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IPF Week: Joyce's story

Joyce, 49 year old mother of two from Manchester, was diagnosed in 2012 with IPF.

She is now waiting for a lung transplant at the Wythenshawe Hospital. It all started in 2008 when Joyce developed pneumonia after which her lung health didn't return to normal. Joyce shares her story with us:

“I knew something wasn't right, my breathing was laboured and I couldn't walk as far as before. I went to my GP but he couldn't find anything wrong with me. He said it was probably anxiety but the thing is, I'm just not an anxious person. This went on for a while but just after Christmas 2011 I had a chest infection and was referred to hospital and was diagnosed with IPF.

“I had never heard of IPF before, and because it is a rare illness the doctors admitted they didn't know much about it either. I was particularly shocked when I was told to 'Google it' and that I should believe what was written and let them know if I came across anything new. They couldn't offer me any medication but did think I was a suitable candidate for a lung transplant so was referred to Wythenshawe hospital where, after a series of assessments, I am now on the transplant list. Waiting for a donor is hard but I remain hopeful and tell myself that all it takes is just one phone call.

“I used to work part time as a library assistant and am an Authorised Lay Minister in my local church but this year my condition has got much worse and I so have had to stop working which I'm finding very frustrating. Over the summer I got very ill and had to spend two weeks in a specialist hospital. They found that I had developed Pulmonary Hypertension because of the scarring on my lungs from the IPF. I also had retained a lot of water. They put me on some new medication, including Viagra, and thankfully it is much better now.

“I am also now on 24 hour oxygen and am so grateful to my husband, two sons and lovely friends who are so great and supportive to me. “I used to walk the dog five miles a day but now I find just walking 100 meters is difficult. This disease is like being hit by lightning and so life changing that some days I look at myself and find it difficult to recognise who I am”.

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22 September 2013