Jörg Walther

Survivor

In January 2013 I was looking forward to starting an exciting new job. I’d finished the previous job, where I’d worked a lot of overtime and silly long hours, a week ago. Sunday the 13, 2013, the day before I was meant to start the new job, began with some abdominal pain that got worse to the point of unbearable. I’d had occasional (what turned out to be) gallstone pains for years but this one was worse. I’d always wondered if the pain was bad or if I just had a low pain threshold. Turns out it was bad – so bad that I called for an emergency ambulance.

The paramedics came but misdiagnosed it as norovirus. Had they taken me to hospital, it might have been different. Eleven days and a GP confirming the misdiagnosis later, I hadn’t recovered and got worse. This time luckily my wife insisted I was taken to hospital. She couldn’t take me because our daughter was also ill.

It didn’t take the A&E department long to find the right diagnosis – gallstone pancreatitis. (Sepsis and Gallstones) I stayed in Lincoln (England) County Hospital’s Digby ward (the same as Phil Crow). I was discharged about two weeks later after an ERCP and MRCP but despite pseudocysts on my pancreas.

I was glad; I really wanted to get back home and wanted to get away from the negative sides of hospitals (noisy at night, other patients with their own issues disrupting the peace, etc), although my wife wasn’t too sure. She was right. Three days later she got a GP to do a home visit (unheard of normally) and he straight away saw I was dehydrated and didn’t look good and arranged for an ambulance and a hospital bed. Back I was in Lincoln County Hospital.

They put me back on a fluid drip but because of the dehydration the doctor proceeded to manually squeeze half a litre of fluid straight into my veins in one go. I remember thinking ‘this is odd, must be bad.’ That wasn’t the only thing. Over the next few days I deteriorated. The diagnosis was changed to severe acute pancreatitis. The High Dependency Unit’s outreach nurse came and introduced himself ‘just to get to know me. It doesn’t mean you’re going into ICU.’ It did. They said it was because of breathing difficulties but never answered my wife’s question about sepsis.

It took me eight months to find out why I really went into ICU, when I went to an ICU follow-up clinic in October. It was because of sepsis in the pancreatic pseudocysts. I spent 8 days in ICU, on morphine PCA (patient controlled analgesia) and with a horrible NIV-mask (non-invasive ventilation). I had weird hallucinations and can’t remember much but wasn’t scared. Luckily I got through. I now think this was because of the antibiotics I had already been on and good ‘obs’ monitoring on Greetwell ward; they even moved me right next to the nurses window the evening before I went into ICU. Guess they could see it coming.

A week after I had been moved back from ICU to Greetwell ward I was transferred to a specialist hepatobiliary unit at QMC (Queens Medical Center) in Nottingham because I’d lost a lot of weight and aside the pseudocysts, I also now had several fluid collections. I was put on a 24/7 NJ enteral feed, as after 7 weeks I still couldn’t eat or hold onto what I could eat. And I went back into a period of one or two weeks with frequent 38+ C fevers, heart rates of 120 or so bpm, and fast breathing, and low oxygen saturation (I was put on Oxygen tube). This was sepsis back again, although this time it didn’t warrant a move to ICU. I was so weak I couldn’t move about. Never mind it being tricky with a saline, antibiotic, anti-fungal and paracetamol drips from up to two pumps, the NJ tube, its pump, two drainage bile bags and the oxygen hose; I was just too weak to think about moving. (Sepsis and Fungal Infections) I had also blown up with water retention to resemble the Michelin man. The nurses wanted me out of bed for at least some time to aid my breathing, etc, but often I was exhausted from sitting after 30 minutes or less and went back to bed.

In amongst all that, I had also got ‘hospital acquired pneumonia’; the third life threatening illness. At least the winter in England this year was long and horrid and I didn’t miss out on any sunshine. In all that was the uncertainty. The consultants could never tell me how long this would take. I’d already given up hope of starting the job. Although the company had been very supportive and kept the job open for me initially, they did have to cancel the contract after three months. I really didn’t know how long I had to remain in hospital and I started to get very emotional about my daughter’s birthday, which I didn’t want to miss.

Things suddenly started to move quickly and I could go home for a trial weekend at home. I couldn’t believe it and was excited but mostly scared. I’d become institutionalised. The trial week-end and one a week later went well, despite an NJ-tube hiccup (almost literally) and finally after three months in hospital, three biggie illnesses, hardly any muscles left and unable to walk for more than 2 minutes I went back home.

I was still on an NJ feed but only night times. I had lost 29% (28kg, 4.5stone, 62 pounds) of my body weight and still very weak. However I started to recover and was able to return to QMC four weeks later for an elective laparoscopic cholecystectomy (or as my wife called it ‘having the gallbladder whipped out’), was able to say hello to many nurses I’d grown fond of, and came back home the next day.

Eventually I recovered and regained some strength and stamina, walked about and started cycling again. But there was still the niggling doubt about a job. I had none. Pancreatitis had stolen that one. We hadn’t had an income for many months and my wife – a self-employed artist – was too busy looking after me to do any work.

Luckily I did find another exciting job again, although a long commute away, I love it. I almost forgot what work was. Almost eight months after it all started I was well again to start work.

I remember seeing posters at QMC, when wheeled about for one scan or another, warning staff about sepsis and thinking ‘wow, this must be serious stuff. Glad I haven’t got it.’ Little did I know that at that point I’d had it, possibly twice. But perhaps the posters indicate a shift of awareness of the seriousness of sepsis and a quick diagnosis and treatment and perhaps I’d already benefitted from this raised awareness. But there’s still some way to go.

I still have a couple of side effects, a slight pain in my left lung from multiple left-sided pleural effusions, and a numb feeling in my right leg. The consultant said it could take a year or more to heal. It was an unlucky start to the year for me but overall I guess I was lucky and, as one consultant said it I as a survivor.