This story is part of the Guts UK Pancreatitis Awareness Campaign.
Jörg Walther’s Story
My name is Jörg Walther and I am 52 years old. My story is one of misdiagnoses, severe illness, psychological impact and lost job, but also one of life improving recovery. I had had fairly frequent gallstone colics for ten years before this all started but when trying to get it diagnosed at the beginning they couldn’t find anything. I never knew what they were so I just put up with it. Until Sunday 13th January 2013, that is. I was actually between jobs on that one, single day. I’d worked my last day at the old place the day before and was a little apprehensive but looking forward to starting work at the new company the next day. A single day without a job: what could possibly go wrong?
I had a bit of a treat for breakfast – some croissants with lots of butter. I think that triggered it. By late morning I had excruciating abdominal pain, the worst pain in my life. I’d lost my appetite, had cold sweats, felt nauseous and vomited lots. I was in a bad state, bad enough for me to call an ambulance, which I’d never done before in my life. The Paramedics unfortunately misdiagnosed my issue as a norovirus infection. I’m not sure why they didn’t pick up on the right condition: did they not ask they right questions, did I understate the level of my pain or is pancreatitis just too rarely seen by Paramedics? I still don’t blame them, even though things could have turned out a lot simpler. A week later, as it hadn’t improved I went to see my GP, who stuck with this misdiagnosis. “Give it a few days, it’ll get better”, he said. By day ten I was still at home and instead I’d deteriorated. My wife got very worried, took charge and insisted I was taken into hospital. Once there I had my correct diagnosis: acute pancreatitis caused by gallstones. I’d never heard of it. I hardly knew what the pancreas does. Nor did I know that there is no medication for pancreatitis. Nothing can really be done to fix it. I got some intravenous fluids and pain relief, which worked wonders, but that’s about it.
On day 12 in hospital the doctors then made a questionable call. Despite an MRCP (an MRI scan) showing up a complication of multiple pseudocysts they thought I was on the mend and discharged me. I believed them and was glad to get back home. Two days later I was back in hospital, extremely dehydrated. In the evening a nurse moved my bed closer to the ward window of the nurses’ station. All I remember thinking ‘’what is this fuss all about’’. Next thing I woke up in ICU with sepsis. It was caused by an infection in one of the peripancreatic fluid collections, one of several complications. Now the diagnosis was upgraded to severe acute pancreatitis and sepsis. They gave me a 50% chance of survival, although they only told us that much later. I was too delirious and hallucinating from all the drugs to have been able to understand anyway. Luckily they caught it early enough as every hour counts with sepsis. I had made it and I survived without any significant physical problems. Still, I was now in such bad shape with severe acute pancreatitis that I was transferred to the regional specialist hospital – QMC in Nottingham. I remained very poorly for a long time and I was going to stay there for two further months; three months in hospital altogether.
What really got to me and still affects me mentally is how this illness turned me from a fit and healthy person into a helpless wreck almost overnight. You’d kind of expect this after a serious accident, but after just eating a croissant?! More than the fact that I nearly didn’t make it, it was all the things that happened to my body; to me. I’d lost my normal me. The ‘normal’ I had taken for granted. Because of pancreatitis I literally couldn’t eat for months or if I did brought things straight back up. I lost weight fast. All the time. My body was shrinking. I lost weight even though I was just lying in bed and despite being fed via an NJ (nasojejunal) tube straight into my small intestines. I lost 30% of my body weight during those three months (about 30kg or 4st 10lbs). It seemed nothing could halt the weight loss. When would it stop? Would it stop?
In all this time I was unable to move about. I was just too weak. Most days I barely had the energy to sit upright in a chair. After only ten minutes sitting up I had to lie down again. I was also tied up with lots of wires and tubes. There were eight different wires and tubes to and from my body. This made moving and getting out of bed very tricky. I was nervous of moving about especially after one day one of the drain tubes got caught and pulled out, leaving me staring at a hole in my abdomen. I had so little energy that most days I did nothing but my body was so ravaged by this illness it took all my energy. I just lived in the moment. I was embarrassed about the indignity of having to ask for help with personal hygiene, having to ask for the commode, unable to brush my teeth after throwing up because I couldn’t get to the sink two metres away. I could not focus on anything.
One day I broke down, very unlike me. I cried, sobbed, whilst talking to a nurse. I told her how worried I was, wanting to be home for my daughters 9th birthday. I hadn’t seen much of her as she was a bit scared of the hospital and of me. I had changed so much. I didn’t really want her to see me like this, a practically helpless, old, weak man. But I was desperate to be home for her birthday which was coming up soon. Luckily, I had improved so they sent me home for a couple of trial weekends and eventually discharged me. I was home for her birthday. She still remembers me that day as a little, thin, shrivelled-up, weak man, sitting in the corner, wrapped in a blanket, shivering and squinting at things. I was only just about there, but I was there.
One of the worst aspects about severe pancreatitis is that it is a lesson in patience. No-one can tell you how long it will take. There was just no end in sight, no focus on when life might resume. During all of this, whilst my body struggled to survive, I’d lost my job, my families’ livelihood. I got ill the day before I meant to start a new job. I wasn’t covered by any sick pay. I was not earning any money. Nor could my wife earn any, having to look after our young daughter and me. Our families don’t live nearby so they couldn’t help. In the end it took eight months for me to get back to some sort of normal. A very long time.
Whilst in hospital, being helpless, unable to do the most basic things by myself, I simply could not imagine getting back to any kind of normal. Physiotherapists helped me walk about. I was childishly ecstatic to be able to walk a few metres once up and once down the ward, but that exhausted me for a day or two. What had happened to me? The day before this all started I could have easily gone for a 20 mile hike and now this. For four months I hadn’t walked more than a few metres on a good day. When out of hospital I walked using a walking stick: I climbed the stairs using the stick’ like an old person. A very old person. I could not picture myself as the normal man I was anymore. My Consultant tried to assure me I would get back to normal, though I simply could not imaging it.
But I was determined. I started to eat more healthily when the appetite returned. I stopped drinking. My pancreatitis was not caused by alcohol but I wanted to do something, anything, positive. So I became teetotal. I still haven’t drunk any alcohol nearly six years later. I took up exercising. I was never a runner, never did yoga before. Now I do both. For the last five years I’ve been running regularly, at least twice a week and over a thousand kilometres per year. I took part in my first ever 10k run in Lincoln one year after my pancreatitis. I’ve now completed seven 10km runs and eight half marathons. I cycled 200 miles from Lincoln to London in two days. Many of these were for charity – the first 10k was in aid of Guts UK (then Core). I love exercising now. I feel better for it, physically, mentally and emotionally. But every single time I go running, every single time – I think about my illness, about how it affected me, about how my body couldn’t move, about that horrible NIV (non-invasive ventilation) mask in ICU, about being scared that the next canula change might hurt and not work, how I was helpless and a shadow of myself, how I just felt worried about simple things, not really understanding what was going on, how there were so many scary things I can’t even remember, how a simple little illness turned mine and my family’s life upside down from one minute to the next.
And all this because the pancreas can get upset when a gallstone blocks the common bile duct. Very upset. Extremely upset. So upset it tries its damnedest to take your body down. And it takes its blimmin’ time about it. A few weeks ago, five and a half years after the first time, I had a recurrence of the pancreas pain. Luckily the episode lasted only three days. They say it wasn’t pancreatitis (no elevated amylase enzyme) but they don’t know what it was. Nobody warned me this could happen. I just don’t want this to become a habit, turn into chronic pancreatitis, or worse. I am worried a little bit which is why I’m even more focused on eating healthily. I’m going to keep running and will remain teetotal of course. I think that’s all I can do. I hope that research can find ways of treating aspects of pancreatitis, for example by reducing inflammation and therefore helping to reduce the duration, severity and impact of this illness.
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 ideas here!
Or join Team Guts UK for 2019 challenges! We have places, so come on board! If you want to run Vitality Half Marathon, March 10th 2019 or cycle in Prudential Ride London 100 August 4th 2019 register here. Let’s go!