IPF Week: Sue's story

Both of Sue's parents both diagnosed with IPF within two years.

Sue

Doug and Janet Hodson were grandparents to three young grandchildren. They had worked their whole lives, with Janet, who worked for Age Concern, only recently retiring.

Doug worked in motor trade and had his own business. They loved to spend time with their families and friends and were looking forward to enjoying their retirement together. They were both diagnosed with idiopathic pulmonary fibrosis (IPF) within just under two years of each other.

The family first suspected something was wrong when Doug developed a persistent, irritable cough. He visited his GP in January 2008 who sent him for an x-ray; he was quickly diagnosed with IPF. This was around the time his second grand-child was born.

Being a physiotherapist, Sue had heard of IPF before but she was no expert. She felt the support given was inadequate:

It’s such a terrible disease. With other diseases you tend to get an awful lot of support but it seemed that with IPF there was nothing.

Sue’s mother’s initial symptoms were very similar to her father’s. Janet had a persistent cough and chest infection; however her diagnosis was slower as it was initially thought she might have cancer. She was given the all clear and sent home and given a date for a follow-up at the hospital.

It was during that follow up that Janet was told she had IPF. She was diagnosed days before Doug passed away in December 2009, he was 65 years old. Unlike Doug, Janet underwent pulmonary rehabilitation. She completed one course but did not feel it helped her very much; she suffered from many flare ups during this time.

They were both also given several different anti-inflammatories, Janet was on a triple therapy drug regime but was taken off it as it had been shown to be ineffective through research.  Neither of the couple visited any Breathe Easy Groups:

My mum just didn’t feel it was for her, they were more geared towards people with COPD. She did go to weekly Wakefield Hospice afternoons for people with life limiting conditions. She found this helpful. She was visited by the respiratory nurse and was able to telephone her.
I remember the nurse only got in touch because I had wanted oxygen at a hotel as I was taking mum away for a night. She was surprised my mum wasn't under the review of a nurse already. My dad just kept working; I think that kept him going. It started getting to a point where it was noticeable and he’d get out of breath easily. My parents went on holiday and they thought he’d contracted pneumonia but it was just a flare up of the IPF.

Janet passed away in June 2012, aged 64. Sue tells us that she believes a patient charter would definitely have helped her and her family.

There just wasn’t any information; we didn’t really know our options at all. It’s hard to go out and actively find out about support when you are facing the fact that you are going to die. It would help if respiratory nurses made contact quickly and gave information about all support that is out there in their local area.

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22 September 2013