“Then the fear kicked-in with immediate flashbacks to my father’s death from the same disease thirty years ago.”
Anne was diagnosed with IPF in November 2012. She is an inspiration to others through her determination to live her life to the full and says, “You could spend life focusing on negative or go out and live your life to the best you can.”
Anne continues to work part-time as Assistant Director HR/OD Performance at Liverpool Royal University Hospital as well as volunteering as a Magistrate and School Governor at St Peter’s in Orrell. She is currently part of a clinical trial for a drug to treat pulmonary fibrosis. Her daughters Louise and Jenny are passionate fundraisers for Action for Pulmonary Fibrosis raising over £2,000 to date.
Anne talks about the disease, the day to day challenges she faces and her determination to make the best of each day.
What were the early signs that you might have IPF?
I was feeling unwell with a heavy cold and feeling breathless. I just assumed I had a ‘low grade pneumonia’ but it gradually got worse – I was finding it hard to speak and catching my breath. I felt exhausted and was gasping for breath after walking a short distance.
How did you find out?
One of my colleagues at work suggested that I get checked out, perhaps have an x-ray, so I was examined at work (I work in a hospital) and had the usual bloods/x-rays. After a few weeks the symptoms didn’t go away so an MRI was ordered. I was then told I had extensive lung changes that would require a lung biopsy but it was almost certain I had Idiopathic Pulmonary Fibrosis.
How did you feel when you received the diagnosis?
It never entered my mind I would have anything serious – I thought it was a chest infection and I’d be prescribed with a course of antibiotics. It really came out of the blue and was a massive bombshell. My husband Tom collected me as usual from the hospital and I held the news in until we returned home and then told my family. It was the hardest thing I’ve ever had to do.
I was in state of shock for a while and felt isolated as there’s so little awareness of the condition. You hear so much about Cancer but rarely about lung conditions. The first thing the consultant said was don’t look on the internet. I couldn’t stop myself taking a sneaky look and it really was the worse thing to do. All you read is the negative aspects.
What was the impact knowing and seeing your father with IPF?
Initially one of utter terror remembering seeing him trying to cope with life being unable to breathe and enjoy any of his retirement, having worked so hard all his life. But gradually you start to put it into context. It was 30 years ago, oxygen was thought not to help at all, disabled access or mobility scooters were unheard of. A very fit and active man quickly became a week housebound old man.
How do you manage day to day life?
I’m lucky to have been in work all my life – today it’s both a challenge and a life-saver. It keeps my mind active. In terms of challenges; I have to plan with military precision my movements around the hospital and any travelling I have to do. I need to have oxygen with me and often my mobility scooter. If I go out with friends I have to plan the route to check there are benches on the way for me to stop for a breather.
This disease is terribly frustrating. There’s so much I want to do. Not long ago I would have run around. Now a half hour trip needs several pit-stops. It’s do-able but have I have to plan. I’m determined and always searching for a way round! I do have black days but I also have a good outlook on life and an incredibly supportive family.
What’s your advice to anyone who has just received a diagnosis?
Don’t look at the internet, it’s all bad news. You can spend your time focusing on all the negative aspects of this disease of which there are loads! Unfortunately there is no ‘good news’, so you have to focus on the positive aspects of your life. What can you do? And how will you do it? Don’t cut yourself off from friends, keep active, keep going, keep fighting but most of all as they say, ‘keep calm and carry on.’
You took part in the Fight IPF Choir project to raise awareness of the disease. What was that experience like?
I was excited about a trip to London meeting new people, having a glimpse into the film world and being part of an IPF choir. However, I felt nervous as this was a very new experience for me and anxious that I wouldn’t be able to speak to people about my condition without becoming distressed. On reflection, the experience allowed us to say things we’d never said as a family before and it was very cathartic, giving us the chance to share with others in the same boat. It was good for my daughters to meet other families who were dealing with similar issues and found it a very positive and supportive group. In the words of the song, ‘I’ve still got a lot of fight left in me’