How IPF has changed our lives

April 11, 2014, is the day that changed our lives completely. The Ron was diagnosed with idiopathic pulmonary fibrosis (IPF) at age of 53 years, and told he had 3–5 years to live.Where do you go from there? It like a bomb exploding in lives. We only recently got together 2012, believing we stretched out ahead us. But now, love found going be cruelly snatched away us relatively short space time. triathlete, swimming cycling every day, looked so well. How could ill?For me, those first days weeks were extremely emotional, full tears, sleepless nights, fear losing man I loved. wanted grow old together. life change? quickly it happen? What end like?We nowhere turn time, no leaflets, no-one guide or there stop feeling alone. That year hurdles; diagnosis, then passing Ron's mum, as well being made redundant his job. an all-time low; did not believe would get 60 certainly retirement age, what point planning future? started just live, waiting watching for something happen—the inevitable change.Ron's confidence took dive. He always soul party, loves make people laugh. loved dance, time went on, if on cruise disco evening, rest 3–4 h afternoon 30 mins enjoyment trying feel normal age.Everything has planned. Are any hills, inclines, steps? If so, don’t places, which can quite restricting. A busy followed by rest. Lifting heavy things, carrying shopping, mowing lawn, exerting himself causes have coughing fit, all these jobs. Mentally, me this been hard.We foster carers diagnosis give up because chance catching infections became too much risk, regret. Our changing very quickly, challenging physically mentally.One talking about future, decided dealt hand couldn’t change it, but choose whether let beat take charge situation find positives new challenge bring. Yes, expected carry working, fostering, seeing family friends, enjoying home, retirement, when after hard work retire enjoy travelling full. However, IPF snatching us, decision married. emotionally charged both knew line “’Till death part” prominent part service, many tears attending, laughter despite exhausted it.We fulfil bucket list. sold house downsized bungalow prepare future release capital set aside retirement. immediately trips countries dreamed visiting. visited 78 4 ticked off lot know lucky opportunity, sees getting thought 20 more condensed into 5.During journey, introduced Royal Papworth PF Support Group. attended meeting trepidation, soon realised relief felt same disease, laughing, living, best while supporting each other. asked become chairperson group, gave him great satisfaction renewed enthusiasm raise awareness disease. This led several opportunities coming along Ron, included giving talks Members European Parliament, pharmaceutical companies, support groups, other medical arenas how disease impacted life.In bid help others, trustee Pulmonary Fibrosis Trust, who provide practical aides their need. received letters gratitude patients given freedom mobility scooter. rewarding him. advocate raising wherever however opportunity arises.At one patient advisory board meetings Europe, join. carer somewhat surprised encouraged participate fully. opened my eyes idea carers’ points view matter, concerns issues deal are valid themselves. Without carers, patient's world limited. since passionate journey shown little understanding receives. I, taken carer's plight joined Taskforce Lung Health representative sure voices heard.If 6 ago doing awareness, neither believed amazing passion helping others achieve, your own circumstances.While still constantly aware illness deterioration, fortunate access antifibrotic drugs—pirfenidone, 4·5 steep decline nintedanib, currently on. Despite drugs causing side effects, feels they passed original 5-year prognosis given. now ambulatory oxygen. itself obstacles, making enough coping looks strangers. down 50% lung capacity, personal changing, reality does hit home. noticed friends backed becoming smaller place due limitations now. manage mental physical wellbeing past even challenging.Ron phone calls local hospice regarding times really terminal implications holds own. tries worry having neutral person talk massive him.We changes happening pathways knowing call outlook them less alone able fight illness, keeps positive. although planned us; fought back. may person's easier better comforting. As strange sounds, brought happiness, some never otherwise met.IPF will define Ron. complete person. Before, life, work, family, didn’t reflect see acts kindness such difference. rushing around—tomorrow expected, end. taught here journey.Ron turned December, 2020; huge milestone see. next goal reach hope possible transplant, remain positive there. live. Where ill? For like? change. age. Everything hard. mentally. One it. 5. During life. In arises. At heard. circumstances. While challenging. met. journey.