Helen Campbell is going the distance for pulmonary fibrosis in memory of her husband

Date published: 29 August 2022

A Rochdale woman is aiming to walk 200,000 steps throughout September for Pulmonary Fibrosis Awareness Month in memory of her husband.

Helen Campbell, 45, lost her husband, Gary, to pulmonary fibrosis on 6 April 2022, one day before their sixth wedding anniversary.

Pulmonary fibrosis (lung scarring) describes a group of interstitial lung diseases where the lungs become progressively stiffer and smaller, eventually leading to low oxygen levels in the blood. Pulmonary fibrosis (PF) affects around 70,000 people in the UK.

The couple met in the 1990s in a Rochdale pub where Gary worked as a karaoke DJ, and began dating in 1997.

Helen said: “Gary was a little older than me and had four children when we met. We had two children of our own in 2004 and 2008 and in 2009 we took custody of two of his grandchildren. I worked full time as a nurse and Gary was a stay-at-home dad caring for our girls who are now 14, 15, 17 and 18.

“After 19 years together, we went on a holiday of a lifetime to Las Vegas and while we were there we got married, with our girls and the older children watching at home. Gary was extremely family-focused and everything he did was for his children or family, and he has left a huge hole in everyone’s lives.”

Gary was diagnosed with idiopathic pulmonary fibrosis in April 2019 after a few months of testing following a persistent cough and chest infection. There is currently no known cause of idiopathic pulmonary fibrosis.

Helen continued: “At the time we didn’t know much about PF and even as a nurse I had not heard of it or understood the implications of the disease.

“As Gary remained fairly well for the first 12-18 months, we didn’t think much of it. Gary was a bit more restricted in how far he could walk or what he could do but in general managed to carry on as normal.

“We did ask at that time if Gary could be referred to the Northwest lung centre as I had read up about their provision and we hoped this could help but were told that Gary wasn’t yet ill enough for that.

“Then Covid hit and Gary’s follow-up appointments all but stopped and unfortunately when we finally managed to get him an appointment for a lung function test, his lung capacity had dropped dramatically.”

Gary was finally referred to the Northwest lung centre and he was given ambulatory oxygen so he could continue as normal to some extent, but daily chores were becoming more difficult for him.

“Covid continued to have an impact: appointments were held virtually and there were delays in potential antifibrotic medications that Gary was told he was a candidate for.”

“In the last six months of his life, Gary’s lung function dropped further, and he was extremely restricted, needing 24/7 oxygen and mainly staying in the bedroom at home as the stairs became difficult for him.

“Gary was admitted to hospital on 4 April 22 with a chest infection and deteriorated quickly. Due to the damage already in his lungs – plus the medication he was on that lowered his immune system – he was prone to infections and this time didn’t have the reserve to fight it.

“He sadly passed away on the 6 April, one day before our sixth wedding anniversary.”

Now Helen has signed up for Action for Pulmonary Fibrosis’ Going the Distance charity challenge, and has been sharing their story to raise awareness of the condition.

“Regrettably, we weren’t aware of Action for Pulmonary Fibrosis or any local support groups until near the end of Gary’s life, but this would have been useful so much sooner.

“It is clear from speaking to other people that awareness around PF is extremely low. People presumed he must have been a smoker if he had lung disease and that he had COPD, yet Gary had never smoked, and we found there was so much more resource, support and education for people who have COPD, which just isn’t fair,” Helen added.

“If anyone else finds themselves in a similar situation I would advise contacting Action for Pulmonary Fibrosis as early in your journey as possible to see what advice and support is available as I have found out so much since I discovered the Facebook and website.

“Since Gary died, I have been trying to raise awareness about PF through sharing social media posts or sharing our story. I have signed up for Going the Distance in September and myself and my puppy Humphrey will be walking 200k steps to raise awareness and funding.

“One of Gary’s older daughters Sammie has also signed up for Create a Stir and will be holding a coffee morning at work in September.”

For more information about pulmonary fibrosis and the symptoms, please visit www.actionpf.org/information-support/what-is-pulmonary-fibrosis