Jane lost her daughter Jess to pancreatitis aged just 26. Jane shares Jess’ story as part of Guts UK’s Pancreatitis Awareness Campaign, Kranky Panky.
“What could have been, what might have been, what should have been”.
These words rattle round my head almost every day.
My name is Jane and I am a nurse. I had obviously heard of pancreatitis, but had never had any real dealings with it. My daughter, Jess, was a children’s nurse (since 2005).
After a few episodes of severe abdominal pain, Jess had to have her gallbladder removed. Despite this operation, she continued to have periods of discomfort for a few years.
In late 2008, it seemed to flare up again and following an ultrasound scan and MRI in January 2009, it was found that Jess had a gallstone stuck in her bile duct. Jess was booked in for an ERCP the following month.
I attended the procedure with her, but following the ERCP it was obvious that she was in immense pain. I was told by a nurse that it was ‘wind’ and nothing to worry about, but my gut instinct told me that I should worry.
What should have been a routine ‘day case’ escalated into a nightmare. We were told Jess would have to stay in hospital overnight, so I returned home to collect an overnight bag for her. When I returned, she had been admitted to a ward and was very obviously in absolute agony. She was on her hands and knees on the bed. Eventually, Jess was given morphine and seemed to settle. I kissed my daughter goodbye and told her I’d collect her the next morning.
After a very restless night, I phoned the hospital in the early hours of the morning. They told me Jess had been in a lot of pain most of the night and she’s having a scan at the moment. They suspected she had severe acute pancreatitis. The ERCP had caused her pancreatitis, as dye entered her pancreas causing severe inflammation.
By the time I returned to the hospital, Jess had been moved to a different ward and was on a morphine pump. She seemed in quite good spirits, but as the morning went on she began having trouble breathing. Various healthcare professionals were with us throughout the day and I was aware that they were worried.
At midday, myself and my husband were told they had decided to take her to theatre to insert a central line. She seemed to be in there forever. Then, we were informed she was being transferred to ICU.
Once in ICU, a doctor told us Jess would be on a ventilator for 24/28 hours to ‘give her lungs a rest’. This seemed plausible to me. However, during the night her condition continued to deteriorate. At 5am, we were told she was on maximum support.
My daughter looked restless, bloated, jaundiced and almost unrecognisable.
Throughout the day, Jess was surrounded by loved ones who were talking to her and encouraging her to be positive. But I knew.
Jess suffered a cardiac arrest mid-afternoon. Despite several rounds of CPR, which I couldn’t bear to watch, she sadly died.
All of this was within 48 hours, all her organs failed. My Jess was 26 years old. Her last words to me before she was put on the ventilator were “I’m scared Mum”. Her words will stay with me forever.
The staff on the unit were shocked and upset by her rapid deterioration, but pancreatitis is unknown territory. The stone blocking her bile duct was never located, and wasn’t found post-mortem.
I hope that in sharing Jess’ story, we can help Guts UK raise funds for research into pancreatitis and hope that families reading this will feel a little bit less alone. In Jess’ memory, our family and friends donated and still support Guts UK to this day. We have raised £5,900 in Jess’ honour for Guts UK and won’t stop until a cure is found for pancreatitis.
I miss you so much Jess. We all do. (02.12.1982 – 11.02.2009).Jess was just 26 years old when she passed away as a result of pancreatitis. Please help us make pancreatitis a condition of the past. Donate to Guts UK today to fund life-saving research.
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.