IPF Week: Peter's story

Peter was born in Burnley on 9 February 1936.

As a boy he was easily distracted by sport and other things but he went to college and was very successful in his life. In 1960 he married Janet, who he had known since he was 13 and she was 11. They had two children, David born in Burnley in 1961 and Catherine born in Seascale in 1964.

He led an active life, living all over the UK and doing many different things, including working as a bacteriologist, transport manager and eventually running his own business. He also spent time in Benghazi in the veterinary core when he was called up for national service.

In his spare time he loved to play golf and fish, spending many a happy evening char fishing in Newby Bridge, where he and his family lived for 15 years. Following a heart attack at the age of 55 he decided to retire and the family moved to their present home in Barber Green, where they’ve been since 1991.

They bought a static caravan in Dalston and have spent many joyful times there with some very good friends. They also had many happy holidays over the years in a touring caravan. They had a time share in Tenerife where they spent many happy holidays. And when they weren’t on holiday Peter spent lots of times up on High Newton Tarn fishing – even up until last year when he got there on a golf buggy.

Peter first suspected something was wrong when he began experiencing shortness of breath and regular coughing in mid-2007. His resistance to chest infections seemed lower than had previously been and he began to need a motorized trolley when he was playing golf. Peter went to his local GP and was sent for some lung function tests. He was then referred to Pulmonary Unit at Westmorland General Hospital for further investigation.

It was then that he was diagnosed with idiopathic pulmonary fibrosis (IPF). At first, Peter felt quite positive; he never considered that whatever was wrong with him might kill him. After having seen the consultant, however, he became aware that the condition was ‘terminal’. His granddaughter, Laura says:

My granddad was quite accepting of the condition, as he thought that he might be one of the lucky ones that lasted 10-15 years. A consultant had mentioned that in some cases this can happen. But another consultant that he really trusted said that it was a really horrible disease.

Peter was extremely susceptible to infections which meant his young grandchildren had to stay away when they had the sniffles. He had two quite long stays in hospital – one for a pneumothorax and the second for a severe chest infection. Then, he had another hospital stay for a double pneumothorax.

Both lungs were treated, Peter was discharged, and then the left lung collapsed again so he was readmitted. Slowly he became increasingly unable to go too far without oxygen and had to rely more on motorized trolleys and portable oxygen, although he did still make it to his caravan quite often.

Peter’s wife, Janet, became his main carer. Where Peter had done everything around the house, all the driving etc, Janet had to learn at the age of 75 to do many of these things. He was on portable oxygen at first and then a 24 hours concentrator was installed in the house.

A physiotherapist from the Pulmonary Unit came to the house regularly to help Peter exercise and keep him moving; he also had regular visits from a nurse from the same unit.

He would never discuss anything, and would never really talk about how he felt about his condition. Even when the pulmonary nurse came round he would not discuss with her the idea that he might die. But he enjoyed the exercise and he was really determined to do it, it helped him a lot.

Towards the end, the lack of oxygen made Peter very confused, and he would get frustrated with himself and others when he could not properly communicate what he meant. He began to spend more and more time in bed as getting downstairs, even getting dressed and up became a huge chore, taking up to an hour and leaving him exhausted.

He was very determined though, and would try most days to get up and downstairs even if it was at 5pm. He didn’t think it was right to spend all day in bed and hated doing so.

Peter’s experience of his diagnosis was a good one, his doctor referred him quickly and when he was diagnosed he was well treated. He also received pulmonary rehabilitation.

They were excellent. He went for a full course of sessions each Monday and only stopped going when the course finished. Sadly, he wasn’t not well enough to attend the second round of classes.

Peter passed away in May this year. Laura has since been very active in raising awareness about IPF and completed a bike ride to Paris which raised over £2,000. She says:

My granddad coped with his disease the best he could. He kept positive by continuing to do things he enjoyed for as long as possible – such as golf on a buggy, fishing using same buggy and going to the caravan. He had a lot of support and that really meant a lot.

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22 September 2013