Researchers are striving to make a difference in the care, support and treatment for people affected by pulmonary fibrosis. This would not be possible without the amazing patients who contribute to research efforts on many different levels. Jane kindly shares her story with us about her quest to help move pulmonary fibrosis research forward.
How did you find out that you had pulmonary fibrosis?
I had generally considered myself a healthy 60+, attending a gym until covid-19 and doing regular interval walks. Since then, I have continued from home with the support of a remote personal trainer, adjusting my walk and gym routines.
I had a hip replacement in June 2021 and was starting to get back to my pre-op fitness by the end of the year, but I developed 2 viruses which were not covid-19, that left me with a cough. I shortly started to get back to normal, but then had another blow by being struck down with Covid-19 in February 2022, although I was not particularly unwell after a few days and it didn’t affected my cough that much.
Over the next few months I struggled to get back to previous fitness levels, noticing tiredness as much as anything. During May - August 2022, I became aware of breathlessness during my exercises, particularly on interval walks along with cough and tiredness. I decided to go to my GP at the beginning of September – I was sent for chest x-ray, and then straight for a HRCT scan in October. This showed up the fibrosis and scarring in my lungs.
Finally, after mess-up by my then GP surgery, I was told the results in November on a telephone consultation. The doctor referred me to my local hospital. In the meantime, I arranged a private consultation in December which confirmed PF, but I needed other tests to confirm it was IPF. This was done through my local hospital, and the specialist lung centre has prescribed the antifibrotic medication, which I started two months ago in September. I also have pleuroparenchymal fibroelastosis (PPFE) which is a rare form of pulmonary fibrosis on my left lung.
What made you interested in taking part in research?
Before my first appointment with the local hospital consultant in January 2023, Peter, my husband, had done a lot of research online and found out about various research projects. When I mentioned to my respiratory consultant that I was interested in becoming involved in research, he jumped at my enthusiasm!
I felt that by taking part, I was increasing my own knowledge and counter-acting the negativity of my diagnosis by doing something positive. This could maybe help me, but if not, it could help others in the future.
How did you find out about opportunities to take part in research?
I was approached in June (before seeing my consultant) to be screened for the Fibroneer trial. Unfortunately, after going through two screening assessments, I was not deemed eligible to take part and it was in my best interests not to. After my August consultation that confirmed this, I was asked to join the EPIC group and the Predict ILD project. I was also approached in October to do home monitoring research. They obviously have my name!
What were your expectations of taking part in research and how did this differ from reality?
I don’t think I had any concrete expectations so have not been disappointed or unduly taken aback by anything. My “popularity” seems to suggest a need for volunteers!
Now that you are taking part in a research study, what does this mean to you?
I was a little disappointed not to get on the Fibroneer trial but more I was uneasy as to why. I always have questions about what I am feeling and why I am feeling it. There is an uncertainty about the ‘normal’ progression of disease. My consultant put my best interests above those for taking part in the study.
For me personally, now that I am taking part in research studies, it has made me feel I can have a part to play in things. I feel useful. A big plus is the feeling of being monitored and looked after more, I suspect, than I would otherwise have been.
If you had one piece of advice to give to other people affected by pulmonary fibrosis who are interested in research, what would that be?
My advice would be: Go for it. You will feel part of a community that is understanding how your life has been turned upside down, and wants to help.
Action for Pulmonary Fibrosis would like to thank Jane for her amazing contribution to research and so graciously sharing her story with us. The time and thought that has gone into documenting this is very much appreciated.
Without people like Jane, researchers and healthcare professionals around the world would not be able to discover new and improved treatment options, that have the potential to improve people's quality of life.
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.
As highlighted in Jane's story, there are many reasons why someone may not be able to take part in research, but any conversation had about PF research helps to move things forward. We hope that Jane's encouragement and determination to not give up on taking part in research, is inspiring to the rest of the pulmonary fibrosis community.