Trevor has been living with Idiopathic Pulmonary Fibrosis for over 10 years now and in that time has been actively involved in research and the development of initiatives to provide enhanced practical outcomes for people with IPF. We were privileged to have Trevor take the time to share with our team the impact his diagnosis has had on his life, what he sees as the priorities for care and research as well as offering some positive and wise advice to those diagnosed with the disease.
Tell us a bit about yourself and your diagnosis of IPF.
My name is Trevor Allan. I am married to the most amazing person I know, the father of 3 wonderful kids, stepfather to 3 more and grandad to 14 beautiful grandchildren. I spent 15 years teaching in high schools and 20 years working in the disability sector within universities. I received the Vice-Chancellor’s Excellence Award from the Australian National University and University of Western Sydney and was the first Honorary Life Member of ATEND, the Professional Association for Disability Professionals in Tertiary Education.
I had a very happy family life, a satisfying career and things were pretty good, except I was often fatigued and became breathless very easily, which I attributed to being an unfit, overweight smoker. A colleague of mine suggested I get my lungs tested because she felt my breathing was abnormal. Thankfully, I took her advice and was subsequently diagnosed with Idiopathic Pulmonary Fibrosis in January 2013. I was referred to the Respiratory Clinic at RPA Hospital where Prof Tamera Corte and her team have been looking after me ever since.
In July 2014, during my regular check-up with Prof Corte, she told me about 2 new treatments that had been shown in trials to slow the progression of IPF. I am afraid I broke down and wept, because for the first time since I was diagnosed, I had HOPE. Finally, there was something that could be done that just might help. Fortunately, Prof Corte organised for me to begin a compassionate trial of one of these treatments, Nintedanib, and my condition quickly stabilised and my functionality improved. This continued until late 2018, when, upon returning from 6 weeks travelling around Europe, I contracted double pneumonia. Since then, I have had problems with further lung infections, kidney stones, DVT and in late 2020, I was diagnosed with Pulmonary Hypertension. With this, my functionality has decreased, my breathlessness is chronic, and I am on 24/7 oxygen.
What have been the main challenges of living with IPF for you and how do you manage with them?
When I was first diagnosed, the prognosis was bleak. At the time, I was told that the disease is chronic and progressive, the cause is unknown, there is no approved treatment, and you will decline in function and probably die within a few years. The fatigue and breathlessness made it hard to continue working in a senior position responsible for dozens of staff, multi-million-dollar budgets and in high-level policy and projects. After using all my sick leave and dipping into my superannuation, I was finally medically retired in October 2013, on a much-reduced pension.
It has been a huge challenge adjusting to living with IPF. The physical limitations are significant. Even though I have lost a lot of weight, given up smoking and tried to improve my fitness, it has become increasingly difficult to do things that used to come naturally – walking, mowing the lawn, washing the car, playing with grandchildren, sex and more. Fatigue is a constant companion and finding the motivation to keep getting out of bed and trying to live as normally as possible gets harder and harder to find. Financially, it has hit us hard, with medical costs for things like oxygen concentrators and mobility scooters and the extra costs for medications and specialist visits all adding up. I was forced to retire at my peak earning capacity and forego substantial income and superannuation.
For a few years, things were better. My physical health and breathlessness improved, I was able to do much more including welcoming a half dozen new grandchildren, ticking off quite a few bucket list trips in Australia and overseas, participating in new hobbies such as Toastmasters and feeling better.
When I became sick again and diagnosed with pulmonary hypertension, it was a shock and another major readjustment. I had to accept that I was back at the beginning with chronic, progressive disease with no effective treatment. My life is even more restricted by requiring 24/7 oxygen and increasing breathlessness with minimal activity. I depend very heavily on my “Energiser Bunny“ wife, Julie, for so much of the basic necessities of life and I now get assistance from personal carers with my daily showering and dressing. While it is functional, you lose a great deal of independence and agency in your life, and that is hard, particularly if you have been used to being in charge.
I tend to manage the impact of my illness by trying to be grateful and accepting. Being grateful for all the positives, such as my ever-patient, incredibly hard working and equally incredibly loving wife, my beautiful family and all the wonderful memories I have. I am grateful that my mind is largely unaffected, and I can still think clearly and logically and even sometimes beat my wife in our daily crossword challenge. I may not be able to physically fly overseas again, but I can look at the photos of my journeys and experience something of the original thrill. Seeing myself in front of the Parthenon in Athens or the Citadel of Mycenae, reminds me not only of the lifetime dream to go there, but the sense of achievement to have been physically able to climb those mountains to reach these long-desired goals.
I also maintain a connection to my former colleagues, and occasionally contribute to discussions, problem solving or policy developments. I enjoy using my knowledge and experience, and my colleagues seem to appreciate my input.
Tell us about your involvement in IPF clinical trials and/or research.
Working in universities, I have been aware of the nature and purpose of clinical trials and other research in advancing knowledge and medical treatments. I have personally benefited from the contributions other people have made through clinical trials and research – I am still alive and have had at least 8 bonus years (and 6 grandchildren) due to these contributions. Therefore, when Prof Corte asked me if I would be prepared to join a Consumer Advisory Group to assist researchers understand the consumer perspective and enhance research and trials with more effective targeting, I readily agreed. I feel it is important to give back what you can, so that, even though you may not personally benefit, you may contribute to something that may benefit many others. So far, the group (including my amazing wife, Julie) have done a lot of work reviewing and ranking research proposals as part of the grant evaluation process. We have also worked with emerging researchers to provide advice and feedback lay summaries and why their work is so valuable from the consumer perspective.
What do you see as the biggest areas of need in IPF care? What would you like to see as research priorities for IPF?
Quite by accident, I have recently met two women who have just been diagnosed with IPF or similar. Both were very concerned and unsure about what was going to happen to them. One had not yet met the respiratory team and was very reassured to hear they were a nice, caring and professional team, while the other just wanted to connect with someone who had some idea of what she was experiencing and as well as some practical advice about using 24/7 oxygen. So I think information and reassurance before they even go to their first appointment – maybe a phone call to explain the process or connecting them with support networks. It is important to remember that being diagnosed with IPF is scary, the future can look bleak and uncertain and your whole life is about to change radically. People need support to negotiate this. There are also the practical issues of understanding the testing and treatment regimes and possible strategies to negotiate. It can be overwhelming at first, so information, support and advice is very important.
I believe research priorities fall into 3 categories:
a) Prevention – Identifying as many causes of IPF as possible and developing proven strategies to minimise the risk of developing IPF.
b) Treatment – Improving the effectiveness, reducing side effects, improving the experience of using current treatments. Developing new treatments and evaluating their effectiveness
c) Cure – The Holy grail of research into this illness. While it is wonderful that there are now treatments that can slow the progression of IPF, ultimately, we should be seeking a way to halt and then reverse the fibrosis, so that people are able to recover from this incredibly restrictive and ultimately deadly disease, and return to living productive, constructive lives. It not only has a positive effect on people’s functioning, but also their mental state. If the best I can look forward to, is much worse than what I experience now, it is ultimately depressing, but if there is that invaluable gift of hope that things could possibly be better, you can change someone’s whole outlook on life.
Given your experience, what advice would you give someone who has just been diagnosed with IPF?
Hang in there. There are effective treatments available that can limit the impact of the illness for now. Follow the advice of your treating professionals and try to stay positive about life. There is still so much living to be done. Remember that there are amazing, awesome, brilliant people conducting ground-breaking research to solve the problems of PF. There are people looking for a cure, not just treatment and you never know what is around the corner. Look at me. I am coming up to my 11th anniversary of being diagnosed with IPF, when initially I would have been lucky to reach my 3rd anniversary. Be patient. Endure the challenges. Savour the moments of joy.