Emily discusses her dad John's diagnosis of idiopathic pulmonary fibrosis, and how they support each other day to day...
What was your first thought or feeling when your Dad was diagnosed?
Firstly, the initial thought was one of confusion, it wasn't a condition I had any knowledge of, so it felt like the worst thing in the world along with the confusion of not knowing what the outcome was. Even the word idiopathic was unknown to me. When I googled it, it was made even more scary as the NHS site almost immediately labels it with the 2-5 year prognosis. Initially, it felt like the biggest heartbreak I'd ever had.
I was only 19 at the time and was already thinking about my dad's passing, which seemed so unfair.
What was the journey to diagnosis like?
The journey to diagnosis was equally as confusing. He was diagnosed with what was thought to be bilateral pneumonia in the December (2019) and was really poorly with it, and it wasn't until the May (2020) that we got the diagnosis of IPF. The GP seemed almost hesitant to refer my dad to a respiratory team, it wasn't until one really good GP was insistent on it that we got that appointment.
He went through lots of tests and then the day he got his diagnosis was a matter of weeks later. I always remember it was on International Nurses Day, it seemed very poignant that we were celebrating my dad's history as a Mental Health Nurse whilst also grieving that he had an awful diagnosis. He told my sister and I, and rang my brother to come over so he could tell him too. We all just sat and cried, and seeing my dad cry really hit home that this was real and was happening whether or not we liked it. It has been a year and a half since diagnosis and he has just started on Nintedanib and has oxygen support through a nasal cannula. My dad has recently come off from Nintedanib as the side effects weren’t worth it for him unfortunately- but he gave it a good go!!
Have you and your Dad felt supported by anyone / anything during this process?
Having family around has been the best support. Knowing that all of my family are going through the same thing and that we are all together makes it a lot easier. Having 2 siblings also makes it easier, as at first I felt almost as if nobody understood how sad I felt because whilst they could feel sorry for me, it wasn't their dad who was poorly. Having my brother and sister as support is amazing.
My dad always says it is made all the easier having such a close knit family, as he knows that even when he has those days where it feels unmanageable, he can fall back on us and we will support him through it.
What piece of advice would you give to someone in the same situation as you?
If I could give any advice to people with a parent with IPF, it would be to seek support. For the first year or so I was really closed off about it, I didn't like to talk about it and I almost liked to pretend it wasn't happening. Opening up to people and talking about my feelings makes managing them so much easier. I still feel alone in it sometimes, as it is a very individual experience, but knowing that there is support through organisations such as yourselves makes it feel a lot less scary.
My dad is my best friend, and he always manages to put a smile on my face even in the most awful of times.
I've attached some images of me and my dad, some from when we work together in a residential kitchen. Lots of our lovely memories of when we were first getting to grips with it are here, as we would have lots of time to talk whilst staying busy. He likes to send us photos everyday when he has his nasal cannula in, he's trying to normalise it as it still feels scarily new to him.
We just finished doing a '100 miles over December' fundraising challenge - we are up to £850 so far which is amazing considering my goal was £150!!