“Research means everything! I can’t believe that in this age of genetically-specific therapies and 3D joint printing, we still have diseases that no one knows the cause of, that have such poor prognosis and so few people have heard of it unless it actually affects someone they love.” – Philippa.
For thousands of Australians like Richard, who lives with Idiopathic Pulmonary Fibrosis (IPF), research is hope. As his wife, Philippa, supports Richard through the good and bad days, she’s determined to help raise awareness of the devastating disease and help provide hope for a brighter future. This October, Philippa will be pounding the pavement as she takes part in the virtual City 2 Surf event to raise vital funds to support life-changing research.
“After experiencing a persistent cough for over a year and constantly having to clear his throat, Richard was diagnosed with IPF in mid-2017. He was pretty fit and regularly cycled the 20km circuit around lake Burley-Griffin here in Canberra. He noticed some breathlessness helping a friend move to a new house, and his breathing pitch changed – we joked that it sounded like he was “growling” at times.
After some persuasion (he’d say nagging) Richard went to the GP who sent him for a chest x-ray and suggested an inhaler. After a few months nothing really changed, and Richard was referred to a respiratory specialist who sent him for a CT scan.
The shock of his IPF diagnosis was brutal. Not long after we got that I was scheduled to go back to the UK for a couple of weeks of work, and I often used those work trips to grab a couple of days leave at the start and end of the trips to catch up with family who live over there. I can vividly remember managing to hold it together all through that long flight, and the drive from Heathrow to my parent’s house and getting in through the front door and bursting into tears again.”
While research has discovered treatments that can help to slow the progression of IPF, a lung transplant is the only intervention shown to increase life expectancy.
“There’s a complacency about much needed organs for donation, but we were determined to get on to the St Vincent’s Transplant Unit’s radar as soon as possible and they have been so supportive. We also connected with advocates like Donate Life.
After a decline in 2019, we were so grateful that Richard was already having regular check-ups & monitoring at St Vincent’s Heart & Lung Transplant Unit, so they started him on the process for transplant listing. He was activated on the list in January 2020.”
Along the way we also found Lung Foundation Australia and through the organisation, heard the stories of inspiring people like Bill Van Nierop. Knowing there is support available, and importantly, peer-support, is vital for any life-changing illness.”
As IPF progresses, breathing becomes increasingly more difficult and even the simplest of day-to-day tasks can become challenging.
“Because of Richard’s decline, we have had to move as he was finding it increasingly difficult to manage the stairs. He loves cooking and now has to use his oxygen concentrator to do it. He also has a mobility scooter for anything further than a couple of hundred metres from the apartment. This winter has been particularly difficult to navigate with the COVID-19 restrictions severely limiting contact with our family, as well as the cold of a Canberra winter keeping him inside. He tires so easily now which is hard to watch, and it can be difficult to navigate the fine line between offering to help and over asking!”
Australian-based research into this complex disease has provided significant advances in treatments which are giving hope that never existed before.
“What shocked me was that there were only two medicines available on the Pharmaceutical Benefits Scheme and they only “slowed” the disease – not curing or even halting the progress. Even with treatment, there still wasn’t a definite prognosis, it was all “maybe” and “it might”.
Research means everything! I can’t believe that in this age of genetically-specific therapies and 3D joint printing, we still have diseases that no one knows the cause of, that have such poor prognosis and so few people have heard of it unless it actually affects someone they love.”