It’s really quite scary. I am still clawing on to Christmas. I know, I know…when it comes to Christmas, I am officially sad. I still have chocolate tree decorations saved and a couple of Christmas crackers and my 3D animated Christmas screensaver on my laptop and you know what? I DON’T CARE!! All my friends and family know how border-line obsessive I get over the festive period (in an understated way though; I don’t have flashing neon reindeer on my roof or anything like that) and by now accept that it’s just me. DEAL WITH IT. And no, I’m not sat here typing this whilst wearing my magic transform-every-fairy-light-into-an-image-of-a-reindeer glasses (she lied).
They are, however, REALLY, REALLY MAGIC.
Over Christmas and New Year I received lots of emails from readers of this blog asking all sorts of questions. I have tried to answer as many as possible but I know I’m behind so I thought that for February I’d put a shout-out to readers old, new and curious to ask me anything you like and I’ll answer all and sundry at the end of this month. You can ask whatever you blooming well like, shunt-related or not. I have a few as yet unanswered emails which I’m thinking of including in this end-of-the-month post as they’re rather interesting (fear not, your anonymity will be one hundred percent guaranteed; I’d never publish your names on one of my posts without your prior permission). So if you’ve been reading this blog and wondered ‘does she ever actually go out?’, ‘does she ever just want to rip her shunt into bits, the way I do sometimes’, or whatever else springs to mind, feel free to now go ahead and ask. And I’ll (hopefully) answer ’em all. If any questions overlap, I may need to pick one from that topic and answer that, but all topics will be addressed. So you lot get thinking and I’ll get back to….trying to get over Christmas.
ICP monitoring is a term you may have heard of if you have hydrocephalus. You may have had it before; this post is really aimed at those who are due to have their first, to give them a real idea of what it’s like. I am a firm believer in the ‘knowledge is power’ school of thought. I have had about ten or eleven episodes of ICP monitoring so am pretty old-hat at them by now but even so, my latest experience involved some new experiences so I thought it wouldn’t hurt to write a ‘what you can expect’ guide for first-timers. Doctors and surgeons do have a tendency to be a little blase about such procedures. They’ll tell you about what they’ll physically do and it all sounds very straight-forward. But of course they’ve never actually had a bolt screwed into their skulls with a probe sticking into their brains before so in terms of what it actually feels like (which is the bit we patients are concerned with), the experts are the patients, not the healthcare professionals. Looking back, I wish I’d had more first-hand information from a patient who had had it before, especially the removal part as this is done with you wide awake. I have a lot of patients-to-be on this blog asking me if I’ve had it and what it feels like which is why I decided to make a little video and actually film my bolt being removed – the link is further down. ICP stands for intracranial pressure, the pressure that is exerted by the CSF (cerebrospinal fluid) inside the ventricles of your brain.
Me ‘n’ My Bolt
When this pressure is within normal limits, you generally feel fine. If it’s too high or too low, you generally feel pretty crap. The ‘normal’ limits (as read on an ICP monitor) are between -10 and +15. Of course this will depend on the individual; I cannot handle pressures over +10 and below -12. If I had a pressure reading of +15, I’d probably have double vision yet I’ve been on the ward many times with fellow ‘bolted’ patients opposite me recording pressures of +25 and not really batting an eyelid! Generally surgeons will get concerned if the pressure heads towards +20 and will intervene at this stage. ICP monitoring is a really good diagnostic tool; it reads the pressure every minute of every day and records what’s happening when you’re awake, asleep, eating, standing, sneezing or just reading a book. At my hospital, the National in Queen Square, they hook you up to a laptop as well which draws out an impressive little graph which shows any spikes or dips in pressure at a glance. You may have ICP monitoring if you’re feeling generally off and adjustments to your shunt settings haven’t helped, or if your surgeons are suspecting a shunt malfunction of some sort. I was going to include some photos of the bolt and probe itself but having looked at the pictures I think I’ll leave it as they don’t look like the friendliest of items, to be honest!! Basically the unit consists of a long-ish probe and a bolt which is screwed into the skull; the probe slides through this bolt and is screwed into place with the nut. Literally a nut and bolt in your head. The procedure to insert it is generally done under sedation although sometimes it’s done under a local anaesthetic. It takes only a few minutes apparently. I say ‘apparently’ because I’ve never had it done under a local; it’s a personal preference. I know many who’ve had it placed with just a local anaesthetic and who don’t mind it at all. I can handle most things but the thought of someone drilling into my skull whilst I’m awake – nah. The hospital you’re at will probably offer you the choice so it’s up to you!
So, my friend the ICP bolt. Once it’s in, you’re quite literally plugged into the monitor itself, which looks like this:
An ICP monitor….during one of the rare times my pressures were reading as normal.
they usually set the monitor at your bedside and once you’re hooked up, they can read the pressures all day and all night as well when you’re asleep. You can ‘unplug’ yourself and go to the loo, go for a quick walk and so on if you feel up to it. Once the bolt is in, it does hurt a bit; it’s quite sting-y where it’s been screwed into place and if you raise your eyebrows up it stings even more. The solution is to not raise your eyebrows up or frown. Basically, get botox. You can’t feel the probe inside your head but you will feel it move if you forget you’re plugged in and get up to go for a walk without unplugging yourself first. Nothing bad happens; you just get yanked back to the bed but it does feel a bit odd for a minute!
It takes a day or so to get used to having wire hanging out of your head. At nighttime in particular, it’s best to clip the wire out of the way onto your pillow, otherwise as you toss and turn during sleep, you may find yourself inadvertently tugging on it and will get woken up repeatedly with a sore head. I find it best to use those tiny little hair clips
Clipped and ready for snoozeville!
(get them from Claire’s Accessories or similar) and clip the wire to the top of my pillow, making sure I’ve left enough room for me to roll in the opposite direction without pulling. Once that’s done, you can get a good nights sleep in. Just don’t forget to unclip yourself in the morning!
Depending on how long your surgeon is planning to leave the bolt in will probably depend on whether you attempt to wash your hair or not; if it’s only a few days, you can easily leave it. But for ‘monitor marathons’ like the four weeks I had it in for, you’ll probably want to at least try to wash your hair at some point! This is possible but you just have to be very, very careful; getting the bolt wet is not an option. It takes a bit of practice, but it’s do-able; I have found over the years that the easiest method is to gather the wire in your mouth to keep it well out of the way, make sure you can see yourself in a bathroom mirror (so you can see as well as feel where you’re directing the shower spray) and if you can’t see your reflection, get a friend/family member/nurse to carefully place some towelling around (not on!) the bolt to keep it dry. Then, when you wash your hair, you simply wash up to the towel. As long as you keep the bolt and surrounding area dry, it’s okay.
Keep the wire out of the way and avoid the bolt…then just wash ‘n’ go!
Some hospitals are stricter than others about this but to be honest I’ve never known any hospital keep ICP bolts in heads for as long as they do at the National, so the staff there are pretty understanding about it! Besides, I think it actually helps to keep the surrounding hair clean and not let it get very dirty over weeks, to help reduce infection. I have no idea if that’s actually true but it makes sense to me!
Adieu, Lil’ Bolt, Adieu
Having the bolt removed is often the part that most people are apprehensive about as that’s the bit you will be awake for. It only takes about five minutes to do so you can understand why they don’t bother going through the whole ceremony of an anaesthetic and besides, apart from the stitching-up bit, (which does hurt), it’s really not too much of a bother. I won’t lie; it feels weird. After spending all your time when it was in trying not to knock it or bang it or get the wire caught, it does feel very wrong to have someone suddenly grappling and tugging at it. I filmed the removal of my last bolt in October; the link is right here – don’t worry, it’s not gory – but in case you don’t want to watch it, I’ll describe what happens as best I can. First they get you to lie flat. This wasn’t always the case at the National so it may vary from place to place but nowadays, you lie flat. A nurse or medic will start off by unwinding the plaster or dressing which surrounds the bolt itself, usually soaked in iodine to keep everything clean. Then they’ll unscrew the nut on the bolt to loosen the probe itself. This can feel a bit strange, but noting too odd yet. When they actually pull the probe out, sometimes they’ll ask you to breathe out sharply after three, and remove it on ‘three’…this time they didn’t ask me to do that and all I felt was a slight sting and a strange but very fleeting feeling in my head…then it was out, in a second. After that (and you’ll see this in the video) it can feel like it’s all over – I keep asking ‘is that it?’, rather hopefully! But no, they then have to get the screw out of your skull. This is the bit that does feel odd; the screw is obviously screwed in tightly on insertion so it can be a bit of a job for them to undo it. My advice is just breathe slowly! When they take it out it stings again but nothing terrible. After that they’ll clean the area with iodine; it’ll feel sore but it’s quite a relief to know it’s all out and done with! The final thing for them to do is stitch you up; you may not actually need this but I lost some CSF when they took the bolt out so I needed quite a deep and tight stitch. Now, the truth is this bit does hurt. A lot, if I’m completely honest. I’ve not met anyone who’s had this bit done and who hasn’t thought it to be pretty darn painful. You can actually get a local anaesthetic put in first before they stitch you up if you want, but having had that once, I’d say it’s not really worth it because it takes about three injections to properly numb the area and that really stings in itself! Best to just grit your teeth, get something to grab hold of and get on with it! In the video, you’ll see my big fat fail in just breathing calmly through the stitching bit! It really, really hurt because they had to pull it so tight to stop the CSF leak…it definitely hurt more than any other one I’ve ever had if that’s any consolation! I think it’s because it had been in so long; the longer it’s in, the sorer it gets. But after I’d had a good slug of Oramorph, it died down after about an hour. And that’s it!
Yay! It’s gone!
Bolt is gone, you’ll have a nice stitch in your head and you won’t be tethered to a machine anymore! Freedom! You may be asked to lie flat for a couple of hours afterwards and then you can get up and go home. Very occasionally your head may object to all the probing, tugging and stitching and stage a full-on protest afterwards. Mine did this this time around but it’s never done it before and I know from the experiences of others that it is very rare. I developed terrible pressure, headaches, distorted vision and nausea for about thirty-six hours afterwards. But all that happened was that I was kept in, monitored closely (a CT scan was done but came up fine), given as many painkillers and anti-sickness as I needed and was only allowed home when I felt well again. It was a real surprise that this happened because I did feel very awful indeed, but it was a first. It very, very, very likely won’t happen to you; I am notoriously pressure-sensitive. But I have always said I’ll be truthful in this blog so I wasn’t going to lie about what happened this time around. Generally though, ICP monitoring is a little tedious (being tethered to machines is unusual) but is really, really helpful to your surgeon to determine exactly what your head and your shunt are doing so it really is worth having it done if it’s needed. The discomfort passes and you will hopefully feel loads better afterwards. Plus it makes for some very interesting photos to send to your friends/family/boss to impress them!
At the end of the day, although it’s not something I’d opt for voluntarily (given a choice between a days shopping and ICP monitoring, I know what I’d plump for), ICP monitors can really help get to the bottom of not-too-obvious shunt issues and this helps you get better more quickly. And best of all, they’re pretty darn safe. And when it comes to our brains and our health, that’s what we want!
Erm….so you know how I said in my last post that Vietnam work was going to have to be shelved for a bit due to the key contacts I was working with disappearing? Yes, well, forget all that. I had a final push at trying to get the Vietnam door open and….ta-daaaaah! Doors flinging open all over the place. But most importantly, these doors were being opened by the right people. So in the past couple of weeks I’ve possibly made more progress than I had done in the last six months.
Looking back, it almost makes me laugh. Because really, the key to achieving your goals is so simple. You need passion about what you are doing. You need to be doing it for the right reasons. You need to be able to dream big. And the people you decide to work with on the way need to be just as passionate, just as motivated for the right reasons and must be dreaming just as big. As the new neurosurgeon I was put in touch with (Martin Corbally) who opened a whacking majorly big door said to me regarding my project, ‘Jordan, doors are just waiting to open’. And now they have, it feels great. I won’t go into all of it because there’s shedloads of work ahead but I will say that it feels very positive, very exciting and very possible. But I will mention Hillary Browne of Helping Orphans Worldwide…the biggest heart I’ve encountered in a long time and a big door-opener as well. She does amazing work with her foundation (check out the link before) and is soon to be moving to Vietnam permanently so it’ll be fantastic to have so involved a contact actually out there, seeing as I can’t get on a plane due to my flipping noggin’. So all good and now all moving forwards once again! Stay tooned for news on this one.
I also had a very productive and lovely meeting with a major hospital in a major city, who are being majorly helpful. I very frustratingly can’t name them because they, like many who want to help in the donation of expired-but-absolutely-perfect medical equipment, are bound by internal rules which prohibit them donating; as a result, it’s all sent to landfill or for scrap metal. MADDENING! So they’re doing it very secretly. I panic slightly about this on a weekly basis but their determination to join this cause overrides their fear of a possible firing and they’ve said they are more than happy to risk it. Such determination of spirit is what fuels my belief that this will work. Indeed, they’ve donated lots already to me (I sent out a goodie-bag of neurosurgical bits to Ethiopia last month from them) and now they’ve come up with major full kits for neurosurgery and shunt insertion which are literally like gold-dust. They’ll be ready for me in July. Very ‘cited about that!
So many people have been offering donations for this recently…it’s so kind. They range from money to fax machines to offers of help carrying all the heavier stuff to London so I can pass them onto the volunteers taking the equipment out to whatever country it is (that offer is probably the one that got the most effusive thanks!). I’m in the process of setting up a charitable foundation with a website in production so that if folk do want to get involved in any way, it’ll make it a lot easier for them to do so. So far I’ve not accepted money from anyone as I didn’t want anybody but myself to be out of pocket in any way. But now the project is getting bigger and spreading its wings, I can see that if I carry on this way, I’ll end up bankrupt! Posting heavy equipment across the world is not cheap, nor are the UK rail fares to go and pick it up (I’m not able to drive for two years following excessive burr-holes-in-da-head). The hardest thing is choosing a name for the charity. What the bejeezus am I going to call it? It could be something safe and descriptive but I personally want it to be catchy, something which will get attention. Not just another ‘Society For…’ or ‘Association For…’ because the charity world is saturated with those (no offence to Societies and Associations; it’s just that I don’t want us to get lost). So late-night brainstorming sessions looking for a name are the current order of my day.
My, what a helpful post that was! I have great news on the development of the project but I can’t tell you what it is, I’ve received some amazing donations but I can’t tell you who they’re from and I’m soon to be a charitable organisation but I can’t tell you what it will be called. Aren’t you glad you read this?
Before I go, here’s a picture of true happiness….apparently all that’s needed to achieve this state is a warm lap, some sunshine and someone tickling the top of your head. Who knew?
Hello everyone! I’m so sorry for the mahoosive delay between my last post and now. I’ve been busy with work, sorting out shunts to send overseas and had not one but two laptop disasters;
Caught in the act.
first one caused by my cat secretly sleeping on the keyboard when I was out of the room and clogging up the fan with fur and the second caused by a mug of tea with a broken handle. You can guess the rest. But never mind, for ’tis Spring! Hurrah! I love Spring. Spring means flowers and bunny rabbits and seven very sweet little lambs appearing in the field next to your house, bouncing (and bleating) incessantly in the cutest manner imaginable. Any jokes about mint sauce at this point shall NOT be appreciated.
Thankyou for all your lovely comments during my absence.
One of my new little neighbours. Awwwww!
It’s great to know what people think about this blog; it’s not so great to hear of the difficult episodes some of you are dealing with regarding your own experiences with hydrocephalus but I do think it’s a comfort at such times to know you’re not alone. My own head is still being treated as an outpatient (outhead?) at the National Hospital with pressure adjustments being done every couple of months. We’re still not there yet following my glitch last year. My lovely registrar, Akbah, did say that it would take around six months to a year to get me well again and it looks as though (again) he is going to be correct. I’ve gone down three settings since I left hospital and I’m experimenting with things which might affect the pressure, such as my bed (usually raised on bricks at the head-end as I can’t bear to lie flat so am trying one brick, then two bricks, then no bricks), excercise, work hours and so on. I feel much, much better than when I left hospital so I know we’re going the right way. Is the fact I STILL feel ill frustrating? Yes. Does feeling down about that help matters? No. Onwards and upwards, then!
Changes And Developments With The Shunts!
I haven’t updated on the Shunt Donation Project as for a few months it’s been nothing but researching World Health Organisation guidelines, NHS guidelines, donation procedures, yadda, yadda, yadda….not exactly scintillating stuff. I needed to get some guidelines in place for both donors and recipients of shunts, to ensure that everyone would be singing from the same hymn sheet and that we would be doing things correctly. Anyhow, I had three lovely donations recently; the first from Lewis who sent me an email saying; ‘I have nine in-date shunts sitting here in my office for you’. Whoop-de-do! I collected them and allocated them to a new organisation I’ve recently started to liaise with, called the Reach Another Foundation. This is a non-profit organisation who work on various projects in developing countries to improve healthcare, education and living conditions.
Marinus Koning, Medical Director of Reach Another Foundation
Marinus Koning, the founder of the company and the Medical Director, was horrified when he first went to Ethiopia to discover that there were only two neurosurgeons for the eighty million people who live there. Through a neurosurgery training programme, that number is slowly rising; I believe there are five or six now….but still! As is often the case in developing countries, babies born with hydrocephalus are not deemed to be emergency cases and are pushed right to the back of any neurosurgical list. So of course, by the time they are finally dealt with, many have died and for the vast majority, treatment is not possible. Marinus had indicated on his website that a severe shortage of shunts was also a primary factor, which is why I offered him the nine which Lewis had got for us. He jumped at the chance and so I was able to put the first proper procedures in place, using our guidelines, signed statements and reports to ensure that no fraud can take place and that the shunts cannot be sold on for profit (given that they are worth hundreds of pounds, sometimes thousands). I had no concerns of Marinus selling them on the black market but it’s good to ward against such possibilities. So on Saturday just gone, I travelled to London with my Mum (girly day out) to meet up with Ciara Baxter, a volunteer for Reach Another Foundation who is flying out to Ethiopia in two weeks. It was really good to meet her; after all the endless faceless emails between myself, donors and recipients, it is a refreshing change to meet someone in the flesh! She was lovely and we had a good chat about the situation in Ethiopia and how we might be able to continue to help the situation. So I passed the shunts over and now they are on their way to Ethiopia and some waiting children. Marinus is very interested in joining forces with us to see what we can do together to improve things there so I am meeting with Lewis next week and then ‘Skyping’ with Marinus after that to get to hopefully get some plans in place. I shall keep you posted!
The second lovely donation I received was from Sophysa, the largest European shunt manufacturer.
Fantabulous shunts from Sophysa
I have been in touch with them for some time and have my very own ‘Ambassador’ there called Mohamed! He is a lovely man, very willing to help in whatever way he can. He was meant to send some shunts last year but then I not-very-helpfully fell ill so he sent them to me last month; a big shiny box of new, in-date shunts! These I have allocated to BethanyKids in Kenya as they were due to get some Codman donations last year but that unfortunately fell through. It’s very interesting doing these donations in terms of encountering enough hurdles to warrant an Olympic event. Although we are doing nothing illegal, red tape and high levels of potential fraud mean that we have to be a) very imaginative and b) rather cloak-and-dagger about the whole thing. Disguising valuable shunts as other invaluable items is now something that comes naturally to me. No wonder these poor people are having a hard time getting the treatment they need; not only are the governments not investing in their care, even donations from charities are often not even reaching them.
The final donation I had was from Adam Zeller, yet another lovely man who put me in touch with Mohamed. Adam works for a company called Fannin and they sent us some fantastic valves. No catheters but getting hold of catheters is not actually that difficult, so we should be able to send them out as full shunt kits. I don’t yet know where these will go. I have stated in the guidelines for donors which Lewis and I send out that all costs for postage are covered by myself. All three of these donors have refused to let me pay and Sophysa asked that the cost be instead donated to BethanyKids rather than go back to them.
All these donations from people who, frankly, have very full inboxes and busy lives, make me realise that it is actually rather simple to do this; you just have to be passionate enough about it. The donations which have fallen through have always had an air of ‘yes, sounds like a great idea but really busy at the moment’ with promises of donations and then nothing coming of them. The donations which have come through have just flowed, no problems, no barriers and no ‘gentle reminders’ needed from me! All the donors and the recipients have a real drive to get this done but with no fanfare or drama. They just get on with it and to heck with the extra workload. That’s why it works.
Now if only we could have the same success with the governments!! The Vietnam proposal looks as though it’s going to have to be abandoned for now; it has nothing to do with a change of heart or lack of determination. Lack of key contacts is the main cause, plus the fact that getting any information out of Vietnam is like getting blood out of a stone; it’s been exhausting and very frustrating and I’ve been working hard to try and make this happen but with limited contacts and no means of getting out there myself (I can’t fly due to pressure issues in my head), it seems more worthwhile to try this proposal with another country first, where I have more people helping me and therefore far more contacts! Whilst I’ve got Marinus so enthusiastic to make permanent change, I think the most appropriate thing to do is run with Ethiopia and see if a proposal to the Ethiopian Health Ministry could be a good idea. If that works, I can try again with Vietnam and maybe already having a successful pitch under my belt will help persuade Vietnam that if Ethiopia can do it, so can they. Ethiopia is a poor country so doesn’t necessarily have the money to fling at treating children with a fatal condition, whereas the Vietnam economy is very strong; it’s more a case of a lazy government by the look of things there! Anyway. Chats with Lewis and Marinus this week, hurrah! Action. Planning ahead. Working with people who want to help you bring about proper, long-term change. It feels great.
Oh by the way, I am looking into setting up a charity to raise money for this project; at the moment it’s not costing me too much money but I’m hoping that a proper established charity will help propel thing forwards. Name suggestions are very welcome!
At last! At long flipping last! I actually feel a little better in the head department. When I left hospital in October last year following my month with a bolt in my head, I didn’t feel much better than when I went in and certainly not as improved as I usually do following surgeries. It has been a challenge sometimes to believe that I would get better but sometimes you have to believe in the positive. Even if you have to force yourself to. Anyway, yesterday I managed to go for a run…the first run in six months. Oh, how I’ve missed it. It hurts my head when I run; the pressure can go a bit mad and my face tends to turn a worrying shade of purple, like a grape. It’s not attractive. But afterwards I always feel fantastic; I sleep better, my headaches are generally easier and I can eat cake without having to worry too much about it as my metabolism is so much faster. My surgeons know I run daily most of the time and have never told me to stop. So yesterday I felt very jubilant because before that there was no WAY I could have run; I was having difficulty even standing up from a sitting position. I had a pressure reduction in my shunt six days ago and I can feel the improvement slowly but steadily going on. Until this week, my bed was raised on two bricks at the head-end (I couldn’t tolerate lying flat) and every time I’d go to stand up the pressure would go too high for me to tolerate. So I told Saint Simon, who ordered me to come up the next day and he changed it for me. And now my bed is only on one brick and I can stand up a lot more easily. I think I’ll need one more pressure reduction in the next couple of months and hopefully that will be it. But oh, the relief of starting to feel better after almost a year of feeling constantly exhausted, headachey, pressured and sick. I’ve even taken on an extra work shift. Get me.
And now it’s shunt project time! Kim Nguyen Browne from Go Vap Orphanage has a much-needed brain scan for me of one of the orphans there who was born with half a brain and who was successfully shunted. Usually the children born with these sorts of complications are left with no treatment at all. Kim has unfortunately been very ill so instead of being in Vietnam right now as originally planned, getting the much-needed figures from the government, she’s staying here to recover. Poor thing; she’s missed the children she usually sees over there so much but her health comes first. Health always comes first! Given the change of circumstances Kim has asked if I can deal with the government in Vietnam. Me. Little old me. Oh, God. I’m meeting with her soon to collect the scan and to get a crash course in liaising with the Vietnamese government. She thinks my dealing with them will speed things along as she’s still too ill to do all this – which makes sense. But I feel the same way now that I did when I initially started this project; that I’m way out of my depth and have no idea of what I’m actually doing! Of course she’ll help me and will be there for support. And obviously I have Lewis on board now too so I’m not doing this alone. But it still scares the crap out of me. I can barely understand the motivations behind our own coalition government most of the time but at least they have a healthcare system which actually treats sick and disabled children (as long as they don’t dismantle it in the next few years). Trying to bring about change in a health ministry which has run the same way for years and doesn’t seem to have the motivation to treat sick and disabled children feels like it’s going to be a challenge to say the least. But then I knew my present recovery was going to be slow and drawn-out – and I was right. But I’m getting there and things are slowly improving. Pigeon steps forwards. But steps forwards nonetheless. I think we can apply that to foreign health ministries, right?
Happy New Year everyone! I hope you all had fantastic New Year’s Eve celebrations and that your hangovers haven’t only just cleared. It seems to be a bit of a crazy start to 2014, weather-wise; -53° in Montana? And nearly two weeks of storms here which have resulted in flooding a-go-go. All we really want here is some nice picturesque snow before the warm of Spring arrives. Sort it out, jet stream. My New Year’s Eve was quiet…so quiet I missed it. Literally. I had Jools Holland on the telly, was in on my own, struggling to keep my eyes open and was upstairs plumping up the pillows on my bed when I heard screams of ‘Happy New Year!’ and the straings of Auld Lang Syne coming from Jools Holland on the telly. Whoops. I missed midnight. Oh, well. I wished Hoshi a Happy New Year, had a small glass of Bucks Fizz, watched the London fireworks on telly (it looked very wet, windy and cold out there) and went to bed. That may sound sad but last year I chose to celebrate New Year on New Year’s Day rather than the previous evening. And it was one of the best New Year’s ever. So this year I chose to do the same and lying in my bed at 12.30am, listening to the gale-force winds, driving rain and hail, I was very relieved to be where I was and not at some party trying in vain to book a taxi. The next day, our planned New Year’s walk across the Downs had to be cancelled; the ground was simply too water-logged to even contemplate it plus it was terrible weather.
Flute, Swedish bagpipes, guitar and a long horn-thingy. Always an interesting musical mix at Paul’s!
Instead, we (‘we’ being the group who celebrated together last year by walking across the Downs) decided to head to my friend Paul’s cottage in the country. It was great. We brought food, they supplied drink (all non-alcoholic as Paul doesn’t allow booze in the cottage) and we spent the day being all cosy and warm whilst the storm howled outside, playing lots of the musical instruments that line the walls of the cottage. Paul is an amazing musician, as are many of his friends, so it always makes for a musical gathering (watch a bit of it here!). I had a go at the cello; my friend used to play it and I’ve always fancied having a go but coming across cellos to ‘have a go’ on isn’t easy….unless you’re at Paul’s cottage. Of course he has one. Only about eight of us managed to get to Paul’s in the end (he’s in a very remote location and the weather was, frankly, shit) but it was a lovely start to 2014. And not a sniff of a hangover.
See everything on the hanging on the walls and around the side of the room? All musical instruments!
I haven’t bothered with New Year’s resolutions because I only have one focus this year which is, I know already, going to take up the majority of my time and energy. So I’m not going to try and lose weight (well I’m not overweight anyway so that’d be a bit daft), stop smoking (I don’t smoke), cut down on alcohol (not been able to drink wine since last August – head doesn’t like it at the mo) or any of the usual resolutions. I spoke to Kim Nguyen Browne of the Vietnam Volunteer Network recently; she’d been pretty ill for a long time and was due to be in Vietnam right this moment, speaking to the government to help Lewis and I with our proposal. As it is, she’s here recovering, poor thing. She said that in the light of how her health is, it might be more time-effective for me to deal directly with the Vietnam Government. Gulp. Don’t get me wrong, I am more than happy to do so to help her out and if it means we’ll get the information we need more quickly. But I am also extremely nervous about doing so as I don’t know how they ‘work’ if you get what I mean. Speaking to top-level governments about things they are doing wrong isn’t something I do every day, really. I am meeting with Kim in a fortnight to have a crash course in schmoozing effectively with Health Ministries staff to get the information I want from them. If I have to bat my lashes, I will do it; if it means getting the figures we need. Kim also has a brain scan for me from Vietnam, which Lewis is particularly keen to get. It is of a little girl born with only half a brain who was successfully shunted at Go Vap Orphanage. Often this sort of complication is overlooked or deemed to be too ‘difficult’ and the child is left to die. Lewis, being a top neurosurgeon, wants to see examples of scans which have been deemed as too ‘difficult’ to treat to see if that is really the case, or if it might be a case of – shockingly – laziness on the part of the medical staff out there. It does happen. Quite a lot, apparently. If we can prove that these children can be treated successfully, that we can help make it cost-effective as opposed to nursing them in institutions until their deaths and above all else, that it is WRONG to just leave them when the economy of Vietnam is currently extremely healthy and thriving – shame these children aren’t doing the same – then we may be able to bring about change, at least in attitudes towards disabled children over there. So….meetings in two weeks with Kim and Lewis and then it’s Approach The Government time! My head had better behave.
Actually, I’ve re-thought the ‘only one resolution this year’ and I think I may actually have two resolutions; my second is to stay in contact with friends. I have lots, I stay in contact with most of them very regularly – but some not so regularly. Not because I don’t like them but simply due to the busy-ness of life. But hey, I have a mobile, Skype, email – there’s really no excuse. So making time for more conversations and meet-ups will also be a priority.
Head-wise, I’m going for a pressure reduction next week (from setting 11 to setting 10) as standing upright after sitting for any time longer than forty-five minutes is proving to be quite a problem. I can’t tolerate the pressure change that goes on! It’s fine when I’m at home but out in public it’s embarrassing as it makes me stop in my tracks and I have to breathe very slowly and steadily to try to bring it under control. So I’m guessing it’s still too high for me. It’s a long, slow process but as long as I get there eventually, what does time matter?
Sorry I haven’t updated for yonks, but I had forgotten during my nearly-two-year-surgery-break how long a recovery takes! Because I didn’t end up having a massive surgery I thought I’d bounce back quickly but the very unexpected deterioration after having the ICP bolt removed obviously made its impact known.
‘Helping’ by sleeping on the decorations.
I can’t believe it’s December; the year seems to have had a ‘blink-and-you’ll-miss-it’ effect. I’ve had two more trips back to hospital since I left; the first for another pressure adjustment (downwards) and the second one just a check-up to discuss things. The plan is to leave me alone over Christmas and the New Year (hurrah!) and try another adjustment in January. I’m currently on setting eleven; my surgeon thinks I’ll end up somewhere around setting eight. Funnily enough, when I was on setting eight before, between the end of 2009 to 2010, it was the best I had been. That was before two shunt infections decided to have a bit of a party inside me and to royally screw everything up. But that setting eight period – it was indeed good. So fingers crossed I’ll get back to that place but it’s going to take about six months to a year apparently. You can look at that one of two ways; six months to a year of feeling ill, tired, nauseous and frustrated. Or six months to a year before I’m back to my best-ever physical state. Can you guess which viewpoint I’m going to adopt?
I had another meeting with Lewis Thorne last week too; I like his working style – he was wearing jeans with very funky Argyle socks pulled over the top and no shoes. A man after my own heart; comfort equals a productive work day. When I’m working from home (which accounts for ninety per cent of the time), I wear slippers and lounge wear.
See? I wasn’t kidding.
Stylish of course – I can’t work if I look and feel like a slob (which is never, just for the record!). But the second I come in from a meeting, I strip off my smarter work clothes and get comfy. It’s a bit like a cluttered home reflecting the state of your mind. I’m a bit of a minimalist as I cannot stand clutter. I have enough furniture in my home with ‘touches’ to feel homey and cosey. But that’s it! Anyway. Back to Lewis and his socks. We had a good chat about everything and went over the more problematic areas of the shunt donation scheme. Lewis is brilliant at making things seem do-able. I asked him if he thought I was worrying unnecessarily about one particular issue and he said yes. I kind of knew that all along but it’s good to have clarification! We each have our ‘homework’ list of things to get on with and will meet again in January. And I think this time I’ll take my slippers with me. We did have a moment regarding the proposal for the Vietnamse government where we looked at each other with realisation of just how big a task this was going to be. We may be passionate about this but we are also realistic! Just getting hold of the information we need in order to put together the figures for a water-tight proposal to really persuade the health ministry to invest in the treatment of these babies and children is not going to be easy. And of course there is no guarantee that it will work. But nothing ventured, nothing gained. I shall update more when more has happened because at the moment it’s just lots of phone calls, emails, figures and reports which is on the face of it pretty boring!
So it’s December, it’s nearly Christmas, my decorations are nearly done (bought the wrong-size tree lights so need to get the right ones today) and I’m loving the Winter weather, cosy evenings and candles. I’ve decided to do the Photo-A-Day Challenge for December; my friend Jolene does it often and I always think ‘I really must do that sometime’.
Day 1: Red.
Then I go to the fridge and see Mr Samandouras’s quote (written on a Post-It) stuck on my fridge; ‘you know how they say “good things happen to those who wait”? Rubbish! Nothing happens to those who wait! Good things happen only to those who take action.’ Having a chronic condition can make one more prone to procrastination – well, it is hard sometimes to get all motivated when you actually feel like throwing up – but it’s just a case of frequently referring to quotes like that to keep your mind on the ball. The photo challenge is detailed here ; you simply take a photo a day based around the one-word description set for that date. Sometimes you have things to hand so it’s quite easy. Sometimes you need to use your imagination a little more. So I started it on December 1st.
Day Two: Where I Stood.
And I’m just finding out how difficult it is to take a photo a day when you have a Burmese cat around who a) always wants to be in shot and b) always wants to be in shot. What I have also found out is that doing it really makes you view the world in a different light. You start to look at your surroundings and try to figure out if they’d work as a photographic composition.
Day Three: Silver.
As you can see, Hoshi insisted on being in shot on the second day. She doesn’t like candle flames so the first day was easy. I’d already removed her three times from that bannister as she was ruining the angles and lines I liked in that shot; in the end I gave up and just let her sit there and scowl at me. I’m yet to upload yesterday’s and today I don’t know what to do; the title is ‘In The Cupboard’; all I have in my cupboard are tins, teabags and a loaf of bread! Thinking cap on. I’m very tempted to let Hoshi have her way with this one and just let her get in the cupboard. But that would be too easy. Shame I don’t have access to a fake plastic skeleton…….
Yay! I’m home! Three-and-a-half weeks in hospital, one ICP bolt, six pressure changes and one nasty post-operative episode later, I am home. I love my home so much that it’s very hard to leave it, but even better to return to.
My little house…soooo pleased to be back!
As you will know if you read this blog, I’ve been struggling with bad symptoms for a few months now and the recent stay in the National Hospital was to determine just what was going on (if anything) with my shunt. I’ll keep it short due to having been in there for weeks; we’ll be here till Christmas if I tell you everything in detail. I had an ICP monitor placed in my brain on my second day there and that stayed in for three weeks. An ICP monitor is a probe which sits in the brain and which, when hooked up to a monitor, reads the intracranial pressures every second. It charts them out as a graph as well so that neurosurgeons can look for any abnormal patterns or pressures. There is more on ICP monitoring in a post I’ve nearly finished, with a video of mine being removed for anyone who is facing their first and might be a bit worried about what it all entails. I’ll link to it here once it’s finished in the next couple of days. Once the bolt is in your head, it looks pretty odd but it’s okay. Here’s a picture of me totally rockin’ the look.
It’s a winning look, let’s face it.
This time around the pressures were very low to begin with, so Mr Watkins tried increasing the setting on my shunt in stages initially to try and get the pressures to read a bit more ‘normal’. However..nothing happened. I was on setting six to begin with and by the time we’d reached setting thirteen, still nothing was happening with the figures on the monitor screen. The only thing happening was my brain going into a tailspin of pressure every time the shunt was adjusted. We discovered that increasing the pressure in twos or threes wasn’t doing me any good; my brain clearly doesn’t like being tampered with on any level so we resorted to increasing the pressure just one at a time and giving me a couple of days to recover afterwards before we moved it again, hence the long hospital stay! When we reached setting fourteen, everything suddenly started to shift and within hours I had high pressure symptoms, which was odd to say the least. Mr Watkins thought that maybe my brain didn’t need the shunt now as much as I had done before, but that didn’t explain why nothing happened on settings six to thirteen; if my brain was draining partially on its own now, that would surely have been reflected on all the shunt settings, not just number fourteen. I am now on setting twelve and that is where I have been for two weeks. The team agreed that I needed to go home and rest my brain, especially after the ICP probe was removed; my head didn’t like that one little bit and I became very ill (which is very rare as I’ve had about eight or nine bolts removed with no problem whatsoever). Setting twelve is now proving to be too high so tomorrow I am going back to the National to see Simon and have the pressure reduced to setting eleven, to see if that starts to help. I really want to get back to normal so I’m praying that it does. So for the last week I have been resting and chilling out in my lovely little home, pleased to arrive back just as the turn of the season is about to commence.
Yes. Sheep and the Tardis in the field next to my home. I don’t get it either.
Autumn is one of my favourite seasons, along with Spring. The trees are just starting to turn from green to golden browns, reds and oranges and the air is full of the scent of Autumnal bonfires. The squirrels are back, sourcing their Winter food supplies for their kitchen cupboards and the whole countryside is full of earthy, woody, rainy, smokey scents. Blissful!
Lovely Autumn evening light
I adore the Winter months; don’t get me wrong, warm sunshine on your skin can feel great but I’m always relieved to leave Summer behind as I can’t tolerate heat too well; my loves are the rainy, foggy, crisp, cold, snowy Winters and the Autumns which proceed it. Of course, living in the countryside helps fuel my passions! I get all the glorious scenery and wildlife here too. My cat, Hoshi, is pleased to have me home and that’s a slight understatement. I had an excellent cat-sitter staying here for two weeks and the remainder of the time my Mum and a friend stepped in. A plus point of living in such a gorgeous property in the countryside with a hot tub in the garden is that people are more than happy to come and stay in it whilst feeding the cat.
Hoshi. She likes to warm her bum on my laptop for some reason.
I haven’t been able to get Hoshi off me, to the point where I look as though I have grown a furry appendage as she’s constantly lying across my shoulders as I go about my business, looking like some strange furry fashion accessory. Which purrs.
Two good things happened during my hospital stay which were totally unrelated with my head. Firstly, Lewis Thorne (the neurosurgeon who is assisting me with my shunt donation project) came to see me on the ward (‘social visit!’ as he put it) and after general how-are-you-and-what’s-happening chat, he told me that he’d sourced some expired shunts in the National that he was putting aside for us to send out. Hurrah! From what he said it sounded like there were quite a few of them. He’s on leave for a bit till early November so once he’s back I can hopefully go and have a look at them and get them out to countries in need. Hurrah for him. I also had an email from a donor I’m not allowed to mention because they would rather be kept secret, but it’s from a lovely hospital who also emailed me to say that they have a lot of surgical equipment for use in neurosurgery to give me. Some UK guidelines have recently been amended so they cannot be used here anymore but they are certain they would be absolutely fine to use in areas lacking in equipment. I am meeting with the donor tomorrow morning to have a look and pick them all up, then when Lewis is back I’m going to ask him for a little lesson in ‘identifying totally alien neurosurgical utensils’, as I didn’t recognise anything that was mentioned and don’t have a clue what it all does! So…shunts AND surgical equipment! T’was like Christmas.
The other good thing that happened involved another neurosurgeon. George Samandouras also works at the National and (I am certain) oversaw a fairly major surgery of mine in 2011 when Mr Watkins was out of the country. He writes a blog about his work which I stumbled across at the beginning of this year and it was through reading his blog that I became inspired to start this one, to log my shunt donation project and to keep myself motivated. Mr Samandouras includes amazingly inspiring quotes (his own!) in his blog and I was so impressed by some of them that I wrote a few of them out on Post-It notes and stuck them on my fridge. One is ‘it’s fascinating how human beings allow our performance to be affected by what other people might think of us! I find this extraordinary’ (this one helped when I worried about being laughed at by senior neurosurgeons who might think I was crazy in trying to stop the disposal of perfectly-useable shunts). The other one (which I still have up) is; ‘you know how they say “good things happen to those who wait”? Rubbish! Nothing happens to those who wait! Good things happen only to those who take action.’ Brilliant. Every time I felt myself slacking on my project, I’d read his words and get back to it. Anyway, having read his blog avidly all year (re-reading it often too), he walked onto my ward the first week I was there. He was treating a lady opposite me and he came to talk to her. He was there some time and I went to the bathroom and was thinking about everything I’d gained from reading that blog of his, how he had literally inspired me into action and as a result (hopefully) my dreams of getting unused shunts over to children in need might be realised. As I came out of the bathroom he was leaving the ward, walking towards me. I wanted to thank him for writing it, for inspiring me so much…but I became completely and utterly tongue-tied! Some people get star-struck meeting Madonna or other such celebrities; I become star-struck at the prospect of meeting Mr Samandouras! I quickly told myself to stop being such a loon and stopped him, introduced myself and thanked him for his blog and his inspiration.
I stand outside the hospital some evenings when it’s calm and quiet; it feels very safe to be here.
He was, as I predicted, totally charming and engaging and seemed genuinely interested in my situation; not that neurosurgeons are not genuine, only I didn’t feel he was just being polite. I want to link his blog to this one if he would allow it so I’m going to ask his permission first. But in case he’d rather not, I urge you strongly to look him up on Google and read the blog word-for-word. It doesn’t matter if you’re not interested in brains! He talks about all manner of things which inspire him, from music to travel to writing with a fountain pen. I promise you it’ll be time well spent. The man doesn’t have twenty thousand followers for nothing! (Update as of 24th October; Mr Samandouras emailed me this morning to say he’d be happy to link his blog to mine and also congratulated me on my ‘very well-written blog’. I went as red as my hair so it’s a good thing nobody could see it. Here is a link to his blog: please read and enjoy).
So tomorrow it’s back to the National…today I am feeling pretty rough so I am hoping that the adjustment will take me in the right direction. There may be no place like home but there is also no place like the National for when you’re feeling brain-weary.
THIS POST CONTAINS IMAGES OF UNTREATED HYDROCEPHALUS CASES IN CHILDREN WHICH YOU MAY FIND A BIT UPSETTING SO IT’S UP TO YOU IF YOU READ IT; JUST WANTED TO WARN YOU FIRST!
If you’ve read this blog before, you’ll know that I have hydrocephalus and that I have a shunt which basically, keeps me alive. You’ll also know that during my surgery-free eighteen months I’ve been working on a project to get shunts sent to countries which are lacking in treatment for hydrocephalus, which is a massive problem and a particularly cruel one as it affects mainly babies and children only; simply because if left untreated, they die before adulthood. I am currently awaiting surgery next week for my own shunt which is malfunctioning so have been unable to work on this for over a month now but I hope to be back on it soon. What has become very apparent to me since I started work on this is the restrictions we have placed on ourselves to prevent helping other countries, which is totally ironic seeing as the government seems to pride themselves on providing foreign aid. Chucking money at a problem doesn’t always solve it, however and in the case of hydrocephalus treatment, there seems to be a real lack of not only money invested in it but actual motivation to do anything about it. I think it scares health ministries because it’s ‘specialist’; it’s the brain, so it’s scary. There is a fear in some cultures of such a condition; it’s associated with demons and the child is often abandoned as a result of pure fear on the part of its family. There are not many neurosurgeons in affected areas – sometimes none at all – and the shunts needed can be very expensive for poor families and poverty-stricken countries.
Go Vap Orphanage looks after hundreds of children like this – shunts need to be donated due to high costs.
Here is where the UK and any other country in the world which has a good hydrocephalus treatment system in place could help. But I’ve experienced now first-hand the frustrations of not only hospitals and the surgeons in them which want to donate their unused stock to me, but even the shunt manufacturers themselves, due to what are (in my opinion at least) overly-rigorous checks, guidelines to adhere to and restrictions regarding the donation of expired medical products. I appreciate that we need to be careful. I would never want to send out equipment which is faulty, which is damaged or which is dangerous in any way and neither would the neurosurgeon who is helping me on this project. Of course checks need to be made, audits may need to be performed and in some cases, shunts will not be suitable. But the real problem lies with the guidelines issued by the NHS and the World Health Organization (WHO). For instance, point 7 of the WHO Guidelines For Healthcare Equipment Donations reads as follows: ‘There should be no double standard in quality. If the quality of an item is unacceptable in the donor country, it is also unacceptable as a donation‘. Expiry dates mean everything. Once a product is expired in the UK, it cannot be used, in adherence with NHS guidelines. The product may be perfect. It may be useable. There may be absolutely nothing wrong with it. But try sending that product over to the Congo where there is a dying child desperately in need of a shunt, any shunt, and it’ll be stopped at customs. Because we wouldn’t use it in the UK. The fact that we have thousands of brand new, state-of-the-art, shiny shunts available on tap, for free, for anyone who needs one here courtesy of the NHS isn’t taken into consideration in the WHO guidelines. The countries who need these perfect shunts don’t have another option. There is no choice, other than certain, slow, agonising death for the child concerned.
Recently The Sun newspaper covered the story of little Roona Begum from India, who had advanced hydrocephalus; you may have read about it. Two students set up a public campaign to get funding for her surgery, which was performed earlier this year, after pictures of her were circulated widely on the public media.
Roona Begum – a shunt was found for her and surgery was performed.
What I found interesting was reading the many hundreds of comments left by readers under the articles about Roona. It was clear that many of them didn’t even know this condition existed and were up in arms that nothing had been, up until now, done for her. It was fantastic that she was able to have the surgery and is – so far – doing well although many thousands still need to be raised for further surgeries; it was never going to be a quick recovery process with hydrocephalus that far advanced. But the whole story leaves a bad taste in my mouth. Not that Boona got treated – thank God for her and her family that she did – but that she is just one child. One child out of thousands and thousands who was lucky enough to have the spotlight shone on her and as a result get help. This has been going on for years. There are lots more looking exactly as she did. Right now, across the world there are children lying in huts, unable to move, hideous sores on the backs of their heads because of it, in pain with no access to medication to ease it, slowly dying. Just because the media hasn’t covered all their cases doesn’t mean it’s not going on, every day, right this second.
Governments need convincing, guidelines need changing
Once my surgery (surgeries?) is/are over, I shall be cracking on with the proposal for the Vietnamese government which I am working on with Lewis Thorne and Kim Nguyen Browne. Kim is working with the Government side and Lewis and I are putting the proposal together; we are aiming to prove once and for all that both economically and ethically it is absolutely not beneficial to continue to leave these children untreated. The cost of everyday nursing, clothing, food, medications (if there are any) and accommodation for terminal children until they pass away is huge compared to the comparatively minimal cost of a shunt surgery. And if many of the shunts can be donated, recently expired products from the UK, the US, Canada and Europe which have been passed as safe to use, the cost to these governments receiving them will be even less. If this proposal succeeds, we intend to roll it out to other health ministries and governments in developing countries. But the WHO and the NHS may need to be flexible and introduce a bit of wiggle-room regarding their restrictions on expiry dates. At the end of the day, as long as the products have passed some essential checks to ensure their safety and useability, they should be available for donation. They should not get stopped at customs. Codman UK should NOT be questioned on their ethics for wanting to donate expired shunts; this is what is happening there right now, hence the delay in getting the Bactiseal shunts to Kenya – and these are shunt manufacturers who are being challenged!! The only ethics that should be questioned are those of the people wanting to place a block on donation and instead send all the good shunts to UK landfill, thus ensuring that hundreds of children across the world will not get the treatment they deserve.
It’s all very well for people-in-suits to sit at their desks here, in their plush offices, after a nice lunch, and make such decisions. If they were out there, if it was their child, if they had no other option, if there was an offer of help in the form of a donated shunt, they’d take it. You can bet your life they’d take it. This picture features at the beginning and end of this post was kindly offered to me by a very talented photographer, Daniel Cima. You can see more of his amazing work at www.danielcima.com. This image sums up the horror and the pain – both physical and mental – of the children and their families caught up in the nightmare of untreated hydrocephalus. I couldn’t tear myself away from it when I first laid eyes on it. As I sit here and look at this image, my own shunt is failing and therefore I’m looking at it with some real understanding of the pain that child is feeling. Lying down is agony. But I have the reassurance that in a weeks time I will be in hospital and in a couple of weeks I’ll most likely have a new shunt. I have hope. I have a light at the end of the pain tunnel. And God do I feel guilty when I look at that photo. I want to run over there, hand them a shunt and escort them to a surgeon. We have hundreds of shunts here which will not be used. They’ll be thrown away. Please, WHO and NHS, have some sense when we approach you later this year. Sometimes guidelines are helpful and sometimes they spill over into over-cautious and restrictive. Please identify where you need to relax the reins and realise that just because a shunt would not be used here, doesn’t mean that it can not be used elsewhere. If the picture below cannot convince them that things need to change then I don’t know what else we can do.
This is a run-on from the last Diary; it was getting a little long to follow and now I have a treatment plan so I thought it would be best to cover the actual treament/results here, to avoid endless scrolling in the other post!
Pre-Surgery
Thursday Yesterday was a bad day. My head was bad before I went to sleep and I woke up with it feeling just as bad. Nothing helped it and by nine that morning I was starting to think I’d have to go to A&E. I called my neurosurgeons secretary and spoke to her, as this is what the hydrocephalus nurse, Simon, had suggested I do if things got bad. I spoke to her and she told me to go to my GP if possible, given that my local A&E department has not been great at dealing with shunt problems before unless they were real emergencies, like obvious shunt infections. My doctor was great; Dad took me there and she wrote a letter to the hospital whilst we were with her, faxed it over and then called them on the phone. By two that afternoon she called back to say that I was now on the list to be brought in and I’d be hearing from the hospital in a couple of hours, which I did. They have scheduled me in for admittance next Wednesday. It’s a week away but they feel confident from my symptoms that it shouldn’t escalate into an emergency before that time. If it does, I’m to go to A&E and they’ll haul me in from there. I’m having ICP monitoring done first and then, depending on the results from that, a possible second surgery to correct whatever had gone wrong (if anything) with the shunt.
It’s a great relief; I feel I’ve done my bit. I’ve tried to avoid the surgery, have taken care of myself, tried a pressure adjustment, rested and taken it easy and now that none of that has made the slightest bit of difference and if anything, I’ve got worse, it’s time to bring the surgeons in! It’s funny how I was so determined after my thirty-ninth birthday to not have another surgery before my fortieth and now that it looks as though I’ll be having not one, but two surgeries before my fortieth, I’m not bothered in the slightest. That’s because of the work on the shunt project I’ve done this year. I’m so grateful to have access to excellent treatment (free treatment too!) and I have the knowledge that if my shunt has kicked the bucket, I’ll get a brand new one instantly, that it makes any inconvenience aspect pale into insignificance. If anything it’s strengthened my resolve to get back on track with the project as soon as I am well again.
Codman UK contacted me yesterday to say that they hadn’t given up or forgotten but they were now being challenged about the ethics of donating expired equipment to be sent overseas. Tim Coyne, the guy I am dealing with at Codman, feels the same frustration that I do but is determined to see it through. That’s why I feel relaxed about it now; we’re on the same page so it will get done, I know it. But when I get better there is a bigger issue to address; the restricting rules and guidelines which are preventing equipment to be donated and which are effectively contributing to the high death rates overseas need to be looked at and (hopefully) relaxed so donation is a viable option for hospitals, not something staff could get fired for if they participate. But I’ll worry about that when I’m better. For now, I have a date and I have some hope of finding out just exactly what my shunt thinks it’s been playing at all these weeks! That’ll do me for now.
You can ask whatever you blooming well like, shunt-related or not. I have a few as yet unanswered emails which I’m thinking of including in this end-of-the-month post as they’re rather interesting (fear not, your anonymity will be one hundred percent guaranteed; I’d never publish your names on one of my posts without your prior permission). So if you’ve been reading this blog and wondered ‘does she ever actually go out?’, ‘does she ever just want to rip her shunt into bits, the way I do sometimes’, or whatever else springs to mind, feel free to now go ahead and ask. And I’ll (hopefully) answer ’em all. If any questions overlap, I may need to pick one from that topic and answer that, but all topics will be addressed. So you lot get thinking and I’ll get back to….trying to get over Christmas.
