This is Daniel's pancreatitis story, as told by his wife Karen.
Daniel was a vibrant, strong, and healthy 51-year-old man. He loved to golf, ski and watch football. But most of all, he enjoyed spending time with our daughter Millie who was seven years old.
On Tuesday 10th March 2020 he collapsed at work. An ambulance was called. I raced there to find him writhing on the floor in pain and vomiting. He’d been fine that morning.
Investigations at A&E confirmed acute pancreatitis. Daniel was still in immense pain despite strong painkillers. He was admitted late that night and I returned home, worried.
This wasn’t our family’s first encounter with pancreatitis. Over 10 years ago I had started a medication called azathioprine for my Crohn’s disease, which caused me to get it. This settled once I’d stopped the medication and with rest, I was fine. In 2012, Daniel’s brother Simon was taken seriously ill with pancreatitis and sadly died a few weeks later. Simon had several other health problems, so we said ‘He’s not Simon, it’s different. Daniel’s much stronger and healthier’.
During the night Daniel was moved to intensive care. When I visited, he looked dreadful but was chatty as his pain was more controlled. He said he’d had the odd stomach ache over the past few weeks, but put it down to overeating.
At 4.30am, ICU rang to say Daniel was struggling to breathe and they were putting him on a ventilator. I was shocked at the rapid decline. Over the next 36 hours, he deteriorated further with multi-organ failure. His pancreas was dying and the dead tissue, infected fluid and inflammation was affecting his whole body. On the Friday we were told he may not make it through the night. I’ve never been so pleased to hear the birds sing the following morning and see Daniel still fighting.
Over the next few weeks his organs needed less support, but we didn’t take anything for granted as we knew things could change rapidly. We were so full of hope for each little step in the right direction.
At this point, COVID had hit the UK. ICU reduced their visiting, but on the 25th March, it stopped completely. I was floored. I needed to see him, hold his hand and talk to him. He was still in an induced coma, so I couldn’t ring and speak to him. How would he know we were still there for him?
I’d get updates from ICU, but sometimes I had to redial them 50-60 times. Whilst some nurses were amazing with the information they gave me, some were not. Eventually I managed to arrange a video call. It was so nice to see him, and the nurse was lovely.
Over the next week they tried to lessen the sedation and ventilator support and wake Daniel up. As his pancreas was still in the inflammation phase, they were unable to drain off any of the dead tissue and fluid.
On 10th April 2021 it was Good Friday and one month since Daniel was admitted to hospital. Daniel was doing well and was awake. I got a video call with him. His face looked thin, but his beautiful eyes were open for the first time in weeks. He was too weak to speak, but mouthed to the nurse to ask if it was really me. She said yes, and he mouthed to me ‘I love you. Tell Millie I love her too’.
Five days later on the 15th April 2021, I had a call at 4.30am again. Daniel was extremely ill, and they told me to come to hospital. His bowel had perforated, and he had become septic. A decision had to be made to make him comfortable or try operating. Given his ill health, I was told he may not survive the operation. Daniel had fought so hard for the last five weeks to stay with us, I needed to give him the chance to continue that fight.
We went ahead with the surgery and the consultant agreed with our choice. The surgery was successful but soon after, Daniel became critically unstable. He was dying.
Myself and Daniel’s sister were there as the life support was turned off, he slipped away peacefully.
I arranged for our daughter to be able to come and say goodbye to her daddy. She hadn’t seen him since he became ill. I felt it was important for her. The nurse looking after Daniel was amazing. She had taken Daniel’s fingerprints, his handprint in clay and a lock of his hair. She placed them in a special memory box for Millie. She also got two matching teddy bears. One for Daniel to keep with him, and one in Daniel’s hand for him to ‘give’ to Millie. They moved the machines and put a warmer blanket on him, so he looked asleep. Our last time together as a family was precious.
Planning a funeral at the height of a pandemic was tough. We opted for a burial as this was this only option where 10 people could attend. But Daniel’s family and friends lined our route to the cemetery to pay their respects. We livestreamed his funeral to allow people to ‘attend’ virtually. Last month, to mark his 18-month anniversary we held a celebration of life to finally come together and give him the send-off he deserved.
We found Guts UK when looking for a charity to support. My daughter and grandchildren wanted to do something in Daniel’s memory to mark his first anniversary. They did a 5km sponsored walk. My neighbour recently did a charity Halloween disco and again donations came to Guts UK in Daniel’s memory. Lastly, my daughter’s class have chosen Guts UK as their class charity this year. They take their spare pocket money and change in, and will be doing a class fundraiser too.
I’m sharing Daniel’s story to raise awareness of the symptoms of pancreatitis, the disease itself and the support available from Guts UK. As men can be particularly bad at seeking medical advice, I’d like to also urge people to go see their GP if they have any ongoing niggles. Early detection could make all the difference."I’m sharing Daniel’s story to raise awareness of the symptoms of pancreatitis, the disease itself and the support available from Guts UK." - Daniel's wife, Karen.
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is the only UK charity funding a research fellowship into pancreatitis. We are dedicated to finding an effective treatment, a cure for this misunderstood and underfunded 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.