Alan’s story: “Taking part in research is part of my fight back.”

Having a diagnosis of pulmonary fibrosis makes you sit up and think about what truly matters. Taking part in research gives me wider view of what is happening and how this disease is affecting me. I’m going to fight this and taking part in research is part of my fight back.

When were you diagnosed with pulmonary fibrosis?

I was diagnosed with PF in 2023 following three years with a significant cough. I didn’t really take on board the consequences of the preliminary diagnosis at first and carried on as normal for a while.

At a consultation I asked ‘Well, what next?’. The consultant was blunt -  ‘you have three to five years left, more likely to be five if you take the antifibrotics’. My wife and I were left stunned – feeling completely blank. We were scared, we hadn’t really understood what was happening and came away feeling desolate.

We told my daughter what had happened. She is a nurse and had just seen a 92-year-old patient in her clinic who had had PF for some considerable time. As she was telling me, my thoughts turned from total despair, to, well that’s interesting. My daughter said:

you better start making plans

We began to realise that the 3-5 years could turn into 20+; who knows. I wanted to find out more.

How did you find out about APF?

We then faced another bad experience with the consultant, and wasn’t sure what to do next. The only saving grace was that within the consultants’ confirmation letter there was mention of APF. Through the APF website I discovered there were two support groups close to me. We attended a group and spoke about our experiences.  Things really turned around at that point and we found great support and quickly increased our understanding of PF.

A second opinion was sought with a different consultant and the world began to change for us.

How did you find out about the opportunity to take part in research?

We felt greatly heartened after seeing the new consultant. Things were more upbeat with a “here’s what we can do” approach. At the end of the consultation, I was asked if I was interested in taking part in research. Within a month I was contacted by the local research coordinator and asked if I would be interested in taking part in a trial.

I signed up there and then

What motivated you to take part in research?

Some don’t seem to understand research or perhaps feel that it’s going to be too intrusive – that’s not me! I am curious to know what this disease is all about.

Taking part isn’t too testing. For the trial, I take two tablets in the morning and two at night; and use a hand-held spirometer at home once a week. The kit and the tablets arrived in the post. I had training for how to use the spirometer and record the results on a tablet computer. Each week I produce a minimum of three blows on the spirometer and the tablet shows me if one of them isn’t quite good enough. It’s great, almost fun really, and very novel. It may sound funny, but it took me some time to get the blow into the spirometer right; now I am used to it.

I’m really happy with taking part and have an attitude of ‘right, lets get on with it’. Taking part has developed my curiosity as well. I want to learn more, have begun to develop an understanding of what the readings on the spirometer screen mean.

One of the downsides at the moment is that I don’t get feedback from the research team about what the recording of results means. This shouldn’t necessarily be expected as that’s not the purpose of the trial. However, a real positive in taking part is that I have excellent access to my consultant and nursing team if I need any help or advice, or just have a question. My consultant sees all the research information that is recorded and has access to my spirometry readings, so I can ask them for feedback.

How do you feel about potentially being given the placebo drug?

I haven’t had any side effects. I don’t know if I am receiving the medication or a placebo. That’s not a problem for me. If it’s helping somebody somewhere else in the world, either now or in the future, then that’s fine with me. It’s the bigger picture that is important.

Are there any barriers for taking part in research?

I see potential barriers for some taking part in research. A lack of understanding about what the research is, can really put people off, I think, but APF have research FAQs to help. Also, if someone isn’t computer savvy, it could be daunting, perhaps scary, depending on the type of research. But you do have access to the research team if you encounter a technical problem. They are always on call to support you. Another stumbling block I see is the awareness of what research opportunities are out there. But APF are developing resources to help with this including a new Study Finder.

We would like to thank Alan for sharing his experiences. Without people like Alan, researchers would not be able to investigate and find better and more effective treatment options for people affected by pulmonary fibrosis.

If you are interested in taking part in research, please speak to your healthcare team and ask if there are any potential studies that may be a good fit for you. You can also take a look at our Study Finder.

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