Peter's Story: What research means to a loved one

Pulmonary fibrosis research is striving to advance the treatment and care that patients receive to improve people's quality of life. Pulmonary fibrosis doesn't just have an impact on the person diagnosed with the disease, but also loved ones too. Peter's wife has pulmonary fibrosis, and he shares his thoughts with us about the impact of research and what it means to him.

Peter's Story

What is your connection to pulmonary fibrosis?

I have been married to Jane for 47 years, and over the last couple of years she has been gradually getting more breathless when exercising or walking up hills. Following an initial CT scan in September 2022 a confirmed diagnosis of IPF was made in March 2023.  

What does research mean to you?

Having found out about IPF through personal research (I always want to be knowledgeable about what is important to me) and talking to Jane’s “support team” of medical professionals, I would like to play my part in helping data collection and feedback. I want to contribute to the progress made in understanding more, treating and, hopefully, eradicating this disease. It also enables patients to feel supported and mentally strong during what must be a frightening and lonely place at times.

How did you feel when Jane was not able to take part in a research study?

It was a significant knock back to me when Jane was not able to take part in the first drug trial she applied to which she was prepped for in the autumn, but that experience showed me that access to a drug trial can be difficult, with several factors potentially getting in the way. Such as:

  • What is the clinical priority for the patient at the time?
  • What are the exclusion criteria (the reasons why someone cannot take part) being applied to participation by the drug company?
  • If accepted, how far and how often does the patient have to travel during the trial?

I think the time it takes to go through the “vetting” procedure for a drug trial, the disappointment if “rejected” or the commitment of time on an ongoing trial if “accepted”, may put people off, but participation in a trial to me magnifies the possible impact you can make and helps that positive mental state even more. We know that initiatives like “REMAP-ILD” are also exploring novel ways to construct trials to make them more “user friendly” for participants. Even though I am not a patient myself, through my lived experience I too am able to help develop this research project and contribute to research.

What made you both not give up with Jane taking part in research?

I am pleased that Jane has now been able to volunteer to help on various research studies, and grateful to the Exeter and APF based staff who have provided the opportunity.

Overall, taking part in research gives a positive purpose to patient and family in what can be a very negative time, and helps, I think, our mental attitude as a result. It allows us to participate, in a small way, to the progress being made. It gives purpose within the context of a life limiting disease to feel that she is helping “overcome” the disease, which is a positive amid the challenges. To take part in a drug trial would magnify these positive aspects, particularly if the trial turned out to be successful, and led to improved outcomes for IPF patients, and, of course, maybe directly help Jane’ s condition too.

Now that Jane is taking part in a research study, what does this mean to you?

It gives both of us the satisfaction that we are contributing to the effort being made to deal more effectively with IPF, for this and future generations of patients.

How does Jane taking part in the research study have an impact on your daily lives and has it affected Jane’s standard health care?

Taking part in the research projects has not “interfered” with the regime of taking an antifibrotic drug twice a day.  The extra interaction with medical / research team and other patients has also given more opportunity to check things out and ask questions, not just in regard to the specifics of the research, but also about IPF and its impact on Jane. It has definitely been a positive impact on me, demonstrating care/concern for the individual which is so important given the impact of the disease.

Action for Pulmonary Fibrosis would like to thank Peter for sharing his story. His contribution to research with supporting his wife, Jane, and bringing his lived experience to the forefront by helping researchers understand more about the disease is really important.
Without people like Peter and Jane, and the amazing support from everyone affected by pulmonary fibrosis, we would not be able to move research forward.

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