Ken's pancreatitis story, as told by his daughter Rachel as part of Guts UK's Pancreatitis Awareness Campaign - Kranky Panky.
On the 28 February 2019, my dad had a ‘radical open nephrectomy operation’ to remove his left kidney. He was fit and healthy, so he sailed through it and was walking in the Peak District within a few weeks.
But shortly afterwards in late April, he was violently sick. He thought it was food poisoning. But it was only afterwards that I picked up that the symptoms were similar to pancreatitis. He said that his sick was ‘black’, but it must have been the dark green bile that I saw him throw up later when he was in the hospital.
These bouts of sickness occurred a few more times, he discussed this with the doctors in the six-month check-up following on from the kidney operation, but nothing was flagged.
The last time I saw him (apparently) well, was on the 14 November 2019 at my PhD graduation. We took this photo together (left).
On the 26 November 2019, he had been on a walk into town and came home to do work. Then he suddenly started projectile vomiting. He used heartburn relief and said, ‘when I have one these, it goes away’, but this time he couldn’t keep it down.
Dad sat up all night in a chair in incredible pain, until enough was enough, and my Mum took him into the urgent care centre. He had a urine test, which came back with ‘high amylase and lipase’ and he was immediately given a bed in a ward at the nearest hospital. Within 24 hours he was in intensive care, diagnosed with pancreatitis and sepsis. This was a complete shock for all of us, as we had no idea he was unwell or the severity of it.
I had never heard of pancreatitis before. I was told it could be caused by gallstones or alcohol, none of which applied to my dad. His cause was ‘idiopathic’, which meant that we did not know the cause. Though our family suspect this could have been a complication or damage that occurred during the kidney operation.
Pancreatitis is an ugly disease with no cure. All the doctors can do is put you on life support, undertake weekly MRI scans, drain the pressure from the abdominal cavity with a stent, and wait. Dad’s pancreas started to necrotise and die; and this caused his lungs, heart, and his one remaining kidney to fail. He was on dialysis, receiving blood transfusions, and given a lot of medication. Dad was placed on a ventilator to help him breathe, which meant he could not speak. He had ICU delirium, so he wrote notes asking for me to bring help and a ‘lawyer’.
My dad was only on the ward for five weeks. We were never told he was dying, but that he was ‘critical’ but ‘stable’. He kept on deteriorating and he died on 2 January 2020. He was 69 years old.
Afterwards, I found that he had heartburn relief in his rucksack, pencil case, beside his bed. When I discussed this in the debrief with his consultant, he told me ‘pancreatitis feels like heartburn’.
Guts UK gave me a lot of support throughout my dad’s time in hospital, and the days following. The stories of others, published as part of the Kranky Panky Awareness Campaign, helped me to understand the disease.
I have been raising money for Guts UK to fund further research into pancreatitis in the hope that one day there will be a cure, and will be aiming to participate in the Hackney Half Marathon in May 2021.
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is the only UK charity funding a research fellowship into pancreatitis.
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.When you donate to Guts UK, you fund research that has the potential to save lives. Together, we can get to grips with guts. Donate to Guts UK today.