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?
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?
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.
At the time of this ‘going to press’ (ie 7th August), my own shunt has decided to play up so tomorrow I am going to hospital in London to see my surgeon. I am keeping my fingers crossed for no more surgery – but I think I already know what the outcome is going to be! My apologies for not having updated this blog for so long and for probably not being able to update it for a while after today. I hope to resume to normal service shortly!
After having yet another discussion with a fellow shuntee about the odd things we can feel/hear with our shunts, I thought it might help to write about them here, in case newly-shunted people are worried about what they might be experiencing. I am currently on my third shunt in the thirteen years since my diagnosis and I have had two different types; the Codman Programmable and now a Miethke ProGAV. Both of them have presented different sensations and sounds once implanted. Some are quite funny, some are a little unsettling at first but all are easier to deal with once you understand what is causing them. So what does a shunt look like?
It looks like this:
This is a basic model; the valve part (lumpy part) will probably look different depending on what kind of model you have. (picture courtesy of neuroanimations.com).
If I had a pound for every time somebody has exclaimed; ‘you’ve had brain surgery? What was that like?’, I wouldn’t have to work. Well, maybe I’d have to work a bit – but I could certainly reduce my hours drastically. Brain surgery has a stigma surrounding it similar to that of cancer; people fear it. Even though, like cancer, treatment had catapulted in effectiveness and safety over the years, it still holds a dread for many people and when faced with it, it can be all-consuming. It’s not surprising really, given the fact that the brain controls your entire body. To have it once is certainly an experience, a story to tell at the pub. To have it nineteen times as in my case is, I suppose, a little odd.
I thought I’d do a series of short-ish (I can hear the cheers already) posts on what it really feels like to have brain surgery, to have a shunt inside you, to experience overdraining/underdraining and so on, to give an honest picture of what it’s like for those maybe facing it for the first time or who sometimes wonder if they’re the only ones who feel a certain way. Although every body is different, my experiences over the years and conversations with the many, many shunted folk I have had the pleasure to meet have taught me that actually, our experiences can feel quite similar, both physically and emotionally. I’ve linked to some pictures of scars and so on which you may not want to look at, so just don’t click on the links if so. So let’s start with the big one;
What’s it really like to have a brain surgery?
Well, I’m not going to lie; it’s not exactly fun. Given the choice of that and a champagne picnic in the park, I know what I’d choose. But it also isn’t necessarily all that awful. In fact, in many cases it can be better than you’d hoped. A lot of what makes it bad stems from what takes place in our minds and we can, to a degree, control that. This, I have learned, is the difference between having a horrible experience and an okay one. Yes, brain surgery can be okay.
Pre-surgery
The days leading up to the surgery itself are important; depending on how ill you are will determine what you’re able to do, obviously, but it’s good to have distractions if you can. My first ever brain surgery (to install the first shunt), even though it happened thirteen years ago, is crystal clear in my mind to this day. That’s because I was so damn scared. My stomach was in knots all the time (this is normal), I lost my appetite (also normal) and wanted to crawl under the bed until it was over (again, normal). Luckily I was well enough – just – to be driven around in a car so the day before my parents took me for a pub lunch (no alcohol!) to take my mind off it. It worked. It was a lovely Spring day and even though the thought of the surgery tomorrow kept looming up at me like a tidal wave, I found myself wanting to and needing to push it to the back of my mind. So I did and managed a lovely lunch with my family. Eating is important; keeps your blood sugars steady as well as your blood pressure level and that helps. It also helps if you can remind yourself of the thousands of people across the world who have brain surgery every single month and who are fine afterwards. Focusing on the teeny proportion who might be suffer a complication, I found, does not help. At all.
The morning of the surgery itself I was starving; nil by mouth, obviously! This doesn’t help the nerves so again, keeping busy is good. I watched a lot of crap telly that morning. When I didn’t want to watch telly any more, I read crappy magazines – you know, those ‘chat’ type magazines where people sell their stories of how their breasts ‘exploded’ after surgery and so on. Some of the stories are so awful (if they are in fact true) that brain surgery suddenly does seem like a champagne picnic in the park.
I did have a complete break-down though, mid-morning. Suddenly the fear and nerves got the better of me and I bawled like a two year-old, loudly, snottily and unashamedly. I’d never had a surgery and having seen my dad go through it when I was eleven (he had two brain haemmorhages and a blood clot and very nearly died), I simply wanted to crawl under the bed I’d mentioned earlier. It didn’t last long though. Fifteen minutes later and I felt a lot better. Cry if you need to and don’t worry what others think; also talk to your surgeon/anaesthetist about your fears. He/she will have heard it all before and be very kind and give you a hanky, the way mine did.
The anaesthetic room Funnily enough, this scared me probably more than the thought of the actual surgery. I dreaded it, not having had an anaesthetic before. I couldn’t see how I could be wide awake one minute and then something would force me to go to sleep the next. Fast foward thirteen years and the anaesthetic is my favourite part of any hospital stay. Yes, I’m being serious! I actually look forward to it! In the National Hospital, they have special anaesthetic rooms next to the operating theatres themselves, which I prefer.
The anaesthetic room at the National Hospital looks exactly like this one. I like ’em.
Operating theatres I find a bit large and scary. They’re okay; but I prefer the little cosy rooms next to them. It’s always the same; you lie on your trolley, blanket over you whilst the anaesthetic team take your blood pressure, check your heart rate by sticking those little sticker things you see on ‘Casualty’ over your chest, ask you lots of questions about who you are (they don’t want to knock out the wrong person) and then chat to you about all sorts to relax you and put you at ease. They’ll put in a cannula if you don’t already have one; that’s a very fine tube in the back of your hand so they can put the medicines in there without having to keep on injecting you. It’s a pin-prick, really not that bad. Then the fun starts! First they (sometimes, not always) give me what they call a ‘painkiller’ which will help relax me. This might also be given to you as a ‘pre-med’ on the ward. God, it’s fun. Seriously good stuff. It’s like having just had the BEST night at the pub, ev-ah. I have sometimes started singing after they’ve given me this. I kid you not. I sing loudly, too, like I’m hoping they’ll all join in. Sometimes they do; it depends on who’s in there with you. Having an anaesthetic truly feels like being very drunk; dizziness, sleepiness, a strange urge to giggle…sometimes you get pins and needles in your face. None of this is unpleasant, I promise. A bit strange the first time, yes…but not unpleasant. I think it’s fab. The really, really strange thing is ‘waking up’. I put ‘waking up’ in inverted commas because most of the time I’m not even aware that I’ve gone to sleep and then woken up later. I usually think I’m still in the anaesthetic room and the staff have just changed over. It’s that quick and that seamless. Seriously, you don’t even dream!
The Recovery Room This is usually where you’ll wake up. After nineteen surgeries, I am yet to wake up anywhere other than here. These rooms are much bigger than anaesthetic rooms but are not as cosy as hospital wards.
It’s big, it’s echoey and lots of beeps and alarms go off in here. Meh.
To be honest, waking up is not my favourite bit. Once I’m properly awake, I usually feel a bit uneasy because I don’t know what’s been done exactly during the surgery (sometimes when they ‘get in there’ they have to change their course of action) and I feel all groggy and confused. My heart rate tends to race and sets all the alarms off but it’s never dangerous; it’s just what my body does after anaesthetic. As I said before, every body is different so you may well not experience this. You will shiver because the operating theatres are kept very cool indeed and you’ll have been lying in there for hours. The nice thing is having the heated blankets put on you, which they have lots of..very toasty! Your throat will probably be sore from the breathing tube but you should be able to have sips of a drink. At the National, they always let us have a cup of tea (through a straw) and I swear, it’s The. Best. Cup. Of. Tea. In. The. World. Nothing ever tastes as good! Usually I’m pumped full of morphine for the pain so I can still feel pretty woozy from that alone. As you become more aware as the anaesthetic wears off, you may become aware also of pain and discomfort. Don’t be a warrior; take the drugs! After a few hours in the recovery room, once they’re happy with how you are, they release you for good behaviour. Back to the ward you go.
The first few days The first day itself you’ll probably feel sleepy but okay. They pump you so full of painkillers during the surgery itself that it’s relatively easy to keep on top of the pain. Back on the ward they’ll check your blood pressure, pulse, heart rate and so on every couple of hours. You can EAT! Hurrah! But don’t be surprised if you feel quite nauseous; lots of morphine can do this. I tend to vomit for hours if I have too much so I try and limit it. Morphine can also make going to the loo a bit weird; even if you have a full bladder, it seems to not want to come out. Again, all this is normal but it can be odd the first time! The physiotherapists or nurses usually try and get you up and about at some point on the first day unless you’ve had your surgery late or if you’re really floored afterwards. Don’t do what I tend to do and try and go for a walk on your own after five minutes. I blame the morphine again! It can make you feel invincible. I have got into trouble for leaving the ward to go for a walk as soon as I’m back. Wait until they get you to do it with their help, unless you want to end up in the ‘naughty spot’; right next to the nurses station so they can keep a close eye on you!
The next few days you should (hopefully) start to feel bored with being in hospital. I say ‘hopefully’ because this is usually a good indicator that you’re well enough to go home soon. The stitches or staples will probably itch a bit but as long as they’re not oozing or looking infected, that’s fine. Depending on what type of brain surgery you’ve had, you’ll probably feel some strange and not altogether welcome sensations in your head. With a new shunt, I feel very tight and stretched over where the new shunt tubing is. With my first one, I heard ‘gurgling’ in my head which was rather alarming. Turned out it was just the fluid passing through the shunt valve. Now the shunts I have ‘buzz’ when the valve works. Anything that alarms you, tell your surgeon. Chances are, he/she has heard it all a hundred times before and can reassure you.
The next few weeks I covered a few points in my post about recovery: click here to read it. I think the most important thing post-brain surgery is to remember that you’ve had a whopping great operation. Your brain is going to be swollen and bruised from having someone rummage around inside it. The anaesthetic itself is a powerful cocktail of drugs and that’s just for starters. So you’re bound to feel wiped out. Recovery can be hard; everything hurts, the scars itch like mad, you’re left with half a head of hair and resemble Frankenstein. I have added a photo of me looking absolutely rubbish post-op to reassure those who feel the same way that you’re not alone. I’ve also added three photos of scars immediately post-op – the other one’s here – and one taken a couple of weeks later. Scars like this can look a bit shocking at first. But you should be proud of every scar; they’re proof that you’ve been through a lot and come through the other side. Yay you!
As the weeks go on, you’ll feel stronger but don’t push yourself. It’s very easy to overdo things without realising. Rest when you need to, don’t rush back to your job too early (I once returned after ten days; stupid, stupid me) and hey, enjoy some R&R!! You deserve it! Heck, you’ve just had brain surgery!
I’m knackered. It’s hot (hottest day of the year apparently which, going by how low and below-average the temperatures have been so far this year, isn’t actually much of an achievement) and I’ve just returned from London. I know I need to update you all on what’s been going on and I’m very aware that it’s been a while but so much has happened that it’s literally been a case of not being able to find the time to sit down and write a lengthy post on all that’s happened. I am yet to master the art of the short-but-sweet post, as you will no doubt have noticed if you’ve been following this blog. Since my last post, Four Fab Things have happened and all of them have enabled me to make great progress. And here they are:
Fab Thing Number One
The last time I posted I had just had the three Medtronic shunts donated for Vietnam and was waiting on forty Bactiseal shunts to come from Codman so I could send them to Kenya. The Bactiseals are actually the ‘tubing-only’ bit of a shunt, without the valve bit which regulates pressure. At first I wasn’t sure if they would be able to use ‘tubing only’ but as it turned out it was perfect, because in Kenya they are having specific problems with the tubing-only parts of the cheap shunts they have to use! A shunt-match made in Heaven. Since then there has been a lot of to-ing and fro-ing with Codman (not in a bad way; just establishing what quality measures they need to put in place and what I need to do to meet those measures) and this week we finalised that; they need a printed letter from the neurosurgeon which Mr Albright has written, signed and sent off to me. So as soon as the letter arrives, I’m sending that (recorded delivery!!) to Codman who can then release the shunts to me – and off to Kenya they’ll finally go. I knew when I started this that it would be a slow process once the formalities came into the picture but now we have a procedure established, I can request the letters from the shunt recipients earlier and get the whole process running a lot quicker when Codman next have shunts to donate. So the letter is on its way, the shunts will soon be on their way and Codman and I have an quality procedure in place. Codman box – tick!
Fab Thing Number Two
A couple of weeks ago I received an email response to a general ‘can you help me?’ email I’d sent out to a couple of neurosurgeons about six weeks earlier. The reply was from Mr Lewis Thorne, consultant neurosurgeon at ‘my’ hospital (haha!), the National in Queen Square. He also works at the Royal Free in London. Lewis had actually operated on me about nine years ago when he was a registrar at that time for Mr Watkins. He had clamped off my shunt to see if I could cope without it as I was overdraining badly at that time so Mr Watkins had thought that there might be an outside chance my hydrocephalus had resolved itself and my brain was draining the fluid as well as the shunt, hence the very low pressures I was experiencing. Lewis was great, very kind, friendly and reassuring. Unfortunately having my shunt clamped off turned out to be one of the most hideous experiences of my life as far as hydrocephalus goes (in case you’re wondering, the most hideous experience was shunt infection – both of them). It wasn’t Lewis’ fault that it was so awful though, so I let him off. A couple of days later Lewis came to my bedside and gave me the wondrous news that he’d be unclamping my shunt first thing in the morning as the pressures were going into the high thirties by this time – they should be a maximum of about fifteen. No news has ever been as gratefully received in the history of the world; even Archangel Gabriel and his announcement of the birth of Jesus received a very muted response compared to my reaction to my upcoming shunt-unclamping. After that I didn’t see Lewis at all and assumed he’d left the hospital for pastures new. He had, initially, but returned recently. I found him whilst Googling ‘information about shunts’ one evening. I knew I needed to update myself on the different types of shunt available now so I knew which types would treat different cases of hydrocephalus – it’s not a ‘one-size-fits-all’ in the shunt world! Amongst the results was a link to a lecture that had been given at a neurological institute entitled ‘Everything You Need To Know About Shunts!’. Unfortunately it had been given in 2011 so I was more than a little late. But I pounced on it and was amazed to see that the person who had given the lecture was Lewis Thorne. If he knew everything there was to know about shunts, he was my man! So I’d emailed him back in April and had almost forgotten about it what with everything else that was going on until he replied, with an apology for being late in doing so, saying that he was very interested in my project and would love to help if he could. Result! I arranged to meet with him at his office for a chat and that took place last Wednesday. When I told Mum I’d be meeting with him, she said, ‘does he remember you, do you think?’. I had wondered myself, until I noted that he had begun his email to me ‘Dear Mr Adams’. Clearly he didn’t remember me. I did actually (gently) correct him on that and informed him that I am in fact female, to avoid a bit of confusion – and possible embarrassment – when we did meet, which he was absolutely fine with. I was surprised how nervous I was about the meeting; I had a neurosurgeon actively interested and offering help. I didn’t want to screw it up so found myself swotting as though for an exam on what I’d done so far! Needless to say, I shouldn’t have worried. When I arrived, Lewis was finishing a meeting with some doctors but on seeing me he literally smacked his hand to his forehead and said ‘Jordan! I should have known I’d recognise you as soon as I saw you!’ and asked me to wait in the strangest waiting room I’ve ever sat in. It was full of, er….skulls.
I’m hoping these aren’t previous patients from the National….
Not a magazine or a fish tank in sight. I had to resist an overwhelming urge to play around with them all. Luckily Lewis came in to get me before I had a chance to get my hands on them and rearrange them into the ‘conversations at a bus stop’ scenario I had in mind.
My meeting with Lewis was the most uplifting part of my work on this project so far. I had honestly thought he might offer me some much-needed advice, or give me a couple of contacts but he went above and beyond this. I was glad I’d swotted up though because everything was fresh in my mind and we were able to have a pretty lengthy and detailed discussion on options and plans. He said that this is a cause close to his heart as he had been out to sub-Saharan Africa a few years ago, taking some medical equipment to donate to charities and due to charity politics hadn’t been able to give what he had taken out there. He has ideas for reducing the costs of surgeries generally and also alternative uses of shunt treatments – I can’t go into everything now because a) it’s in the early stages and b) it’s too medical – he would have to explain it properly! Having him on board is so fantastic and such a relief, I can’t begin to describe it. I now have someone who seems as passionate about this as I am and who I can run all the questions I previously had no answers to by. He inspected the donated shunts from Medtronic (as they’re expired) and pronounced them ‘absolutely perfect!’. So we’re working together on producing a ‘business plan’ to present to the Vietnamese government and show them that the surgeries can be and are worth investing in both economically and – most importantly – to ease the suffering of the children. The cost to the government for nursing these untreated children for years until they die is most likely way greater than the cost of cheap but effective shunt surgeries using effective equipment. We are both aware that persuading a communist government who are currently heading down the US-based system of insurance health care is not going to be simple. Lewis wants to get something published as that will carry a great deal more weight. Once we have that in place we can roll it out to more governments who may need persuasion that shunting children is a very worthwhile and very necessary exercise. He also has access to spare shunts which he is sourcing this very moment. I am starting to wonder what the heck I would have done without him now. I had, as I said to him in our meeting, reached the limit of how far I could go alone. All the research in the world won’t change the fact that I am a mere patient who has neither the expertise nor the contacts medically to make sure I’m making the correct shunt decisions. I have expertise in how it feels to have hydrocephalus but that, and a lot of passion concerning the issue, is about as far as it goes! The fact that Lewis is so busy as a surgeon and is still happy to help and give me his time, free of charge, with the support and encouragement that he’s already shown in just a couple of weeks, has made me feel for the first time that we can truly make a difference to untreated children with hydrocephalus across the world. Power in numbers!
Fab Thing Number Three
The same day as my meeting with Lewis, I managed – quite by chance – to secure an impromptu meeting with the surgical manager at Medtronic, the very company who had kindly donated the three shunt systems for Vietnam. Louise (the lady in question) just happened to be at a hospital I was visiting to discuss shunt donations with. The person I was speaking with about their shunts suddenly broke off with a ‘Eureka!’ moment as she remembered that Louise just happened to be in the building that very day and would I like to meet with her? Would I!! Louise was in surgery, overseeing the use of a new surgical drill Medtronic had just produced so she came out to meet me, fully ‘scrubbed up’ in her blue theatre outfit. She was very enthusiastic about the project, the fact that I already had three Medtronic shunts and even more about the fact that I myself have a shunt. This is a detail that does seem to ‘wow’ the medical personnel I come into contact with. To me it’s no great shakes; I have a shunt. And yes, this is why I’m doing this project, because I know how hideous hydrocephalus can be. But sometimes I think they half-expect people with shunts to be ill-looking or not as energetic maybe as I can come across sometimes. I can sort of understand this, given that they are seeing people in hospital most of the time when they’re ill and either pre or post-surgery! I feel like a shunt commercial; ‘Yes! You too can look and act like this if your shunt works properly! Because you’re worth it!’. Anyway, Louise was fantastic and promised to look at the fundraising side of things as well as establishing some proper support from Medtronics overseas suppliers as they’ll have greater numbers of shunts to spare. And she was as good as her word; a few days later I received an email from Louise saying that she’d loved meeting me and she was currently talking to Head Office to get some plans in place. All from a chance five-minute meeting outside Theatre Two!
Fab Thing Number Four
Last but oh-so-not-least, I finally got to meet with Kim Nguyen Browne yesterday, from Go Vap Orphanage!
Kim looking happy with two of the shunts!
We met in London so I could hand over the Medtronic shunts so they can get back to Vietnam and be used. Meeting Kim was like meeting a long-lost friend, although we’ve only ever spoken on the telephone up until now. She, like all the others I have met and who are now involved in the project I only started in April, has an absolute heart of gold when it comes to helping others and I don’t give a toss how sappy that may sound. The work she’s done to help these children already and the contacts she’s established with other charities and organizations helping her is impressive to say the least. She was overjoyed to get the shunts and our meeting was far too brief for my liking but hopefully I may be able to meet her for a longer lunch when I next meet with Lewis or on another of my now-frequent trips to London. She was so helpful in what we discussed and she said she will post pictures of the children who actually receive these shunts and allow me to follow their progress so of course when that happens I will share with you! It will be so amazing to see the faces of the children who will (fingers crossed) soon be out of pain thanks to these shunts. And I cannot stress enough how good it felt to hand the shunts over to her. I thought that moment would take about six or seven months to come about, not two! Kim uses the following as the motto for the Vietnam Volunteer Network she manages and the work they do at Go Vap and all the other orphanages they help; ‘Together we can make a difference’. I’ve learned this lesson more than any other since I started. There was always going to be a ceiling on how far I could get alone. Now with Lewis, Kim, Louise, Mr Mallucci, Tim and Louisa at Codman and every single other person who has helped/shown an interest/given me a contact/urged me to keep going, I’m starting to see that this project now does have, and will continue to grow, LEGS! My determination to get changes made in both our healthcare system (STOP throwing useable products into landfill sites and send them to where they can be used to save lives) and overseas (don’t brush hydrocephalus under the carpet any more when seventy-nine percent of new cases this year will be in developing countries) is absolutely renewed. Not that it went anywhere; it was just wondering which path to take next. Now I have a path. With friends.
If you’ve just jumped in, you can read more about my Shunt Donation Project (no. 6 on the List)here.
And if you’re wondering what this ‘F-List’ I keep banging on about is, you can read about thathere.
Yep – I have shunts. Three Medtronic shunts – the whole system (valve bit which goes in your head, reservoir bit and all the tubing for the rest of the body). And a manual. They’re actually sitting on my kitchen worktop and I can’t quite get my head around the fact that only seven weeks after I started to try and get this off the ground, I actually have some life-saving equipment.
First three shunts. If this is how happy I am with three, what am I going to be like when the other forty arrive??
These first shunts were donated by a very kind, very helpful and very supportive lady from a hospital. I said to her that collecting them on Wednesday made me feel happier than a seven year-old on Christmas morning. As if that wasn’t enough, the forty shunts from Codman have passed their audit and are on their way! I don’t usually whoop but, seriously – whoop!
It’s been very interesting journey so far. I honestly expected to be faced with lots of ‘we know you mean well but here are the problems and reasons why you should maybe drop it’ conversations from hospital professionals. Not because I think they’re mean or negative or anything like that but because I had no clue about what limitations I might encounter, no idea about hospital policies regarding donating unused equipment and no inkling of whether I would be able to persuade them that this was worth doing. I couldn’t have been further off the mark. All I’ve had is support, help, encouragement and generosity. It’s heartwarming. To think that this is only after the first two hospitals have responded is a good sign. My initial plan to hit as many as I could at once I had to re-think as it was simply too many names/emails/phone numbers/different stages of development for my shunted brain to keep up with. This system is working better: choose a couple of hospitals and then hassle the hell out of them until they submit! (Kidding).
So now I need to get these shunts packed and off to their rightful owners; children currently lying in pain overseas. Quicker the better; I shall update you soon. To everyone who has helped and/or sent supportive comments so far, a MAHOOOSIVE thank you. Let’s keep going, eh!!
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.
