I was wrongly told I had IPF and I don't want others to go through the same

Marion was told that she had idiopathic pulmonary fibrosis (IPF) and had 6 to 12 months to live.

I’ve had respiratory bronchiolitis interstitial lung disease (RBILD), a type of interstitial lung disease (ILD) and emphysema for a while now. Back in 2002 I’d learnt to manage it fairly well with pulmonary rehabilitation and by joining my local Breathe Easy group

So it came as a surprise when I went to a routine doctor’s appointment and was told I actually had IPF, a type of ILD that causes progressive scarring of the lungs and has no cure. I was shocked to say the least! 

Following the diagnosis I had weekly discussions with a respiratory nurse about end of life care. She talked about the possibility of hospice care, morphine therapy and full time oxygen. It was all so depressing.

I had to go through the difficult experience of telling my daughter, family and friends that I only had a short time to live. It was such an upsetting experience. I had sleepless nights, started planning my funeral, and gave presents to my loved ones.

I made sure that I was treasuring every moment with my grandchildren, and appreciating the world around me and the beauty of nature. The only up side of this horrendous time of my life was I got to sort out my cupboards! A job I'd put off for a long time.

After a routine appointment with my specialist consultant who I hadn’t seen for 3 months, I told her about how I was coping with being told I had IPF. At first she was confused. Confused because she had ruled out a diagnosis of IPF years ago.

It turns out that the doctor who had told me I had IPF didn’t see this in my patient notes and misunderstood my type of interstitial lung disease (ILD). They also didn’t communicate with my specialist! I was totally shocked. My sister who was with me at the time burst into tears of relief. I was numb. 

After several days and nights of trying to process this information I had to speak again to family and friends about this dramatic turn of events. The rollercoaster of feelings and emotions I've been on has been horrifying and goes to prove the importance of communication.

I wouldn’t want anyone to go through what my family and I have. I’m hoping that by sharing my story, I can raise awareness and improve the care of people with ILD. 


Across the UK there are still wide variations in the care given to people with lung conditions. We need your help. Please email your MP, MSP, AM or MLA and tell them you want a taskforce for lung health.

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Comments

My dad had pf worked in the belfast shipyard with asbestos deceased. My sister Brenda died aged 54 with Ipf. I was told I had ipf in 2015 aged 56. Still wondering if it had anything to do with the asbestos dust my dad had on his clothes which we would have breathed in as he nursed us on his return from work as young children.

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4 October 2017