way up to get my breath back. I even had much older people overtaking me.
I went to a ‘Well Woman’ clinic at my local practice where they referred me to the practice nurse. After seeing my GP, I went back to the nurse and it was then that I was recommended to try out an inhaler for a while.
When that didn’t make a difference my GP sent me to see a respiratory consultant at Royal United Hospital in Bath. She couldn’t determine what was wrong, so we spent months trying every avenue – including some chemotherapy – to see what would help.
When nothing made a difference I was sent to the Royal Brompton Hospital in London. They told me my life expectancy was two years. It was like an awful nightmare. I was totally shocked. I had incurable lung diseases and if medication didn’t work I’d need a heart and lung transplant. With the rate at which the fibrosis of the lung was progressing I didn’t have much hope.
How on earth was I going to tell my children? They were devastated when I did break it to them. They knew it was irreversible. I was really scared about the future and about my financial situation. What was going to happen to me and my loved ones? All this from feeling a little out of breath walking up the steps to work. I’m so glad I asked for help when I did – before it was too late.
How Breathe Easy has helped
In 2002 I was referred to a local pulmonary rehabilitation group at my hospital. For the next 7 weeks my eyes were opened to how exercise can help to build up my stamina and improve my quality of life. During the course, I was told about the British Lung Foundation and asked to go along to their local Breathe Easy support group.
I didn’t feel like it was for me at first, but as my confidence grew so did my desire to go along and meet other people who understand what I’m going through. It was so comforting. It was like a breath of fresh air.
Now, despite the severity of my illness, I’ve decided to have a really positive outlook on life. I love photography and trying out lots of different crafts and I’m preparing to celebrate my 60th birthday in September which is a milestone I thought I’d never reach.
Breathe Easy supports me by just being there. The feelings of isolation, depression and fear are made so much easier knowing there is somebody there for me. We meet every month and I really look forward to seeing friends, and listening to a speaker who can offer more support and advice. We make a mean cuppa, too!
Spreading the word
I’ve found that people don’t have great understanding about lung disease, its causes and effects, and respiratory problems in general. Because I’m not in a wheelchair people don’t think I’m disabled - they don’t realise that the restrictions put on my life are massive.
That’s why I feel so strongly about telling people how devastating it can be. I want to make sure people know more about lung disease. I want to help fund more research. I represent the BLF and Breathe Easy at the local patient participation group and I’m also a trust member of the local hospital. This all helps me spread the word.
My future is very uncertain – a transplant is now not possible because of other medical conditions. I cherish every day that I can sit back, look around me and see how lovely it is. I’m just happy to wake up every morning and see a new day, no matter how I feel.
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