Terry's story, as told by his daughter Adele as part of Guts UK's Kranky Panky Pancreatitis Awareness Campaign.
On Wednesday 11th September 2019, my dad was taken to hospital with abdominal pain. I visited him in the hospital the following day. I could tell he was in a lot of pain. His oxygen levels were slightly low but the hospital were monitoring him. However, I had no idea what was going on or how things would unfold. My dad was talking to us and sat up in a chair, but we could clearly see he was in pain. I never, ever thought this would be the last time I was able speak to my dad.
Three days on (on Saturday) I received a phone call from my mum whilst I was at work, “Adele, your Dad is being taken into critical care”. What? Why? My knees went weak and I was scared. I left work immediately and drove to the hospital. My dad seriously ill with pancreatitis. Pancreatitis? Had I even heard of pancreatitis? If I had, I hadn’t realised it was so serious. I found out my dad had multi-organ failure and was very, very ill. He was still awake at this point, but he looked terrified. I have never seen my Dad look scared. Within no time at all, he was put into a medically induced coma and placed on a ventilator. From that moment on, our lives were in utter turmoil.
Dad spent 8 weeks in critical care suffering from a sudden case of severe, acute pancreatitis, caused by a gallstone which was blocking his bile duct. No symptoms. Dad hardly ever visited the doctors for anything in his life. He had never been in hospital.
Suddenly, he was on daily dialysis. His weight plummeted drastically, though his whole body was swollen. Dad’s hands and feet were like balloons. I was constantly watching the machines, checking his blood pressure, panicking every time I heard a beep or when the numbers dipped or raised. He just looked horrendously ill and he didn’t even know.
On occasions, the doctors would request to speak to us in a private room. We sat there with our hearts in our mouths, expecting to be told there was nothing more they could do. We were told how serious his condition was, that his pancreas was necrotising and that it was too dangerous to even attempt to operate. But nobody ever told us if he was going to pull through this.
I desperately, desperately wanted them to tell me if dad was going to survive or not, but they couldn’t. But I knew. Deep down I knew.
Things were so bad, everything was failing. I had no idea of the devastation that severe, acute pancreatitis wreaks on the human body. I could not believe what was happening. Every night I googled “necrotising pancreas”, “mortality rates”, “kidney failure”, “sepsis”. I was reading medical journals at night when I couldn’t sleep. I knew it wasn’t helping, but I felt helpless and tortured.
My dad fought and fought against the horrific pancreatitis that raged inside him for 8 weeks. He fought right until the end. In his final few days, they attempted to operate to try and remove the dead pancreas. We had just arrived home from the hospital, when we got a call informing us that he had suffered four heart attacks on the operating table and they said his insides were like soup. We rushed back to the hospital. The 20-minute journey felt like longest journey ever, like driving through mud. We thought that was it, that was the end, but dad was still with us. Back in his room, he looked peaceful but we were very, very scared. We stayed at the hospital that night, waiting for a knock on our door with the worst news. It didn’t come that night.
The day after, on 7th November 2019 my dad’s life support machines were turned off. My mum, my sister and I were with him, holding his hands. He was leaving us and there was nothing we could do. We couldn’t stop it. It was the most horrendous experience of our lives. It’s still difficult to think about. Almost 12 months down the line, I think we still feel in shock and still feel very sad.
My dad, Terry was 67. 67! He could have had at least another 20 years of life. He was fit and healthy, but pancreatitis totally destroyed him in a matter of weeks. He loved walking with friends and family, travelling with my mum across Europe in an old transit van. He was an incredible musician. He could play anything and everything.
So much more research is needed into this horrific condition, and this is the reason I am sharing our story. When dad passed away, I set up a Facebook fundraiser for Guts UK in his memory. Friends, family and all those who dad had touched in his life donated in his honour. We raised almost £600 for Guts UK.
Guts UK is the only UK charity funding a research fellowship into pancreatitis.
We are dedicated to finding an effective treatment for this devastating condition. People are suffering, people are dying, all because of a lack of knowledge about our guts. Join our community and champion our cause by donating to our life-saving research today.Be a part of life-saving research by donating to Guts UK today.