I’ve never really been much into new year’s resolutions, but this year decided that I shall make a list of my aims and goals for the year. It goes something like this…

1. I aim to spend absolutely no time in hospital this year. None. Zero days. In 2007 I managed a grand total of 1 month in hospital, which is a bit excessive, even for me! 2008 I fared better and spent only 4 days as a resident of one of the NHS’s best establishments. For 2009 I’m aiming to get that down to 0 days, on the grounds that one of these years it’s got to happen! Routine clinic appointments and such like obviously don’t count, but we’re aiming for no time as an inpatient.
2. I shall be aiming to write something here every day.
3. (Bliss will like this one) Possibly doing some form of writing on one of my various creative projects every day is asking a bit much, and some days time commitments, prior engagements, and falling asleep at strange times due to the damned buprenorphine, make committing to creative writing every day a bit of a tall order. Instead I shall say that I will commit to doing some form of creative writing on a weekly basis. As I have a habit of starting off new projects before I’ve finished previous ones, I shall start no more until all my current projects are finished. So that I make some progress on all of them, I’m going to be trying to do some word on each every week. Every year for the past four years I’ve said “This is the year for Fallen Angel” (long term novel project first started when I was in college, rather a long time ago now), but this year, though I’m not committing to finishing it (a couple of shorter projects that require less research will probably get finished first), I shall make significant in-roads into getting it well on the way to getting there.
4. I will make time to read every day. I did make significant progress on this towards the end of 2008 after I drew up a list of “must read” books and went shopping at Amazon, and am pleased to report I actually managed to finish two books in the space of a month, which is a first since IIH struck. Reading’s still pretty hard going at times (it’s a lot easier to read on screen where you can resize text as necessary), but I’m determined to keep up with reading, as not only is it good for the soul, but it’s also a prerequisite for successful writing - read a lot, and write a lot.
5. I shall not ignore emails in my inbox and let them pile up so it takes hours to wade through them all and to reply to them where appropriate, file as necessary, or otherwise dispose of (as I ended up doing yesterday, trying to clear the backlog going back to October!
6. Finally, I’m going to be me. Not the me everyone thinks I ought to be, or thinks I am, but the me I know I am, and that means no more hiding behind stuff and actually getting back to being what I want to be. Again, I made significant in-roads in progress on that in 2008, and I shall continue that in 2009. If everyone else doesn’t like it - tough!

And finally…

Update on my shunt(s)

Well my attempt at chronicalling my recovery from the op kind of ground to a sudden halt. Once I’d initially got over the op I got dug into finishing off a long overdue website for my cousin’s BMX club which was a race against time to get it finished in time for the launch of the club’s brand new racing track. Got there in the end though, and barring a few minor tweaks and the usual maintenance stuff it’s pretty much okay and my cousin’s highly delighted with the end result. I aims to please!

The stitches in my abdominal wound after the op were slightly problematic, in that when the district nurse tried to take them out, she only got as far as one before deciding my stuffing was liable to come out if she took out any more, and left them in a bit longer. They were in for the full 14 days limit before the body decides they’re most definitely a foreign object and protests, but all was well, and it’s healed very well, infact you pretty much can’t see the scar now already unless you know where to look, and it’s only a couple of months since the op!

As usual after shunt revision surgery involving the distal catheter (the one that goes into the abdomen) I’ve had the usual variety of weird abdominal pains that move around and shift (very amusing game guessing where the next one’s going to pop up!) but they’re settling down, and I only get them occasionally now.  At one point a few weeks ago I was getting some very weird and painful pains in my chest/abdomen/shoulder and was worried that I might have another pulmonary embolism, especially as I’d been off warfarin for a week before the op and then my INR had been way lower than it should have been for weeks afterwards (it’s gone the other way now, and it’s now way too high!), but it turned out to be some weird virus that was doing the rounds which my doc said was causing pleuritic type pain with a lot of people.

I saw my surgeon a couple of weeks ago, and he was very happy with my progress. He’d been slightly concerned about the abdominal wound healing well because he’d had to trim it before stitching, presumably because of all the previous scar tissue, but was very pleased with the result. Unless I have any further problems (fingers crossed!) he doesn’t want to see me for another year - yay! Still waiting for the referral/appointment for a new neurologist, not only to monitor me from an IIH point of view, but to investigate the left side weakness I’ve developed, and he’s going to chase that up for me.

My INR’s still going haywire, as it always does after I’ve been off the warfarin for any reason, and takes ages to settle down again. I’m still needing INR checks every week or so, as it’s either going way too low or way too high, and doesn’t seem to want to stay in range for any length of time. *sigh* Still also waiting for a decision as well from the PCT as to whether they’re going to let my GP prescribe the testing strips for the self-testing machine. *sigh* That’s something I really need to chase up in the new year.

Meanwhile I’ve been having other health related problems (you wouldn’t think there was much else left for me to get, and that I’ve already used up all of the conditions known by TLA (three letter acronyms), but no!) and I’m hoping to get a referral to a specialist in the new year. More on that later though.

This week’s been rather mixed. My head’s definitely better than it was before the op, but it’s been an “up and down” week. I’ve discovered the morning bad heads creeping back in. I think though that’s because when you’re horizontal and gravity can’t do it’s stuff, the shunt(s) doesn’t (don’t) do it’s(their) stuff and drain as much either. It very quickly wears off once I’m vertical anyhow, which is good.

Though I’ve been pottering around the house a bit, I haven’t yet actually been out of the house since I left hospital, though I’m sure the outside world’s still there. Next week I’ve got a number of medical appointments, so I’ll be getting out and about and generally being upright more and doing stuff, so I’ll have to see how I get on with doing more. My doc’s signed me off work for another two weeks, and I’m thinking all being well maybe I’ll be able to go back to work then. If I do, it’ll be a record.

The fastest I’ve gone back before was after my last LP shunt, which was after 5 weeks. That time though I’d only got one wound, the back one, as it was just a matter of putting an extra valve in. I think after the original LP shunt op, it was probably something more like 6 or 7 weeks. The first DVT, a blood clot in my calf. Though I was recovered from the op itself, I was then off recovering from the DVT and getting drained of blood on a regular basis, as well as being injected with anticoagulants.

I’ll see how things go over the next couple of weeks.

Mainly this week I’ve been troubled by the niggling, and sometimes downright painful abdominal pains. New shunts, or newly messed around with shunts irritate stuff and you get all sorts of weird pains. The tubing of the shunt irritates the internal organs, as does the draining fluid, as bits of plastic and CSF were never intended to be floating around in there, and it takes a while for it to settle down and your insides to get the idea that the irritating tubing’s there to stay and there’s no use complaining about it. It settles down after a while, but it’s damned painful at times.

Aside from that, my head’s still rather sore, which is hardly surprising given that it had a hole drilled in it and then got a load of metalware fastening it together. It’s not so bad in the day, but I’m still very limited in what positions I can lay in at night. The fact I can only sleep on my left side is damned irritating, and my back’s protesting loudly at the moment.

Anyhow, stitches come out of the abdominal wound tomorrow when the district nurse comes. It’ll be the full 14 days since the op (doesn’t time fly when you’re having fun! ) so it had better have finally properly healed by now. When the district nurse came on Monday to inspect it, she said it’s always difficult getting ones around the navel to heal, because whatever you’re doing when you move around, that bit moves, so it often takes longer to heal. It’s not painful at all though, though I’m sure it will be tomorrow when they get pulled out. Anyway, I’m off to find a bullet to bite on in preparation…

(well actually, I’m off to bed, but that doesn’t sound quite as impressive )

This is what it said about me…

Your Five Factor Personality Profile

Extroversion: You have medium extroversion. You’re not the life of the party, but you do show up for the party. Sometimes you are full of energy and open to new social experiences. But you also need to hibernate and enjoy your “down time”. Conscientiousness: You have high conscientiousness. Intelligent and reliable, you tend to succeed in life. Most things in your life are organized and planned well. But you borderline on being a total perfectionist. Agreeableness: You have medium agreeableness. You’re generally a friendly and trusting person. But you also have a healthy dose of cynicism. You get along well with others, as long as they play fair. Neuroticism: You have low neuroticism. You are very emotionally stable and mentally together. Only the greatest setbacks upset you, and you bounce back quickly. Overall, you are typically calm and relaxed - making others feel secure. Openness to experience: Your openness to new experiences is high. In life, you tend to be an early adopter of all new things and ideas. You’ll try almost anything interesting, and you’re constantly pushing your own limits. A great admirer of art and beauty, you can find the positive side of almost anything.

I was quite surprised by the result (obviously they’d put some thought into the questions and their interpretation. Generally I’d say most of the analysis is probably just about right, though I’d probably argue that though I’m generally friendly, I wouldn’t say I’m trusting (House is right - everyone lies!), and I definitely have a healthy dose of cynicism, in fact the older I get probably the more cynical I get.

The fact that I’m apparently not neurotic is good to know, and on the “openness to experience score”, yep, that’s just about me.

They’ve got a “what kind of blogger?” test on there as well…I think I know the answer to that one - the type that gets easily distracted and forgets that I’m supposed to write something every day!

It doesn’t help though that my back has decided to not play nice today, and is having one of it’s days when the slightest movement either sets off sciatic pain, or quite literally gives me a pain in the arse - the nasty coccyx pain I get when either something in my back’s shifted due to the spina bifida or my LP shunt pressing on something. Hopefully once the painkillers I’ve just had kick in, it’ll either feel a lot better or I’ll be floating around on the ceiling and not care. LOL!

I’ve developed a new game in addition to the picking the bits of assorted gunk out of hair one though, and that’s guessing where the next pain’s going to pop up. I did have a shower this morning though and washed my hair for the first time, so at least most of the loose bits of gunk are gone now, and the rest of it’s not greasy and horrible. I was very careful washing that bit though, and didn’t mess with that part too much. I daren’t risk blowing it dry yet or putting anything on it, so I’ve just left it. At least it’s clean though. From experience, it’s going to be a few weeks before I’ll feel ready to put anything on it, and next time I have my hair cut I’ll have to warn my hairdresser to be very careful around there. It’s not quite so bad as the last revision I had though, because he hasn’t touched the reservoir/valve, so I haven’t got the swelling all around that area - it’s literally just the incision to get at the burr hole to get at the ventricular catheter.

Fingers crossed those painkillers work.

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.