Steve's story, as told by his husband David as part of Guts UK's pancreatitis awareness campaign, Kranky Panky.
I will never forget 11th December 2019 and the terrible phone call – my darling husband Steve crying “help me, help me, the pain, the pain. I can’t stand the pain…” During the week Steve worked away from home, staying in a rented flat and coming back home at the weekends. He’d been suffering from a mild tummy ache for several days, but this call came completely out of the blue.
I got to the hospital around 4.00 pm. After a 12 hour wait in A&E, doctors suspected he had a blockage caused by a gallstone and he was admitted to a general ward. The next day, after lots of blood tests, one of the consultants said he had been diagnosed with acute pancreatitis. Neither of us had heard of this before but the consultant explained what it was and said that the severity of cases vary enormously; “some are like kittens and can be tamed in a few days, but others are like tigers and can take months”. The mention that this could take months was very shocking. It also became clear there is no actual treatment for pancreatitis – the only thing to do is support the vital organs, wait and hope that the inflamed pancreas settles down by itself.
During the day he began to deteriorate, needing oxygen to breathe. He was admitted to Intensive Care and connected up to dialysis and blood transfusion machines, intravenous fluids, nasal feeding tube and many other monitors. I was told his chances of survival were now less than 50%.
During the early part of his illness when he had just been admitted to ICU and the doctors has warned he was very seriously ill, I’d been beside his bed holding his hand until the early hours of the morning and had fallen asleep. I woke up and said to him ‘sorry, I don’t think I’m being much use at the moment”. Even though he was in absolute agony, my husband looked at me with his gorgeous dark brown eyes, smiled and said “you might not think it, but you being here means the world to me”.
Over the next month, Steve remained in ICU only showing slight improvement. He started suffering severe muscle loss. Steve could hardly move his limbs and couldn’t walk or support his own body weight. One of the nurses told me it could take up to 2 years for him to regain full fitness.
Around the middle of January, Steve was well enough to be transferred to ICU closer to home. Over the next 2 months despite lots of setbacks, he made some progress. However by the middle of March, Steve started developing a severe infection around the pancreas – his blood pressure was dropping dangerously low, his blood sugar fluctuating wildly and he starting to suffer severe pain again.
Despite the efforts of the doctors, my husband eventually passed away in the early hours of Sunday 15th March.
In our 19 years together, Steve and I never had one real argument. Steve was always there for me when I needed him, we managed to finish each other’s sentences all the time, and knew what each other were thinking so often it was uncanny.
Our final words to each other were “I love you”. Steve was only 54.
Looking back over the whole experience, a few questions stick in my mind:
Firstly, what caused the pancreatitis? We never really got an answer. Several times a gallstone was mentioned but it still isn’t clear if this was actually the cause or not. Years previous too, Steve had been diagnosed with a high level of triglycerides and this can potentially cause damage to the pancreas. Treatment to try and reduce them caused him unpleasant side effects, so he decided to stop taking the medication. I guess we’ll never know what caused it.
Secondly, could Steve have done anything to avoid it? There doesn’t seem to be anything that would have acted as a warning sign to maybe change his diet, lifestyle or somehow reduce his risk factors. Maybe the fact that he had been suffering tummy pains for some time could have been a ‘red flag’ but few go to their doctor because of a tummy ache. Even if he did, would pancreatitis have been considered as a possibility?
The final question is – why isn’t there an actual treatment for this terrible and deadly disease? With things such as cancer and heart disease, there seems to be a huge range of treatments available to improve chances of a good outcome. Watching someone slowly and agonisingly suffer whilst all the medical team can do is just cross their fingers and hope, is truly awful.
In Steve’s memory, we are raising money for Guts UK. Together, we have managed to raise over £7,000 in his honour. We hope that from our unbearable loss, we can make a positive change. We want to fund research that gives those who suffer a better chance of surviving.
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.We want to live in a world where pancreatitis is a condition of the past. Guts UK is the only UK charity funding a research fellowship into pancreatitis. Let's get to grips with guts. Support Guts UK today.