This is an edited version of the full article.
“I lived in Austria for a long time but moved back to the UK in 2003 to become my mum’s main carer, who had dementia. One day I walked the steep climb to Tintagel Castle in Cornwall and could hardly breathe. I thought I just needed to exercise more, but then developed a persistent cough. My GP heard crackles in my chest and referred me to a respiratory consultant. After a CT scan I was told that I could have idiopathic pulmonary fibrosis (IPF) which I had never heard of.
A lung biopsy confirmed the diagnosis.
One of the best things I did was start ‘singing for breathing’ classes. In just a couple of months, my forced vital capacity reading went from 70% to 95%!
It is truly amazing how learning to breathe properly can help. My lung capacity decreased to 80% while my singing coach was away which shows how much of an impact it had. I have also learned how to recover from breathlessness when out walking.
“My involvement with APF came after I attended an information day and met trustees who spoke about research, support groups, and the lobbying they were doing on behalf of patients. I expressed an interest in helping and was invited to join the board of trustees. There are now over 75 support groups in the UK—something I am immensely proud of.
Attending a support group was one of the best decisions I’ve made, meeting others in the same position all with different methods of coping
I run a small group in Plymouth, and I am about to set up another in Torbay.
“Early in 2019 I had a bit of a crisis. I couldn’t walk far and was getting very out of breath doing the simplest of tasks. I was convinced the IPF was progressing rapidly. I was eventually diagnosed with a pulmonary embolism and it took me three months to feel better again. My advice is don’t assume that a deterioration in your condition is just progression of the disease.
Now I am careful not to overstretch myself. I plan ahead and keep my heart rate and exercise at a suitable level
I do remember my time walking without restrictions in the mountains in Austria: how I would love to be able to do that now!