This story is part of the Guts UK Pancreatitis Awareness Campaign.
Amy Lucas’s Story
My name is Amy Lucas, I am 29 years old and I am from Wales. My story is about my battle and on-going fight with severe acute idiopathic necrotising pancreatitis. So that’s the long version but for the average person I just had severe acute pancreatitis and they didn’t know what caused it. Having such severe pancreatitis caused my body to fail me, which has now completely changed me from before I had pancreatitis. I had just finished packing my clothes for my move when I had these horrific shooting pains and there was no place I could get comfy. After a couple of hours of this pain I started to vomit scarily and I felt I was in a horror film. It would not stop and I could feel in myself that something was very wrong. I waited a few hours at home to see if it would ease or stop but it didn’t so my Nanna took me up to A&E. I would never have known that this was the last time I would go out of the hospital for seven and half months.
When I got into A&E the waiting list was just over four hours. A&E staff initially gave me some paracetamol but as I could not keep any food or liquid down it would come back up so it didn’t do anything, but they still counted it as working. As time passed my pain was getting worse and nobody really knew what to do, until I started to deteriorate. When that happened I was rushed to the high dependency unit and stabilised enough to take me for a CT scan. Before I was taken to the scanner and given strong pain killers I had all these machines by my hospital bed and I could hear the staff talking about their concerns with me going there. This was the last thing I remember from that day. What is crazy is that I was rushed to the high dependency unit after three and a half hours so if I had waited the full four hours at A&E I may not have been here sharing my personal story.
I remember bits and bobs for the next few days but some are still quite blurry. I woke up on the ward and I was there with a catheter in and not sure what was going on. Then the following weeks I had scans and was told that they didn’t know what it was. I was sat there day in day out vomiting and in pain and not knowing what was wrong with me. I was deteriorating very quickly and the only people who took it seriously were me and my family, mainly my Mam. Then finally I was seen by a pancreatic Consultant who said I had an acute attack but it was nearly too late. Then one night turned into a horrible nightmare that to this day affects my life and health. I cannot describe the pain I was in that night, but I was vomiting, in pain and literally screaming for help. I then went into multi-organ failure, cardiac arrest and sepsis and was rushed into surgery where the consultants did what they could to stabilise me and relieve me from this pain. My family were advised that I probably wasn’t going to make it but I then somehow fought my way through, and woke up two weeks after, with a pancreatic drain that was flushing my dead pancreas out.
I spent several weeks in intensive care, starting from scratch, and try to build my life and health back. After that I was sent to a ward that specialised in pancreatic disease and was then in a place where they knew what I had and what I needed to get through it all. I was supported by a dietitian who helped with diet and nutrition and I was seen by physiotherapists and other specialists. Sadly, after several weeks on the ward I picked up sepsis again and my organs failed just like at the start of my hospital stay, so again I had to fight my way out of intensive care and start the battle all over again. I was lucky to have some brilliant professionals supporting me and after a total of seven and a half months battling pancreatitis I could leave the hospital. And then the mental fight came…
Even though the care on some of the wards and intensive care was brilliant, nobody told me what pancreatitis was, what did it mean, and how it was going to affect my life. Nobody told my Mam and family members either and they were the ones who would have to help me get through life and my recovery. It is a very scary being told you have pancreatitis, which is quite a nasty disease, and not know the basics. If I am being completely honest I didn’t even know we had a pancreas let alone what its functions were and how it is treated. One thing that many people say is to never go to the internet to look up something you have, as it is never fully correct, but this is what me and my family had to deal with. We had to go and look for information we really should have had explained to us all.
As a young woman I had my past life taken from me because of this disease and I had to learn everything again, even how to eat and walk. I had people, younger people than me, having to do my personal care due to the severity of my illness so the mental aspects I had to deal with were horrific and still affect me these days. Because of how ill I was I now have several health conditions but I beat the odds so I am lucky to have done that. I lost friends from being poorly so it was very lonely at times – and it still is. This is something that you cannot control. I looked online and social media to see if there were support groups or people who have experienced what I have and luckily I found a support group on Facebook, which I now feel saved me. I befriended other patients and from this I learnt how to build my life up and to make the best choices for my health. After being in support groups and seeing how little information there is out there, I decided to join a committee for patients. I have shared my story with others and I supported other patients in my local area who have had pancreatitis, just to give them hope that it they work hard on the recovery they can still live life. Building awareness and empowering patients have become a great focus in my life and because of this I was chosen to be on the NICE Guidelines for Pancreatitis. This has been life changing for me. I feel that by being on this committee I could have possibly improved care for patients, which I may have not had in my journey. This is something positive that came from me being ill and I am now determined to make every patient know what is going on with their health and help provide them with support.
NICE guidelines on pancreatitis
Guts UK are keen that everyone affected by pancreatitis is aware of the new NICE guidelines for pancreatitis. NICE (the National Institute for Health and Care Excellence) was set up in 1999 as a special health authority to reduce variation in the availability and quality of NHS treatments and care. It provides national guidance and advice to improve health and social care.
The new pancreatitis guidelines include recommendations on how to manage acute and chronic pancreatitis. Health professionals are expected to take those recommendations fully into account, alongside the individual needs, preferences and values of those who they are looking after. It is not mandatory to apply the recommendations and the NICE guidelines do not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
What can you do?
Join in our Kranky Panky Weekend fun and fundraise for more pancreatitis research with Guts UK. Check out some of our fun ideas here!
Guts UK is proud to fund the only fellowship into pancreatitis in the UK. However, one fellowship every three years is not nearly enough for this potentially deadly condition with no specific treatment. We need to do more. Help Guts UK fund more research to find a treatment for pancreatitis by donating today.