Gary and Helen had been together for 25 years, although they didn’t get married until 2016 in Las Vegas. They have a blended family of six children and 10 grandchildren. Helen describes Gary as a family man – he loved family.
At the time Gary was diagnosed in 2019, neither of them realised the significance of this or the ultimate outcome. Even though Helen is a nurse, she hadn’t heard of pulmonary fibrosis. Sadly, they received no signposting and no explanation and, like many, resorted to ‘Google’ where they were shocked at what they read.
A year later the pandemic hit which had a “massive impact on Gary’s treatment plan”. Helen tells us they didn’t get a follow up appointment and by the end of 2020 she instigated an appointment when lung function tests were redone, clearly showing regression in Gary’s lung capacity.
Gary was eventually supplied ambulatory oxygen but even that wasn’t without its challenges. They had to ‘push’ for an oxygen review. Gary didn’t get a chance to try the anti-fibrotic drug, Nintedanib due to approval issues – something that has since changed.
Above all Helen feels strongly that specialist counselling should have been available to them. They had nowhere to turn and sadly didn’t find APF until it was too late.
I am very keen to raise awareness of PF as until Gary was diagnosed, we hadn't heard of it, and I'm a nurse! I'm also very keen to keep Gary's memory alive and let people know there is support available as we found it late on in Gary's journey.
Helen has found many ways to celebrate and remember Gary’s life. She has joined APF during September to ‘Go the Distance’, raising £575 last year. She chose to donate through a Facebook Birthday fundraiser, has hosted a bake sale at work and got wider family involved in fundraising too – her niece ran a sponsored 5k.
Helen has also purchased APF roses and last year posted on the APF Remember this September Dedication Page. You too can share your memories of a loved one lost to pulmonary fibrosis here
💜 Remembering Gary 💜