This story is part of the Guts UK Pancreatitis Awareness Campaign.
Wayde Lefevre’s Story
My name is Wayde Lefevre and my story started in 2008 when I had a sudden onset of horrendous indigestion-type pain. The church I was in at the time called an ambulance but a paramedic in a car turned up and told me to go home and have some paracetamol. So I went home but the pain was getting worse and worse, I had terrible diarrhoea and I was being sick; I couldn’t stand up straight, I couldn’t sit down and I couldn’t stay still. It was the worst pain in my life. After me saying no to my mom being called they finally called her anyway: she got to me within 30 minutes, took one look at me and said ‘Right, get in the car, were going to the hospital’. Got to the local hospital and I was laying on the floor in absolute agony, I remember being told off for laying on the floor but the pain was horrendous. Next thing I remember is being in the High Dependency Unit (HDU) and my mom and dad being at my side. This was 12 days after being taken into hospital. Two nights beforehand they had been told to call the family in, as I wasn’t going to make it through the night. My body wasn’t responding to medication and I was getting worse. I was still being sick even with a feeding tube to rest my gut; I had ballooned to double my size and I was completely out of it. Then on day 13 I suddenly turned a corner and within 2 days was on a normal ward and they were talking about home… I was diagnosed with severe acute pancreatitis and I was told my pancreas had 90% died and gone black.
Fast forward to 2013 and I had had no issues at all since I recovered from that very bad attack. I even went on to have two children and got married, we had our own house, etc. In December 2013 I had my parents round for tea where I cooked a lasagna. I took two bites and felt horrendous indigestion; I didn’t have the rest and I felt awful. Deep down I knew this was acute pancreatitis but didn’t admit it. I spent the night on the sofa crying and in horrendous pain, I didn’t sleep at all. The next morning my husband got up, went to work and left me with my girls. I managed to get an emergency appointment at the doctors; the effort it took to get there with two young children – my youngest being two at the time – was horrible. The GP said it sounds like pancreatitis and would like me to go to the hospital for blood tests to confirm. I was very stubborn and got a taxi to my mom’s instead, where I just lay on the sofa crying in pain, having horrendous spasms in my stomach. My mom kept threatening to get an ambulance but I refused and told her my husband would take me to hospital if I was no better at 3pm. The pain got worse and worse and I skipped the blood tests and went straight to A&E. I was taken through straight away and diagnosed with acute pancreatitis again. This time wasn’t as severe as the first time but they still talked about taking me to intensive care if my condition didn’t improve within the day. Luckily again I started to improve although very slowly. I begged on the 24th December 2013 to be released from hospital so I could spend Christmas with my family. The doctor reluctantly agreed as long as I promised to rest. Two weeks later a sudden onset of pain and that indigestion feeling returned and I had an ambulance out to me. Again I was diagnosed with acute pancreatitis only this time scans confirmed I had permanent damage and calcification on the head of the pancreas. I was then diagnosed with chronic pancreatitis.
Moving onto 2014 I had a relatively good year. I think I was admitted for chronic flare ups three times that year but from 2015 things took a turn for the worst. From then up until November 2017 I was in and out of hospital every couple of weeks with that same horrendous pain that floored me each time. However each time bloods kept coming back normal. I begged and cried at every Consultant appointment to do something as I just couldn’t cope with the daily pain, the daily nausea and the constant indigestion. I was a young mom, for goodness sake, and I couldn’t get out of bed most days due to pain and sickness! Eventually I was referred to a Consultant at Hammersmith hospital who in November the 20th 2017 sent me for a Whipple procedure. During surgery (which lasted 14 hours) they found that my pancreas was a lot worse than they ever imagined, with the neck of the pancreas completely disintegrated gone, disappeared. There were stones stuck in the duct, calcification throughout the head and the body of the pancreas, and a little in the tail. They took away the head and most of the body of the pancreas away, and my gallbladder – which also was black with disease and full of stones out. They also removed part of my stomach and I think part of something else but I can’t remember. I was optimistic that surgery was going to be my answer and I was going to be better and I could get back to my life and be the mom my kids deserved. At this time I was doing it alone as my husband had left me in the July. The pain to begin with was a lot better and I felt great but slowly and slowly the pain has again gotten worse and worse to the point it’s just as bad if not worse now than before my operation. Doctors confirmed that the rest of the pancreas is atrophied, the duct is swollen and dilated again, and calcification is present. They are now talking about another operation to try and help but that wont be any time soon.
During my journey with chronic pancreatitis they have preformed many procedures to try and help. I have received ERCPs, lithotripsy treatment (shock wave treatment of stones), celiac plexus block (nerve blocker), stent treatment and another type of nerve blocker that I cant remember the name but nothing has ever made a difference. I am now at the stage where I just want it to end; I want the constant pain to stop, the flare ups to stop. Already in 2018 I have been in hospital four times with chronic and acute attacks and I’m not sure how much more of this I can take. I’m not the parent I want to be i feel like I’m failing my girls daily, and that they would be better off living with there dad! I am fed up of taking pain relief, which again has just been increased. I hate having to cancel plans all the time because my stupid body has yet again failed me. The only thing that is stopping me from ending it all is my girls! I know that’s horrible to say and people don’t want to hear it but the constant battle with doctors, nurses, and people who you need to trust and believe you, gets you down. More doctors need to learn more about pancreatitis and need to understand that just because your bloods come back normal doesn’t mean you aren’t having an attack and aren’t in horrendous pain! I’m scared to eat because it causes pain, or makes me feel sick! I’m scared I’m going to die because of an acute attack again. I’m begging people to understand that I’m not faking this, I’m not lying about my symptoms and I’m certainly not making it seem worse than it is!!! I just want doctors to take the thing away. Anyway, thank you for reading my story so sorry it’s so long and scatty, it’s hard for me to write my feelings and things out properly due to dyslexia but anyway this is my story and my battle with chronic pancreatitis.
What can you do?
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