Support should be available to everyone
Kenny’s wife Vivienne was diagnosed with pulmonary fibrosis (PF) and sadly passed away in 2017 aged just 32. He shares the impact of her diagnosis and the need for support for all those affected by lung disease.
In 2013, Vivienne was having issues with her breathing. After visiting the GP and having a series of tests, she was sent for a lung biopsy to identify what was going on. The results came back and the diagnosis was a rare inflammatory disorder called dermatomyositis. This was causing scar tissue to build up in Viv’s lungs and led to a later diagnosis of pulmonary fibrosis.
I didn’t know anything about pulmonary fibrosis
I just thought she’d be given some antibiotics and there’d be no problems. It wasn’t made clear to us that it was a terminal disease.
I went along to all the appointments with Vivienne but didn’t feel like we were given the opportunity to ask any questions about the condition. Instead, the doctors just got on with what they needed to do to look after her. As Viv became more unwell, the doctor said “I wish there was more I could do for you” – a light switched on for me and I realised how seriously ill she really was, so I did my own research at home.
In 2016, doctors told Vivienne it was likely that she only had a year left to live. Three weeks later, we found out that Viv was three months pregnant, it was an enormous shock! Despite her prognosis, Vivienne was determined to see it through as all she’d wanted was to have a child. She spent her pregnancy in a wheelchair and on oxygen therapy. The pregnancy really took its toll on Viv, and it was touch and go whether both of them would survive but at 32 weeks, our miracle baby Jacob was delivered by caesarean section – by then, Viv’s lung function was just 30%.
I had no one to talk to and was overwhelmed with grief
The way Vivienne tackled her illness was so brave and inspiring but in the last 3-4 months of her life, I found it hard to cope seeing her the way she was. Watching someone struggle to breathe when you’ve got no control over it, that’s awful. Even now, that’ll never leave me.
When she died, Jacob was just 18 months and I felt so alone. I had lots of help before while Vivienne was here. But the second she died, all that just disappeared. I’d gone from being a husband, to a carer, to a single Dad and a widower. When Jacob started nursery, that’s when the loss really hit me, and I struggled with some very dark times. Being a newly single parent until that point, I didn’t have time to process everything. It wasn’t until Jacob’s nursery teacher asked how I was coping, that I finally felt able to open up and ask for help.
I started seeing a therapist and came across the Pulmonary Fibrosis Trust on Facebook. They were there for me when I was in need and suggested a mother and baby support group (in which I was the only dad!) where I could chat to others who had had similar experiences.
Support should be available to everyone
When someone receives such a devastating diagnosis, more support should be available for all those involved, the person with the lung disease, and their family or carer.
Pulmonary fibrosis, like any disease, can impact people differently but I think there should be someone that takes the family aside and says, ‘we know not everybody’s the same, but this is what could be coming’. You should be prepared for it. I wasn’t prepared, and that made it even more devastating to witness.
I still have a part of Vivienne with me
Jacob is an amazing little boy and is just as passionate as I am in raising awareness of pulmonary fibrosis and letting people see what it is. I’m an ambassador for the Pulmonary Fibrosis Trust and Jacob is their mascot.
The lack of knowledge is astonishing so together we hope to help as many people as we can as they deal with this horrible disease. Vivienne would be so proud of Jacob, and so am I as he so bravely honours his mummy’s life.
The Taskforce is calling for all people with lung disease to have a personalised care and support plan. Patients, families and carers should have access to relevant information about their condition, treatment and management. Support groups for both people living with lung disease and their families and carers should be promoted and signposted.
Shirley Burns, 7 September 2022
Thank you Kenny for being so open about yours and Jacob’s loss of Vivienne. You both are PF Champions.