A carer’s experience of IPF from UK

Initially it was a big shock for the family. None of us had ever heard of IPF and we all immediately thought it was lung cancer.

I wish for a greater awareness about the disease so that more people can distinguish between IPF and COPD. More accurate information needs to be available online. My husband was diagnosed with IPF in March 2008 after being struck down by a virus in December 2007. I had the same virus and when I recovered and he didn’t, we started to realize that something was wrong. At first we suspected that it might be pneumonia, but it got worse and worse. Then his GP thought he had Chronic Obstructive Pulmonary Disease (COPD). Once he was referred to a specialist he was diagnosed fairly quickly. He was at a stable level for about six months and then gradually got worse. He passed away in June 2012. Initially it was a big shock for the family. None of us had ever heard of IPF and we all immediately thought it was lung cancer. We did some initial research on the internet and found it quite difficult to find accurate information. As a couple, it was quite an isolating experience to live with IPF day-to-day. Various changes were made to our lives. We had to give up things like walking due to his breathlessness. It was a major source of frustration that he was no longer able to walk up hills. Instead, we joined a private swimming pool which gave him good exercise and was also nice and peaceful for him to go in the mornings.

On humid days, we would go for a drive with the air-con on as this made him more comfortable. He used a hand-held mini fan everyday which helped him enormously as it created the sense of fresh air. There are huge variations between patients with IPF and these differences must be recognised. It is a very complex condition that is not really understood. I wish for a greater awareness about the disease so that more people can distinguish between IPF and COPD. More accurate information needs to be available online. Many sites that come up on a Google internet search claim to have a cure for the condition, which isn’t true. At one point, I even considered taking my husband to China for one of the treatments as I thought it would be a big help. The British Lung Foundation was a great support resource. We found out most information from them and they were very reassuring when we called with questions.

Valentina