As usual my absence can be explained by the continuing medical dramas in my life and me generally feeling crap. My medical adventures over the last few months have involved scans, ultrasounds, x-rays, cystoscopies, urodynamics testing, being hooked up to the mains for neurological tests…as usual with my body that hates me, just when I think nothing else can go wrong with it, something else does.

On the positive side, finally, earlier this year (I think it was around April time) we finally got the go-ahead from the PCT for getting the testing strips for my INR prescribed on the NHS, so finally I was able to start with the self-testing. This has made a huge difference, cutting down the amount of appointments I need and the time I’ve been needing off work for medical appointments, and of course associated sitting around in waiting rooms. Recently I went away for 10 days, and as my INR’s been going haywire recently after I was given some antibiotics before a medical procedure I’ve been needing to test my INR most weeks, I was able to test my INR while I was away without the hassle of having to register with a local doctor and going for blood tests etc. It takes only a few minutes to set up and test my INR, and then I just phone my GP to get my warfarin dosage. I’m getting pretty good though at guessing what the dosage is going to be and how long before re-testing, and mostly I guess right what my GP’s going to say. I did have a bit of a panic before my trip away when I ran out of testing strips and it turned out the prescription I’d got was for the strips for the old version of my testing machine, which aren’t compatible with my machine. When I couldn’t get the right strips from any of the local chemists before I went, fortunately the practice manager at the surgery saved the day, letting me borrow some of the surgery’s test strips until mine arrived.

In the midst of all the medical dramas Bliss had a couple of months of practising getting back into writing mode (not that we’ve made much progress on that front), I had a long and frustrating battle with beauocrasy, and I’ve had the usual battle with managing to keep my hours up at work. Other than that things are pretty much the same except that I’ve started to put my “getting things back on track” plan into action, and I’ve given up the support forum. This means I’ve actually got time now to do things that don’t involve being glued to the keyboard all day every day, and I’ve actually started watching TV again – yay!

Normal service shall now resume.

I’ve just been doing some reading though on a study comparing the results of the old Coaguchek S, the Coaguchek XS, the i-STAT, and plasma INR results compared with capillary whole blood INR results, and it looks like there were only only 8 of 48 warfarin dosages that would have changed based on the CoaguChek XS whole blood INR result compared with the plasma INR result, and that there weren’t statistically huge differences between the kind of results from capillary sampling and plasma INR.

I guess providing you stick to one or the other, any dosing adjustments made on the basis of the results should result in a pretty consistent level of INR. I suppose though if you’re mixing and matching between the two, that’s when you could potentially end up with INR all over the place, because if you’re using a result from one that might result in a change in dosage, and then you switch to using the other, which may be one or two tenths different due to the different sampling methods, you could end up with a dosage too low or too high, and INR all over the place.

With the results I’ve got this week, based on a quick look through my anticoagulation records, the differences I’ve had from the machine probably wouldn’t have resulted in my GP prescribing the dosage that much differently. Well, I’ve found another article for him which I’ve added to the pile of reading matter for him. <grin> He doesn’t need a library with me around! I think once I’m feeling up to getting down to the surgery, I probably need to go and have a chat with him and see where we are with arguing with the PCT about prescribing the test strips, and the best way to deal with this.

Well, the district nurse has just been, and removed the staples – yay! She said to give it a day or so before washing my hair though, so in the meantime I’ll just have to be content with picking bits of dried blood and stuff out of my hair and trying to get some of the clumped bits freed up. Yeah, ewwww! She’s only taken one of the stitches out from the abdominal wound though, because that doesn’t seem to be healing so well (I had this problem last time with them). Due to where they are it’s difficult to steri-strip it if she tries to take them out and finds it’s not healed well enough for the stitches to come out really (and fortunately it was just one of the end ones she’d taken out), so she thinks it’s best to leave them in for now and get my usual district nurse to come and have a look at them on Monday.

The nurse practitioner’s just phoned to let me know that she’s spoken to my GP about my INR, and he’s said to drop the dosage down to 9mg again, and have my INR re-checked on Monday, which as the district nurse will be coming again on Monday anyway, isn’t a problem.

Anyhow, yesterday was a headache free day! Woooo-eeee! First time in a long time that’s happened. Today I started off with a bit of a headache (the usual first-thing in a morning type thing), but now apart from having a sore head from having the staples out, headache’s now gone. No change on the balance/dizziness front, but I guess it’s still early days yet. Still doing pretty good though. This time last week I was having a little snooze while someone drilled holes in my head! On the whole I think I prefer this to that.

I’m still not sure I got an accurate result though, as I think from the rate at which blood was dripping from my finger, rather than just a nice blob forming, that rather than hitting a capillary I accidentally hit a vein. I managed to get the first big drip onto the test strip though, and it was well within the 15 second limit from lancing to getting it on the test strip. I’m not sure if it was a vein I hit rather than a capillary whether it’d make any difference to the result, but according to the result I got my INR’s now bang on 2.0. I suppose the test will be if the lab result comes back the same. A jump of 0.8 in 2 days is a lot even for me though.

I know in the past it’s always taken a hell of a large dosage to get me back within the therapeutic range initially, but I also know my INR has a tendency to be very unpredictable – sometimes it only takes a tiny change in my warfarin dosage to send my INR either way up or way down, and in the past I’ve even had to have 0.5mg tablets with the standard 1mg, 3mg and 5mg ones to keep it even. I guess part of the problem is that 50% of my Factor V is normal, and 50% of it’s abnormal, lacking the protein that stops the clotting process. I suppose theoretically that the sample could have just happened to have either a lot of the normal, or a lot of the abnormal Factor V in it (I’ve no idea whether it works like that though), but nothing really’s changed to affect my INR that much.

I have reduced my painkillers, but they shouldn’t have any effect on my INR – they’re not drugs which are particularly known to affect INR. The one that does affect my INR a lot is the gabapentin (though I’m on a steady dosage of that), and the anticoagulation clinic always used to say that they always had trouble controlling the INR of people on gabapentin. For some reason it just seems to make INR very unpredictable when you’re on gabapentin. I’ve been very good and resisted the temptation to have a vodka and tonic though (both of which thin blood) to try and get my INR up, and I’ve not been eating any differently, but I have just started a new pack of both 3mg and 5mg warfarin tablets. There was an article in Anticoagulation Europe’s (the UK charity for anticoagulation and platelet therapy) newsletter a couple of months ago about different brands of warfarin, and although theoretically there’s supposed to be a standard amount of the active ingredient in each tablet, they have found that there are variations between the different brands, and that some people can be very sensitive to even small variations in the amounts in the tablets if they’ve been getting one particular brand and then suddenly the pharmacy dispenses a different brand. Anyway, we’ll have to wait and see what the lab result comes out at.

On the positive side, I’m now more or less back on my standard painkillers (which are for my back and other problems, and not particularly IIH), and last night, and this morning….no headache! Wooooo-eeeee!!!

My balance is still off, but I haven’t been feeling quite so dizzy this morning, which is a good sign. Considering I’m still less than a week post-op, I’m feeling pretty good. I’m not really doing much except a bit of pottering around the house and watching daytime TV, and the real test comes when I start doing more, but this is probably the best I’ve felt so soon after a shunt op, so fingers crossed my 2.5 shunts between them are doing their job and will continue to do so!

I rang the surgery for my INR result and it’s still only 1.2, though that’s because the ward doc put me on 9mg of warfarin for two days when I came home rather than the usual two days of 10mg they start you off on. I think that was probably because they’d asked what my normal warfarin dosage is though, and it’s been 9mg for the last couple of months. With me though, from experience I know that it usually takes more than 10mg for a couple of days to get anywhere near the therapeutic range if I’ve been off warfarin for any reason. I did test it myself just after the district nurse had gone, but I knew the result wasn’t accurate as it took ages to get a decent sized blood sample, and although I did get a result, I was way outside the 15 seconds limit for lancing the finger to getting the sample on the test strip, so on this occasion I wasn’t expecting the result to be the same as the lab result (you only have 15 seconds from lancing the finger to getting the sample on the test strip because otherwise the coagulation process will have already started and the result won’t be accurate).

Still feeling rather sore, and my head’s itching like crazy, which although annoying is good, because it means it’s healing okay. I’m still getting the weird and wonderful random abdominal pains, which from what I remember from my first shunt take a fair while to settle down. The body doesn’t like having bits of plastic floating around inside it, and both the tubing of the distal catheter, and the draining cerebrospinal fluid irritate internal bits and pieces, and it’s common to get a variety of random shifting abdominal pains, especially in the early days with a new shunt. Fortunately my surgeon had warned me about them before I had the original VP shunt, and back then I certainly did get some severe pains from the distal catheter. The night I got out of hospital I was doubled up with pain under the ribs which felt just like gall bladder pain. Had I not been pre-warned about it, I’d probably have ended up dashing off to A&E, but fortunately it eventually eased. This time so far I’ve not had anything so severe, though as it’s just the lower portion of the distal catheter that’s been replaced, the tubing in that area’s not been touched. Usually the pain will ease with a little gentle rubbing, though once again I’m finding that eating a fair amount too quickly isn’t wise, as it seems to dislodge the catheter, requiring more gentle rubbing and encouraging it to move slightly to make it more comfortable.

My balance is completely off as well (even more so than usual) and I’m getting some extremely dizzy spells, but that’s pretty standard too. As an ENT specialist I saw last year explained, the CSF system and the cochlear fluid are closely linked, and a large change in CSF pressure such as after a shunt or an LP can totally confuse the body’s balance systems. From previous ops though what I’m getting now is about standard for this length of time post-op.

I spent most of Sunday after I got home dozing on and off, and a fair amount of yesterday either dozing or watching daytime TV, so I’m not particularly doing very much. I guess because it’s the third VP shunt/revision I’ve had I knew what to expect afterwards. Apart from being generally sore I’ve got a bit of a headache, but it’s only on one side, so I think it’s the after effects of the op rather than high or low pressure. I’m still on the high dose of my normal painkillers, but I’ll probably cut that down a bit over the next few days and see what happens. Usually the only thing I miss about hospital when I get home is the beds (they have those fantastic electronic ones that you can adjust to any position), but I slept surprisingly well last night once I was dosed up with painkillers and managed to pile cushions and pillows all over the bed to get reasonably comfortable.

The district nurse has been this morning to take some blood for my INR check, and the plan was that I’d test it myself using my machine at round about the same time to check whether we’re getting the same result from the machine as from the lab tests, but that didn’t quite work out, as though I managed to get a decent blood sample eventually and get it onto the test-strip and get a result, it was way past the 15 second limit for lancing the finger and getting the sample on the test strip, so the result wouldn’t be valid, as the coagulation process would be already under way. It’ll be interesting tomorrow though when the result comes back what the lab result shows.

Residents of my forum are amazed that I’m not still totally out of it, floating around in a haze of painkillers, but I’ve always come round from anaesthetics pretty quick and got over the initial post-op period pretty quickly. The first time I had a general anaesthetic when I was in my teens I was sitting up in the recovery room and asking the staff if it was always that quiet (I’d been the first on the list, and there was only me and a couple of others in the recovery room at that stage) and they were trying to get me to lie down and relax When I had my LP shunt revision a couple of years ago, I was fairly late in the afternoon going down to theatre, but when the anaesthetist came round to check on me when they’d finished the afternoon list, she got to the ward to find me sitting up in bed eating my tea, and said she thought I was probably okay! This time when Mr M came round to see me early evening I was sitting up a chatting with my mum and dad, and I’d already persuaded the staff to let me out of bed to use the commode (me and bedpans don’t get on, and they know me well enough from my previous stays to know that it’s a lot easier for us all to use the commode option rather than bedpans) and swap the oxygen mask for nasal cannula.

I was thinking about it earlier though, and this is my fifth op in four years, but to say it’s still only three days since the op, this is probably the earliest I’ve felt this well (probably not a good idea to say that though – I’ll probably feel crap tomorrow now!). Part of it I suppose is because I’m on pretty heavy-duty painkillers anyway, so my body’s used to functioning with quite high levels of drugs. I’m always better when I’m actually doing something that takes my mind off whatever bit of me’s currently hurting – not that I’m really doing anything at the moment. I was up around 8am this morning – though that was mainly because I needed some more painkillers – but then just got myself comfy on my reclining chair and watched the breakfast news and daytime TV and then had a shower and got dressed around 11am. Since then I’ve just been watching TV and every so often reading a few more emails and checking out a few messages on the various online fora I frequent – nothing too taxing.

Apart from the “live for the day” philosophy I’ve adopted, the other big part of my way of coping with it all is planning. I work in strategy where we make plans for the future, and to a certain extent I do that in my life as well. Sometimes it’s little things and sometimes it’s big things, but I have a kind of plan in my head (or more often these days on the computer as otherwise I forget what the plan is!) of what I want to get done and when I want to get it done by. Often it might be little things, and if things don’t go according to plan and I don’t get them done, it’s not the end of the world, and a total disaster if I don’t meet my “targets”, but it gives me something to aim for.

While I was in hospital I’d got a plan in my head of how it was going to go though, and fortunately everything went according to plan and there were no complications, and the staff were okay with my plan. I knew I was third on the morning list on Friday, so I’d probably be going down to theatre late morning/lunch time, and having had a VP shunt revision before I knew roughly how long it should take, and figured I should, if the theatre recovery room staff were happy with my progress, be back on the ward for around 4pm. I’d guessed right, and it was bang on 4pm when they wheeled me back up to the ward. That meant I’d be sorted out and ready for tea and visiting time at 6pm. As I said, I’ve always come round from anaesthetics pretty quickly, and fortunately they don’t tend to make me feel sick or anything.

Once I was back on the ward I established that the anaesthetist had said to keep me on oxygen for 6 hours, which was fine with me as I’d been off it by 10pm in time for bed, and fortunately I’d only been written up for one IV of fluid (which was a relief as I know from experience it’s when they leave me on an IV all night that we start having problems with bedpans etc.). I knew that they’d be waking me every hour during the night to do the neuro obs, and I knew as long as everything was okay I’d be allowed out of bed on Saturday. That meant as soon as I was allowed up I could get down to the bathroom and have a wash and get dressed (very important part of the plan, as if you’re up and dressed and not looking like a poorly person, you’ve more chance of being allowed out sooner), and then after breakfast and a couple of wanders down the ward to test my legs and make sure I wasn’t going to go too dizzy when I started walking, I could head off downstairs to the shop to get a newspaper…and more importantly nip outside to join the other escapees on the bench outside the main doors for a ciggie and to phone my mum and friend Pinkie.

Mr M had said when he came to see me on Friday evening that they’d want to monitor me for 24 hours, but then if I felt okay I could go home, but that there was no rush, and if I didn’t feel up to it I could stay as long as I needed to. According to the ‘plan’ in my head I was thinking probably Sunday or Monday for going home, but of course the big question was whether haematology would get theit hands on me. Fortunately, of course, they didn’t, and even though I doubt I’m anywhere near my therapeutic range for my INR yet, the ward doc said I was okay to go but to have my INR checked tomorrow. After my LP shunt revision a couple of years ago I really did feel rough after the op and had really bad low pressure, and I was in for 5 days after the op that time – the longest I’ve ever been in after a shunt op, but this time, things seem to be going okay, and the ward doc on Sunday said I was fine to go home on Sunday.

Friday and Saturday they had me on a double dose of Clexane (Enoxaparin) (one of the injected anticoagulants) as they didn’t want to re-start the warfarin too quickly and thin my blood too quickly because of the risk of post-operative bleeding. How all the different clotting factors in the blood works is very complicated, but although Clexane is an anticoagulant, a type of heparin (low molecular weight heparin), how it works is different to how warfarin works. Since Sunday when I re-started the warfarin I’ve been on a high dose which they usually give when starting or re-starting warfarin, and then depending on what my INR is tomorrow I may have to adjust the dosage, depending on what’s happening with my INR. It was 1.2 on Saturday morning when I checked it with my machine, but I’ve not checked it since then, hence wanting to check it around the same time as the district nurse comes to take some blood, to see if we get the same result from the lab test. From what I’ve read though, results can even vary slightly between different labs using different reagents, so if it’s not exactly the same as the lab result it’s not a major problem. The ward staff were certainly very impressed with my little machine.

Phoned this morning at 8.30 to check they’d got a bed for me, as per the usual instructions, and was told that as the docs hadn’t done their ward round they didn’t know and to ring back later. I explained about the warfarin and that they’d said they wanted me in early as they’d need to check my INR and stuff (tested it myself this morning though, and it was 1.3, so that should be fine), and the lady was really nice but said they couldn’t say yet, but someone would ring me back as soon as possible. When the nurse from the pre-op assessment clinic phoned on Monday to confirm it would be today I’d be going in and they weren’t planning on putting me on a heparin infusion, she said to remind them that I’m on warfarin, and usually even if they’re short of beds, if they know you’re on warfarin (or rather off it for an op) they find you a bed somewhere. That’s the danger with neurosurgery wards where they’re admitting emergency cases all the time. It only takes a pile-up on the motorway (which is quite close to the hospital, and the hospital’s the regional neurosurgery specialist centre) or something like that to make a serious dent in their beds situation and throw admissions for non-emergency/elective surgery into chaos, and as with neurosurgery you can never tell how a patient’s going to recover after surgery and need medical care, therefore potentially be kept in longer than they’d anticipated, that just compounds the problem. Being a hospital bed manager certainly isn’t a job I’d like to have to do, trying to keep all sides of the equation happy – docs, surgeons, ward staff, and patients – and things running smoothly!

As we’ve not heard anything and it’s now well past 11am I’ve just rung again (my dad was getting concerned about finding parking if we go this afternoon when it’s visiting time), and spoke to the ward clerk, and she said that they’re still trying to arrange something and that she’ll have a word with the bed manager and get someone to ring me asap (I explained about the warfarin again). It sounds like they’re pretty full and they’re desperately trying to find me a bed. As I’ve been off the warfarin now since Monday and my INR’s so low now, I’m at risk of developing clots, so they need to sort me out so I can get back on the warfarin afterwards. I guess there’s not much they can do though if they’ve got no beds, and it sounds like they’re doing their best to get me in. I suppose if I was just a “normal” patient they’d just say they have no beds, but with me being on (or rather currently off) anticoagulants, it complicates things rather and they’ll do what they can to get me in because of the risk of leaving me un-anticoagulated for too long.

Back to the waiting game then. *sigh* If I don’t reappear later you’ll know I’ve gone and they’ve managed to find me a bed…otherwise it looks like you, and Bliss, will have to put up with me a bit longer.

Edit: Just had a call from the hospital, and they’ve found me a bed so I’m off now! See you next week all being well!

I’ve just finished packing (there’s nothing like getting organised in plenty of time …I’m the same when I have to pack to go on holiday) so I’m just about set. I’ve got all the essentials…MP3 player, both mobile phones, Jack, my Eee PC charged up and ready to go, flash drive with all my essential files on…oh, and some pyjamas and a toothbrush and stuff as well

Bliss won’t be accompanying me to the hospital. She doesn’t like ‘em and says I’ll have to make do with the grapes she’s packed for me, so I’m leaving her in charge here. Don’t expect to get any sense out of her though – she’s still sulking because we’re still not doing any writing.

See you some time next week all being well!

I’ve been for the pre-op assessment today though, as usual a very long-winded and tiring affair. Apart from the usual blood pressure, pulse, blood tests and stuff, along with an ECG this time as well which I apparently needed having had a PE, most of the time seemed to be taken up hitting me with hammers and prodding me with sharp pointy objects and checking out and documenting the left sided weakness and pins and needles/numbness I’ve got. After they’ve been messing around inside your head and start doing neurological observations after the op, if they suddenly think you’ve developed a weakness that wasn’t there before, the staff start to panic a bit, so I guess they need to check out thoroughly what symptoms I’ve already got. It only occurred to me though after I got home today that no-one actually asked me if I’d got any questions about the actual operation (which I don’t think I have), but all the same it would have been nice to be asked. I guess what with everything else, and the fact I’ve had a similar op before they just assumed I knew what it entailed etc.

Now they’re saying though that they’ll have to speak to the anaesthetist who may want to bring in haematology, in which case I might very well end up on a damned heparin infusion again and have to go in before Thursday.

This does not please me at all, because quite apart from blood tests every 6 hours day and night, it means I’m more or less confined to bed, as unless they do what they eventually did last time and clamp the infusion machine to the handle on my wheeled walker, I have to be escorted even to the loo (despite the fact that I’m quite capable of managing the walker and IV stand, as I demonstrated last time). It also means I’m not allowed off the ward without an escort, and quite apart from getting outside every so often for a quick smoke (very quick, especially if it’s blowing a gale like it was last December when I was in!), simply getting off the ward every so often to do something vaguely normal like go and have a coffee, or go to the newsagent’s shop in the entrance, or just see normal people doing everyday things is essential for my sanity.

As usual, what’s happening about my warfarin is the subject of much debate and confusion. The first time I was supposed to be going in a couple of weeks ago I was supposed to stop the warfarin, but check with my GP about what he thought. Today’s instruction from the doc at the pre-assessment clinic was stay on the warfarin but keep the INR below 2.5, and despite the fact my INR was 2.6 yesterday, my GP’s saying keep on the current dosage (10mg Friday and Saturday, and 9mg for the rest of the week) which is liable either to push it up more or keep it the same. Meanwhile I have to wait to hear if there’s any news on whether haematology want to get involved… *sigh*

My plan ‘B’ is to test it again myself on Monday and then ring the ward and speak to someone there for advice, because if it’s too high they won’t do the op on Friday, which’ll mean keeping me in even longer (and increasing the chances that haematology will get their claws in and stick me on heparin), and while I am a frequent visitor to that place, it doesn’t mean I have to like staying there. Of course the danger with contacting the ward is that it might remind them they’re thinking of dragging me in earlier, but I’m hoping that the combination of the fact I can test my own INR and the ever present shortage of beds might keep me from their clutches. I’m not a very patient patient, and when tethered to an IV 24/7 and woken up in the middle of the night repeatedly I tend to get very grumpy.

I’m hoping that Jack, my Eee PC, will be going with me (if I can get their electricians to PAT test him, I should be okay to use him), and in preparation a couple of months back bought one of those security cables for using with the Kensington lock slot on laptops, for tethering him to a solid object, but even taking Jack and having the ability to get online, and the pile of reading matter I’m planning on taking with me aren’t going to distract me for too long if they decide to tether me to an IV.

Hospitals are wonderful places and they do some amazing stuff, but where they fall down is actually treating people who are in full possession of their faculties and not desperately ill, as real people with more than medical needs. Last time I was in hospital I was in a bay with a lady who was a regular visitor to the ward and though obviously needed some medical care, was otherwise healthy and compos-mentis and capable of rational thought. She was also very independent and had an agreement with her consultant that the only way she was staying in was if she was allowed to wander. She’d always be around for the meal and drug round times and when the docs were doing their ward rounds, but in between she’d go off for a walk around the hospital or the grounds, or on a couple of occasions to a coffee shop down the road. She’d always tell the staff she was going and roughly how long she’d be, but getting off the ward and just being with “normal” people was good for her psychologically, and allowed her rights as a person, and not just a hospital number with a set of medical notes, to be respected.

Meanwhile I was more or less confined to the ward. Admittedly when you’re hooked up to a machine with a battery that only lasts 45-60 minutes tops when it’s unplugged, you’re somewhat limited to where you can go and how long you can be away (especially in a hospital where it can take 10 minutes either way to negotiate the lifts due to there being 19 floors and only 4 public lifts) when you’re going to need recharging sooner or later, but quite what I was going to do at the settings on the infusion if I was let out without an escort I don’t know!

Keep everything crossed I don’t end up on a heparin infusion, because if that happens, I shall be very grumpy indeed, and believe me, when I get in a strop, it’s not a pretty sight! For now though I need to tidy up so I can get to the wardrobe where my travel bag is, and it’ll take me a good couple of days to make sure I’ve got all my required gadgets I need to take to amuse me and allow me to contact people (that’s another reason I need to be able to escape the confines of the ward, to use my mobile), and make sure I’ve got all the required cables and chargers etc., and this vital step cannot be rushed!

The new lancets supplied by the nurse practitioner did the trick (get a much larger blood sample), and today I managed to get the stabbing finger with sharp pointy object and working the machine working together, and actually got a result!

After the first beep of the machine I’d got my eyes closed, because I was convinced that it was going to come up with one of those error codes again, but no, I actually managed to get a result! Only one attempt at stabbing finger, and machine worked perfectly, and my INR was 2.6.

Under normal circumstances that’d be just about perfect, but it’s a little on the high side considering I’m supposed to be having my op next Friday, and it’ll need to come down before then. I’d imagine they’ll check it again when I go for the pre-op assessment at the hospital tomorrow though, and I’ll find out what the plan is for sorting it out before the op. I’m hoping it’s not going to involve getting put on a heparin infusion, but as haematology are likely to get involved, I suspect it will. *sigh*

His secretary was ringing to say that I was now officially on the waiting list for the operation (up until now I hadn’t been due to the bureaucracy involved in getting me onto the list), followed about 10 seconds after that by, “…and I’ve been looking and we have a slot available for Monday.” Now I know people complain about the NHS and waiting lists, but I have to say that 10 seconds from being told you’re on the list to getting a date is pretty damned good! In fact I’d imagine it’s probably a world record. All this depended though on being able to get me a pre-op assessment appointment this week. The surgeon’s secretary said she’d see what she could arrange, and call me back as soon as she had any news, but warned me it might be Thursday morning.

On Thursday morning she called me back with the good news that though she’d not been able to get me a pre-op assessment clinic appointment, the ward said I could go in earlier on Sunday and they’d do all the pre-op assessment then. I spoke to the ward Sister, because of course being on warfarin complicates everything, and she advised that I’d need to stop my warfarin, but that it was probably best to check with my GP, as due to the Factor V Leiden, he may not be happy about stopping the warfarin completely, and I might need heparin instead.

There followed much scurrying around and trying to rearrange appointments and contact work and so on. Having only three days to get myself organised and make all the necessary arrangements and having to tidy up so I could get to the wardrobe to actually get one of my travel bags out was a logistical nightmare. Last year just before Christmas when I ended up in hospital at short notice for a lumbar puncture when I spent a week tied to a heparin infusion and having 6 hourly blood tests, all for an LP which is normally (that is unless you’re on warfarin) done as a day case, at least I got a week’s notice, and that was bad enough.

I was in eleven days altogether for an LP which took about 20 minutes. The LP itself was done on my birthday – a rather unusual and unique present I have to say! A large part of that time I was hooked up to an IV heparin infusion, having blood taken every 6 hours so the heparin could be carefully adjusted. After the LP I was in for another 6 days while my INR got back to my therapeutic range, because haematology weren’t happy letting me home until I was back within my target INR range, though in the end they did teach me to do the Clexane anticoagulant injections myself so they could get me home earlier, and before my INR was back up at 2, otherwise I might well still have been there over Christmas. That’s another important reason for getting onto the INR self-testing, because it can potentially reduce the amount of time I spend in hospital every time I go in, waiting for my INR to get to where it should be. With self-testing I can test my own INR and ring my results through to the hospital who’ll advise me of any change in dosage needed. This is what I don’t get about the PCT’s reluctance to fund the testing strips. Okay, so they’re expensive (it costs me £61.15 for 24, but I’d imagine with their bulk buying power the NHS gets them cheaper), but I’ll bet it’s cheaper than the lab costs for testing INR, especially if you factor in all the staff time involved as well in taking the blood, testing it, and then interpreting the result, and a damned sight cheaper that a day or several in hospital.

I shouldn’t have worried though about only 3 days notice, because after the world record waiting list wait there followed probably the swiftest cancellation on record as well, and barely 24 hours after getting a date, I got another call from my neurosurgeon’s secretary to say that the ward staff had discussed it more, and had decided that bringing me in at the last minute wasn’t wise, as with my complicated medical history they felt I needed a full pre-op assessment, and that the warfarin issue would need very careful management, and I’d probably need switching to heparin because of the danger of me developing clots if I stop the warfarin.

I guess with any kind of surgery they have to be very careful when you’re on anticoagulants, but particularly when they’re messing around inside your head. Anywhere else and if you start bleeding they can just apply pressure to stop it, but when they’re messing around inside your head, that’s somewhere you definitely don’t want bleeding, so I guess they have to be ultra careful that everything’s at the right level and they don’t get any nasty surprises bringing you in at the last minute. At least I get chance to tidy up now and get myself organised properly. Normally anyhow it takes at least two days to figure out which of my geeky gadgets need to go with me and that I have all the appropriate cables and chargers handy and everything charged up (this of course takes priority over ensuring boring things like clothes and such like are packed).

Hopefully, as my surgeon’s recently had the amount of theatre time he’s allocated increased it shouldn’t be too long before they can get me a proper pre-op assessment clinic appointment sorted out and a date arranged. And hopefully I won’t end up spending another birthday in hospital.