"So, Doctor, how long will I need off work?"
"Hmm... you're self employed aren't you"
"Yes"
"Oh, no doubt you'll be back to work the following day!"
"Out of curiosity, if I was an employee, how long would I have off?"
"Oh, you'd be signed of for at least 4 weeks on full pay."
Says it all doesn't it! The pluses and minuses of self employment. Fan bloody tastic.
And so it began. On the 15 July 2010, I was admitted for my ERCP which is where it all went wrong. They completed the procedure and put me on Digby Ward in Lincoln County Hospital. My wife, Helen, is a nurse. She was there most of the time. She was watching me. Watching them. Watching them watching me and thank goodness she did. A male nurse was in charge of me. Helen wasn't happy with my care. It became something of a battle as he would not believe my wife. He even hid my notes from her. JESUS CHRIST MATE, my f*@king life is on the line here and you're playing games...playing GOD!?!
Here's part of an email Helen sent a friend around that time...
I had been telling him [the nurse] all day Phil was getting sicker (that was the day after the endoscopy) & he wouldn't even do a set of obs- none were done from 7am till 9pm by which time Phil was barely conscious, they should have got a doctor & called Intensive Care outreach nurses- which a qualified nurse should know. As a relative you should be able to trust the doctors/nurses & not have to diagnose yourself!!! I really believe Phil wouldn't be here now if I hadnt kicked off big time. I ended up leaving my stepdaughter with her Dad & going to EAU to get one of the sisters I work with to come up to Digby to cannulate Phil (even though I do bloods, cannulas etc they wouldnt let me do it!) & get fluids going. 2 hours later he was in ICU!!! Im really angry about it all & think if he had better care initially maybe this wouldnt have been so bad.
Anyway hes having another CT scan today to see if there is still a pocket of puss in his abdomen- Ive got a sneaky suspicion that there is but I hope not for Phils sake. If CT is ok they will take the drains out, watch him for a few days to make sure he doesn't spike a temp & then hopefully let him home. He is so weak now, all his bones stick out except for his tummy which is swollen. Before this he did triathalons, ran half marathons, 10ks etc & was really fit. & because he is self employed we've been living off my part time wage with no clue when he will be able to work again.
And that's how it started. 4 weeks in ICU with a couple more operations thrown in. I hardly remember any of it. Scenes come and go. I get flashbacks all the time- nothing nightmare-ish- none of it I remember as nasty- I kind of just took it for granted. I didn't for a minute think- hang on, I should have only been in for a day or two- what's going on? Maybe I should have... maybe it was the drugs they had me on... who knows.
NOTE Feb 2014: Incidental to all this, just discovered some extra information... 27 August, I was discharged for a few days. I remember the Doctor telling Helen to keep an eye on my temp and if it 'spiked' I was to go back immediately. 2 September I was back in. To be fair I was still very ill at that point (but I did not want to admit it as I was so happy being home)
17 September I was allowed home for the weekend. I remember the registrar didn't want me going home but Mr Barlow overruled her (thank goodness!)
So, let's allow Mr Barlow, the consultant that saved my life continue the story. Here's some extracts from a medical report he sent me for my insurance company (ha, now there's another story!- critical illness cover- more on that another time!!)
diagnosis:
- gallstones
- choledocholithiasis
- acute pancreatitis
- biliary peritonitis
- retro-peritoneal abcess
Subsequently he developed acute pancreatitis. He underwent a laparotomy to perform a cholecystectomy to explore the common bile duct on the 17 July 2010.
He failed to make a satisfactory recovery from this operation...
...he underwent a further laparotomy on the 28 July 2010. This revealed bile within the abdominal cavity from a leak in the common bile duct. The following day his condition had deteriorated and arrangements were made for him to be transferred to a specialist hepato-biliary unit.
On 30 July 2010 his condition deteriorated further. He was requiring mechanical ventilation and cardiac support. The condition was too serious to transfer to another hospital.His critical condition was considered life threatening. He underwent further surgery on 30 July 2010 and a tube was inserted into the common bile duct to drain bile.
He spent many weeks on the intensive care ward on a life support system but gradually there were improved conditions such that he was able to return to the ward. However his recovery was very slow and he continued to develop signs of severe infection indicating septicaemia. Repeated CT scan showed an extensive abscess from the pancreas down around the kidney and into the pelvis. He failed to respond to antibiotic therapy and required further surgery on 5 September 2010 to drain this abscess. This improved the condition but has still not resolved the problem.
Mr Crow was finally discharged from hospital on 23 September 2010...
...he is weak...he has lost a considerable amount of weight...limited mobility....intermittent fevers and still has a drain in his abdomen draining pus from an abscess cavity. It is likely that a further procedure is needed to resolve the problem.
And so there you have it. After I was discharged, I was in and out of hospital 3 times a week having my drain holes flushed and cauterised to try and help them heal. Katherine, Mr Barlow's Registrar was so helpful and really did go out of her way: bear in mind these were not proper appointments. These were ad hoc ok, I'm available day after tomorrow at 2pm type of arrangements and that was how it worked. If it wasn't for my wife working at Lincoln County, her knowledge and the relationship we built with Mr Barlow and his team, this wouldn't have happened as quickly (and I think speed played a big part in my healing process). How lucky was I?!?!?!
During these first few months home from hospital, my sleeping pattern was totally screwed. I assume it's because of the routine of hospital life; being woken up for medication, obs, other patients, lights etc. I couldn't get back into it at all PLUS I was getting the most horrendous night sweats. And I don't just mean a bit sweaty- this was total saturation and change my PJs up to 4 times in the night! I was sleeping on towels it was that bad. No wonder I was so bloody grumpy! I was even sleeping part of the night downstairs so as not to disturb Helen too much plus, at the time, sleeping upright kind of helped. I was keeping an eye on my temperature throughout this and that was fine. I kind of assumed it was all linked to the drain sites still having some nastiness in there. Ergh! I must admit, I was shit scared through all this because I'd almost convinced myself I was going to end up back in hospital and end up having another operation. I never said anything to the family about this, though I think they probably were thinking the same and praying we didn't have to go back down that road again.
11 October, Facebook status was "Blood test results in today and the registrar was v happy- White cell count normal and so was everything else- good start to the week!"
and 16th November's status was "enjoyed swearing loudly at the consultant today" possibly first signs of PTSD?
During these first few months home from hospital, my sleeping pattern was totally screwed. I assume it's because of the routine of hospital life; being woken up for medication, obs, other patients, lights etc. I couldn't get back into it at all PLUS I was getting the most horrendous night sweats. And I don't just mean a bit sweaty- this was total saturation and change my PJs up to 4 times in the night! I was sleeping on towels it was that bad. No wonder I was so bloody grumpy! I was even sleeping part of the night downstairs so as not to disturb Helen too much plus, at the time, sleeping upright kind of helped. I was keeping an eye on my temperature throughout this and that was fine. I kind of assumed it was all linked to the drain sites still having some nastiness in there. Ergh! I must admit, I was shit scared through all this because I'd almost convinced myself I was going to end up back in hospital and end up having another operation. I never said anything to the family about this, though I think they probably were thinking the same and praying we didn't have to go back down that road again.
By December my drains were out, just holes (!!) and on 1 January 2011 I was able to have my first bath...finally I was water-tight after how many months?!
Problem-wise now, what's left? Well, my outer left leg is still numb- don't know what to do about that. It's not stopping me do anything, it's just numb (and it's annoying)- I might try some acupuncture. And my abdomen still hurts. I sort of describe it as a tennis ball bouncing about inside me. Occasionally it hurts alot. Occasionally it's ok - apparently it'll always be like that because of all the scar tissue inside (nice!)- not impressed that it'll always be there but what ya gonna do!
Carry on and not let the bas**rds grind you down!!!
