Where do I begin?
You might all remember I was admitted to my local hospital just days after we released the Responsible Reform (Spartacus) Report
I'd been unwell for months, hacking and spluttering my way through one chest infection after another, but by the end of last year it was obvious that, in fact, I was "Unwell".
"Unwell" is the point where I realise I'm not just unwell. You probably have to have had a chronic illness for a decade or two to know what I mean, but it's that moment of creeping realisation, that flutter of recognition flashing through your mind like scenes from a film : Compass conference, June = Unwell. Singing my welfare song, July = Unwell.Camping with the boys last August = Unwell. Oldest son's 7th birthday (October) = Horribly Unwell. Working on Spartacus Report = Unwell, Unwell and Very Much Worse.
I realised I'd been living on paracetamol for low grade fevers for most of the year. I realised that I'd had a cough that had never really gone away. I realised I was losing weight, always complaining of exhaustion. I wasn't walking far, struggled to get the kids to school or get around a supermarket. Even by my usual standards things were Not Right.
By the time I went into the local hospital, I could barely get out of bed, my face was swollen, I was coughing so much it was choking me and I'd lost more weight.
Because of the strong, chemo-style immune-suppressants I take, this not a good thing. As I recently explained Humira (or Adalimumab) increases the risk of severe infections and most commonly, TB. It is not just a "Oooh, be careful if you take this drug your head will fall off" standard warning - it's in bold type on the front screen of the website;
"Serious infections have happened in people taking HUMIRA. These serious infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacteria that have spread throughout the body. Some people have died from these infections. Your doctor should test you for TB before starting HUMIRA, and check you closely for signs and symptoms of TB during treatment with HUMIRA. If your doctor feels you are at risk, you may be treated with medicine for TB."
It goes on to say;
" In HIV and other immunosuppressed persons, any abnormality may indicate TB or the chest X-ray may even appear entirely normal."
I never really blogged about my stay in the local hospital (Worthing). It was so odd, so traumatic and surreal, I wasn't quite sure what to say. Dangerously, they made me doubt myself.
It all went fine in A&E. The doctor who admitted me immediately knew why a nasty fever and persistent cough in someone like me needed to be treated with caution. He admitted me to the Acute Medical Unit ( the clue is in the name!)
A House Officer came to see me that night. He'd just finished his gastro roatation and was newly on the respiratory team! Perfecto. He did all the right things. He explained how because of the Humira, they would need to test me for "things we wouldn't normally test a 38 year old for". He put up a broad spectrum IV anti-biotic and took blood cultures and ordered a sputum test. So far so excellent. I have no idea who he was but I'm confident he'll make an excellent Doctor.
The following morning, a female consultant marched into my room with the House Officer and the usual team of heavily cowed minions.
She barely spoke to me (never a good sign that, when they talk above you rather than to you.) and the first thing she did was shout at the House Officer "You'd better start realising this is NOT gastro". With that she started scrubbing lines through my prescription chart and tutting.
She listened to my chest and said that it was clear. She said my X-Ray was clear. She said I just had "a virus" and I could go home (?!?) I hawked up my best throat rattle for her, but she said I "probably had a touch of asthma". I started to say I'd never had asthma, no-one in my family had ever had asthma and that
my symptoms had been going on for 8 months, but she swooshed out of my room majestically in a puff of
disdain. I heard them discussing my X-Ray in the corridor "Well, the bronchia are a bit thickened but that doesn't mean anything"
I was shocked and upset - what had changed in 12 hours? I must have cried a bit, because the nurse asked me what was wrong and said she would call the doctor back.
Dr Arrogance never returned however, and an energetic, kind South African doctor appeared to be "assigned" to me. Nonetheless, Dr Arrogance had made her mind up. With none of my copious notes, (which reside at Addenbrookes in Cambridge where I have all my bowel treatment) no idea of the history to my symptoms, without even weighing me. We were done, thanks awfully.
I was 6 Stone 9 by this stage. Both of my children were at home with raging temperatures, but they wanted to discharge me! I was mystified. Every time I tried to get out of bed, a nurse had to catch me, but Dr Arrogance still insisted I was fine.
Dr South-Africa did his best. He ordered a load more blood tests, but kept telling me how great my bloods looked. I explained over and over that they always do (even when my bowel was one huge festering infection my bloods barely roused themselves to notice) but he became more and more frustrated, his hands tied.
In the end, at 9pm that night, as I very calmly tried to run through the reasons I didn't think I was fine, he exploded. He screamed at me - yep screamed - for twenty minutes, an incoherent attack. It was so bad and so loud a nurse came into my room and looked at me as if to say "WTF?" but he ranted on regardless.
Crying and scared, I stopped answering him in the end - it was just making him worse - and stared at the bedspread.
Finally, he stormed out, but I was so exhausted, so poorly, I barely knew my own name. Half an hour or so later, he came back. His attitude had totally changed. He'd printed out the drug leaflet for Humira and seemed to have realised I wasn't just being a silly little girly. I pointed out, very reasonably, that in the 17 years I'd lived in Worthing, I'd never once come to his hospital and said "I know something is wrong". With my 28 years of crohn's experience, did that not tell him something?
*Sigh* I could go on, but I might as well cut a long story short. Dr Arrogance had made her mind up, Dr South Africa turned out to be frustrated but his heart was in the right place. There was a split - he and my nurse clearly didn't think I should go home, but the decision wasn't their's to take. They washed their hands of me.
**This is a long story, so more tomorrow