Thursday, 27 September 2012

Caught in a (Mouse) Trap

Last week I just about brought you up to date – I didn’t give you the results of the MRI, because I haven’t had them yet. I can only imagine that if they were serious in any way, I would’ve been called into the hospital; I always have been before.  In the meantime, my next appointment isn’t ‘til December.  As I’ve said in previous posts, admin’s not the NHS’s strongest point.  If I do have any problems, though, I know I can just email or call my IBD nurse and I’ll be seen within a few days – no admin, you see; just a nurse with a proper understanding of Crohn’s Disease and an extraordinary commitment to what she does, and the patients she helps.  She’s like some kind of superwoman, and I can depend on her totally. At least I can for as long as the NHS realises how important she is and continues to employ her, but I shall resist repeating that rant this week.  The point is, we don’t need to worry about the MRI for now.

What I thought I’d do is take you into the past.  Make like Dr Who, only with a very linear selection of destinations and no tardis.  To give you an idea of just how hard I fought not to have the bag that I now cherish and with which I couldn’t be happier.  What treatments I tried in order to avoid having to undergo surgery.  Like many sufferers of  inflammatory/immunosuppressive chronic diseases, the default drug for me, for several years, was prednisolone – the king of all steroids.  Evil little bastard of a drug, but so effective in its way.  When it works, it works fast and efficiently, but boy does it give payback.  At the beginning it’s kind of amusing – when I first took it, I ate continuously for 8 hours one night, much to the delight of my then flatmates.  A decade or so later, I was on it for 7 years’ straight, then off and on for months at a time. I was lucky not to lose bone density, but I have had most of my teeth crumble and fall out, my hair is thin on my head, and thick everywhere else, which is not what any woman wants, and I have extra weight hanging around my body, thus negating the one benefit of Crohn’s I used to enjoy – a slim silhouette.  These days I’m more Reubens than Modigliani, though I don’t imagine either of them would be in any hurry to paint me.  And not just because they’re dead.

Once steroids and the various other anti-inflammatory options had been exhausted, new ones started to show up.  I tried something called thioguanine in a trial of 400 people with IBD.  One day I had a blood test result that filled my Consultant’s room with research doctors all looking stressed; it seemed I’d screwed up the whole thing by being the one patient whose liver function tests had come back abnormal.  It turned out to be cysts on my liver, which disappeared quickly enough when I stopped taking the drug.  And then, one day when I was beginning to despair of ever feeling well again, I was told about Infliximab (Remicade in the US). 

It was in the early 2000s, or at the turn of the Century as I like to call it, blocking out my generation’s vision of that as a time of empire, Boer war and the end of Queen Victoria’s reign (that’s the turn of the previous century), and replacing it with images of the internet, tiny mobile phones and disappointment that we still didn’t have jet packs.  And then there was Infliximab,  Which, rather hilariously, was partly made from mouse genes.  Yes, you read that right. I was to become part mouse.  A very tiny part, that probably wore off quite quickly, but you know – mouse genes.  Weird.

I was to get Infliximab by infusion – which is not in a nice cup of boiled water like a herbal tea, but through an iv in my arm over a period of 2-3 hours. It had only recently been approved in the UK as a Crohn’s treatment, so everyone was very excited, and I’m pretty sure I was one of the first of my Consultant’s patients to try it.  Lots of IBD patients use it now – these days it’s often given in combination with other powerful, toxic drugs that pretty much mean Crohn’s patients are having chemotherapy for their disease.  It seems to work.  Back then, my Consultant was very careful – he warned me that my immune system would be almost completely knocked out and that for a few days after each treatment I should pretty much hibernate.  My son was about 9 at the time and therefore, together with his friends, a veritable germ factory, probably carrying all manner of bacteria gathered each day at school.  We kept an antiseptic hand gel on the hall table that everybody had to use when they entered the house, and for those few days after each treatment, no other kids were allowed to visit.  If husband or son so much as sneezed they couldn’t come near me.  We took that warning very seriously.  Nowadays, I understand, such measures aren’t taken or even recommended, but this was a brave new world of putting mouse particles into human bodies and caution was the name of the game.

My first treatment was boring.  I lay on a bed in a day room, talking to the nurses when they had the time, listening to the psoriasis patients who were more experienced Infliximab users as they shared gruesome details with each other, grimly aware I was the only one there who had Inflammatory Bowel Disease.  The second time I took son’s iPod.

I had the treatment once every two months, and it would wipe me out every time; I’d spend the next 6 days unable to do anything, then suddenly I’d feel well.  Strong.  I’d get up and go out and about.  I took son to the Natural History Museum for the first time thanks to Infliximab.  It was such a huge deal that my Consultant wrote it in my notes.  It was a bit odd that son had to show me around (I hadn’t been there since my own childhood) but I can’t tell you what a joy it was as well – seeing the excitement on his face as he led me through a room full of pickled animal foetuses before skipping ahead, calling back directions to the rather impressive sight that was the (huge) blue whale.  I was very happy with this Infliximab treatment, if a little disappointed that I didn’t find myself constantly craving cheese.

During my 9th treatment, I started to become breathless after about an hour.  By this time, I was having the infusions on a small day ward with me usually being the only one there.  I would get the sporadic attention of two nurses – one, the ward sister, was always there, together with one of a small pool of sweet, newly qualified nurses who were usually happy to chat, but not always terribly good at getting the iv in.  When I had the breathing reaction, the ward sister was super-efficient, turning off the iv, calling the Consultant, waiting for instructions about what to do next.  In the end, it was decided to give me some piriton and continue the infusion, only more slowly.  

On the 10th treatment, I got breathless again; this time much sooner.  I felt a bit odd with it too - light-headed, heavy chested.  The ward sister administered the anti-histamine again and stayed with me as it flooded my veins, making small talk about nothing very much.  This woman was an excellent nurse, but a tough nut to crack when it came to conversation.

And then came treatment number 11.  This time I was having the piriton from the beginning, alongside the Infliximab.  And something else had changed; the ward sister pulled up a seat next to me and started her usual meaningless chatter, but then she moved on to other subjects. More personal subjects.  I was about 12 minutes in to the infusion when she started to tell me – haltingly – about her difficult relationship with her mother.  I love it when people do that; open up and tell me stuff, and I was aware of how unusual it was for this particular person to be doing it.  Which is why, when at 15 minutes in I started to feel a whole new kind of reaction, I didn’t just come out and say so.  I felt it would be rude to interrupt her.  Sometimes, for  a mouthy Jewish chick, I can be too damned English for my own good.  It wasn’t until I felt as if a huge weight – a comic strip anvil was the only comparison I could think of – had just landed on my chest, that I broke into her conversation with a hoarsely whispered ‘something’s not right’ as I fought to keep breathing.  I have to say, her responses were lightning fast – she switched off the infusion, shouted something that resulted in two nurses being by my side in milliseconds, together with a crash cart; they were ripping my clothes open, sticking things on my chest, and actually charging paddles.  Really.  Like I was in an episode of ER with less attractive medical staff and no George Clooney.  It was hard to believe or understand that it was really happening, and at the same time all I could think was that I hadn’t hugged son hard enough or long enough that morning before he went to school.  How was he going to feel when he came home to find his mother was dead? He’d be so pissed off with me; I’d promised to take him to the zoo the following week.  And then suddenly I could breathe again.  The paddles were put back on the cart, having not been applied to my chest and everyone started to relax a bit.

The Consultant came to see me and I texted husband a not very reassuring message saying things had gone a bit wrong.  I then sent him another one telling him I was ok.  He’d gone into town, having dropped me off and knowing I’d be several hours, but made his way back to the hospital pretty quickly.  In the meantime, the ward sister filled in a yellow form, while the Consultant sat on my bed and told me I could no longer have Infliximab.  That he would do some research and try to find a way of getting me something else instead.  There was a new treatment in the US, he said, that hadn’t yet been approved for IBD in the UK, but he’d see what he could do. 

‘There is always the other option,’ he reminded me, as he did every couple of years.

‘Forget that,’ I told him, as I always did. ‘I’m not having a bag.’  I was a belligerent, wilful brat of a person back then.  And I would stay that way for another 10 years. Only then becoming the warm, fuzzy, chilled-out sweetie-pie you know me as now.

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