Andrew returned from playing golf with a friend, had a shower and blacked out from pain. He was taken to hospital and three days later, transferred to intensive care.
Tell us a little about you
“I’m Andrew, I’m 58 years old and I live in Kent with my wife, Katie and children, Finn and Annie. I have three older boys, Sam, Ollie and Harry. Sam and his partner Chase have a 6 month old daughter, Bonnie.
In my free time I love sports, playing golf, running, watching Brighton play and music/festivals.”
Can you remember your first attack of pancreatitis?
“I remember very little. It was April 2013, and I’d been playing golf with a friend in the morning. I came home, had a shower, came out of the shower and I must’ve blacked-out from the pain. All I remember is asking Katie to call an ambulance. I was taken straight to the local hospital and three days later transferred to intensive care. The diagnosis was acute necrotising auto-immune pancreatitis.
At the time, Katie was 6 months pregnant with Annie. The hospital was a two-hour journey each way for her to visit me, which she did every day. She was heavily pregnant and looking after Finn too, who was nine years old. I remember very little of my first two months in hospital, as was in and out of an induced coma.
Annie was born at the end of June but wasn’t allowed to be brought into intensive care for 2 weeks, which was really difficult.”
How long were you in hospital?
“I spent six months in a specialist hospital, then six more in my local hospital. I was fed via tubes for ten months. I spent 12 months practically laid on my back. The road to recovery was very long and challenging, but I was determined to get home to my family, especially Annie, who was 9 months old when I finally left hospital.
When I eventually left hospital, I’d spend a lot of time working with physiotherapists and a local hydro-pool was a big help. 9 months after leaving hospital I ran 2km for the first time. It nearly killed me, but I proved to myself that I can do this again!“
How were things after you recovered?
“It became clear quite early on that I’d never go back to how I was before the attack. My biggest struggle since then is the pseudocysts (build-up of pancreatic fluid) developing on my pancreas. From 2014 – 2016 I had various cysts drained, eventually resulting in major surgery in Germany (as no surgeon would take it on in the UK). Between 2016 and 2020 I had other related problems including liver infections and gallbladder removal.
From 2020 to early 2022, I enjoyed very good health and even managed to run a half marathon in under two hours in 2021!
Unfortunately in 2022 the pseudocysts started up again and since then, these have been the biggest difficulty to manage. They cause me a lot of pain, fatigue and just make me generally unwell. I am likely to need further surgery in the near future.”
Do you feel you’ve been supported through your journey?
“I’ve spent well over 500 nights in hospital. The support from my friends and family (especially my wife) has been incredible and so important. It’s a lonely old life in hospital for so long, and you often feel like you’re taking one step forward only to be knocked back a mile. I try and stay in the moment and cherish small victories!
Despite over 500 nights in hospital, no healthcare professional has ever sat down with me and asked how I was. No one really addressed my mental health.”
How are you now?
“My health is a big part of our family life, but it’s not a negative part of it. We try and live life to the full, in fact, as I write, we are packing for Turkey this weekend! I’ve also become a lot better at making relaxing enjoyable since my illness.”
What do you want the future of pancreatitis to look like?
“There’s a lack of expertise, a defined pathway and a central hub for pancreatitis and the ongoing effects of it. When my mum had stomach cancer, she had a whole team of experts looking after her. There was someone to talk to for all aspects. The same needs to be done for pancreatitis. I’ve ended up having 4 operations abroad due to my private healthcare.
Guts UK does such great work. Without their research, we’ll never have the answers, and they’re building a community, so we all feel heard and less alone. The pancreas is so important. It’s a difficult organ to understand, but that shouldn’t put us off the challenge of doing so!”
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is dedicated to finding an effective treatment, a cure for this misunderstood and underfunded condition. We are building a community affected by pancreatitis, comforted in knowing they’re not alone.