IPF Week: Sarah's story

Sarah’s father Clive had a viral infection which left him with a persistent cough.

In the New Year of 2001 he noticed that it was harder to run for trains, walk uphill and climb stairs. Clive visited his GP and was sent for a chest x ray, but the results got lost so he decided to visit a specialist privately - this was when he was diagnosed with IPF.

After the shock he decided that life should go on as near normal as possible and continued working full-time in a high pressure and stressful professional job travelling and pitching for contracts until he had to accept he couldn't carry on in Spring 2002.

In late Spring 2002 he was admitted to hospital where he spent 11 days struggling to get the correct treatment. His daughter Sarah said,

I was doing my finals at university at the time and I remember mum phoning me on day nine of his hospital stay to say that he had been able to stand up to shower. That was a huge shock for me – it really brought home how quickly he could deteriorate with this condition; that a simple act like having a shower had become something to celebrate.

Clive was referred as a possible transplant case to the North West Lung Centre at Wythenshawe where his care was excellent and his diagnosis was reconsidered and changed to a different type of ILD, non-specific interstitial pneumonitis (NSIP) with a slower progression but still a terminal condition.

Clive went into discussions about a possible lung transplant but, after much research he decided that he wanted quality of life, not quantity. In November 2007, six weeks before Clive died, he decided to go for the transplant assessment as his prognosis was deteriorating; the appointment was set for January 2008 but he became ill in December 2007 and developed pneumonia.

He was admitted to hospital on Monday 18 December and died on Saturday 22 December aged 62, and his funeral was on New Year’s Eve. Sarah added

Music was vitally important to Dad and he would have loved to make a career of it. He had been performing and composing since he was a teenager in the 1960s. When he could no longer work, making and performing music was crucial in staving off the natural feeling of  depression that comes with knowing that you are getting sicker and are going to die soon.
Even the day before he died he was positive, coming up with new song lyrics on a note pad. He also performed ‘I want Jesus to Walk with Me’ with Auld Triangle a month before he died. Singing was beneficial to him, because when you sing, you plan when to breathe. This gave him more control over his breathlessness.

Sarah has a Breath of Life tribute fund in memory of her father Clive. She and her sister, Sue, complete the Manchester 10km in May 2013, raising £750.

The fund is currently around the £2,000 mark as Sarah already completed a 5km Woman’s Challenge in London in 2008, received donations from Clive’s funeral, and contributions from a Folk gig night held in Clive’s memory in May 2008 at Lymm when he had meant to be the guest artist.

Sarah is keen to raise awareness of ILD and the Breath of Life fund is earmarked for work around the condition. Sarah said,

The money we raise will hopefully mean other families might have a less stressful time in the immediate aftermath of diagnosis whilst we wait for the researchers to find out what the causes of ILD are and how it can be, hopefully one day, cured.

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22 September 2013