Er, excuse me, where did the year just go?? I am forty next month and I have not completed my F-List. This is not on. To make things worse, my shunt has decided to malfunction. Great timing, as always, Shunt! I had planned to go to Paris in September (it’s on my F-List) but now I can’t leave the house, let alone leave the country.
This is where I wanted to be on my fortieth. I love it here.
Maybe I’ll just have to be creative regarding that one. I have decided to start organising my fortieth birthday plans now. Because October is galloping up behind me at alarming speed and my gut is telling me that I am almost certainly heading for head surgery of some sort. So best to crack on with it now rather than wait and find myself in hospital, rather poorly and with no energy to organise a wash, let alone a party. I am now trying to decide what to do to celebrate what has turned out (rather surprisingly) to be an important birthday to me. Here’s why it’s important:
I’m grateful to be able to celebrate a fortieth birthday. Not that every time my shunt fails I think I’m going to die – I don’t. But in the last thirteen years I’ve had nineteen troublesome brain and stomach surgeries, two shunt infections, a blockage, collapsed ventricles in the brain, my brain fluid leaking down my neck (it really shouldn’t be on one’s neck) and a couple of genuine moments where I did, momentarily, find myself thinking; ‘hmm, this feels dangerous. I wonder where this is going to end up?’. Having genuine uncertainty, even if it’s fleeting, as to whether you’re still going to be alive in a couple of days is rather odd. Also, probably more obviously, the work I’ve done on my shunt donation project has taught me that I am actually very, very, very lucky indeed. Life should be celebrated.
I want to throw a nice party to thank my family and friends for helping over the years. I know what they’d say to that; ‘that’s what we’re here for!’. Well, yes it kind of is. But that doesn’t mean I take it for granted. The only way I can stay positive when I’m very ill is because of them.
Last year’s birthday was a washout. I was so ill, I couldn’t even stay to my own party. I ended up in bed by 8.30pm.
Although people may not see it this way, I’ve had a cracking first 39 years. I had a wonderful childhood, a pretty normal teenage existence (stroppy, spotty, thought I knew everything but still secretly loved hanging out with my family even though it was criminal to admit that), some very blessed years in my twenties working at Nick’s Music Studios which was the best job I ever could have asked for, and even though the years since then have been challenging, I’ve learnt a lot. I wouldn’t change a thing so far. Even the hydrocephalus bit. I have often said that if I were given the choice of going back to my life at 26, when I was diagnosed, and having the option of either NOT having hydrocephalus but staying in my life as it was at that time, with that boyfriend (we were about to sign a mortgage and probably would have got married), that job (before I worked at Nick’s Studios) and that perfectly-fine-but-unremarkable existence OR having hydrocephalus and ending up where I am now (single, only able to work part-time, feeling physically rubbish much of the time), I would without hesitation choose the latter. I prefer who I am now. I’m genuinely happy. Hydrocephalus and all.
So I feel I have lovely things to celebrate and lovely people to celebrate them with. But what to do? It’s hard to plan a big party when you’re feeling so ill you can’t function after 2pm and your memory is like a colander. I have no idea of what is going to happen be done regarding my head; I know they want to do ICP monitoring but what comes after that is anyone’s guess. I have pushed my party back to 10th November at the moment..I am hoping that if I do have to have a sizeable surgery, this will allow me to recover enough to attend my party! Here are the options I am considering:
Hiring a boat on the River Thames and having a floating party, with live music from my friends-in-various-bands. It would be a four-hour cruise past all the major sights and back again. It would also be pretty expensive. But fun.
Hiring a venue down here (by ‘here’ I mean Brighton as that’s the nearest large city to me and has the most options) with – again – live music and good food. It’s cheaper and it’s easier to accomplish if by any chance I am ill on the day. I could still go for a few hours whereas getting to London from here and then partying and then getting back when your head pressure is off is not really that enjoyable.
A cocktail party at mine; it’s big enough and I have a 1950s cocktail bar that I bought on Ebay when I moved out here. The downside of this is that I cannot leave if I feel unwell and it’s a lot of organisation/preparation/clearing up, which isn’t easy when you’re ill.
I had wanted to spend my fortieth in Paris but that is now impossible. I wondered about having a Paris-themed party instead, with French food, French music and French decor. I need some suggestions if anyone has any. Please feel free to list them below! My aching head would be grateful for them. xx
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!!
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.
The last two weeks have been rather busy regarding the shunt donation; lots of reading, lots of phoning medical secretaries to be passed on to the relevant people to speak to and lots of taking deep breaths and trusting that it will all work out just fine in the long run. Generally the feedback it good; everyone I speak to seems to think it’s a good idea with huge potential and is willing to help where they can. To say that this is heartwarming would be an understatement. More than anything though, it’s encouraging and it keeps me focused. So here’s an update on where I’m at:
I had contacted both my neurosurgeon, Mr Watkins and Simon, the specialist hydrocephalus nurse who is the first point of contact (he’s the go-between between Mr Watkins and his patients) to let them know what I was up to. I didn’t actually expect to hear back from Mr Watkins himself as he’s so busy with surgeries, clinics, conferences and lectures but Simon got back to me straight away with encouraging words and a heads-up about the forty shunts donated by Codman. They’re Bactiseal, which means it’s just the catheter part (the tubing which runs down the body) without the valve attached. When I first read this, I felt like banging my head against the wall but then once I stopped panicking that the whole batch would be useless, I remembered that the surgeons in Kenya are specifically having problems with the tubing of the cheap shunts they are using. They might be able to use them. The actual contact for Codman hadn’t been responding to the couple of messages I had left so I must admit to having a couple of fraught days full of worry. What if Codman changed their minds or just didn’t respond because they’re too busy? What if the shunts would actually be useless? ‘What if’ should be banned from peoples’ thoughts. It’s a pointless and very negative way of thinking because it focuses on nothing but speculation, rather than action. I could speculate for the next ten years about how successful this little venture might be but if I don’t actually do anything about it, it will remain just an idea and not an active project. Having spent the last thirteen years speculating about what I would want to do once out of hospital long enough to actually put my ideas into action, having worrisome ‘what if’ days kind of flies in the face of any kind of progress. So, along with Gloom and Doom, ‘what if’ is , from this day forth, banished.
Of course, I needn’t have worried. Louisa, the lovely lady helping me at Codman, called that very day, apologising profusely because she’d been on holiday and had forgotten to tell me. This is another reason I am consigning ‘what if’ to Room 101; it’s totally unfair to the lovely, professional people trying to help me out who would never just not respond because they’re too busy. It may take them some time to get back to me, but they do get back to me. She said that her manager, who was ‘very enthusiastic’ about the idea of actually putting their otherwise discarded shunts to good use, had decided to put the forty shunts promised to me through a final rigorous audit to ensure absolutely that they’re safe to be used by the surgeons they’re going to. Kind man. This happened (I believe) last Thursday so Louisa felt I should receive them sometime this week. I was going to go up in person to collect them from Manchester but seeing as I am in Kingston near Lewes, the fare alone was in the region of £100. Considering the fact that the only funding I have for this project is from my own pocket, I have to be realistic about costs. I can only work part-time because of my condition (full-time work: been there, done that, ended up in hospital from overdoing it) so my finances, although very carefully managed, are – shall we say – limited? Louisa said they’d be more than happy to courier them down to me and that when I’m up Manchester-way in the future (which I will be later this year) to say hello then. Makes sense. Especially as I have no idea yet how much it’s going to cost to fly forty shunts by recorded delivery to Kenya. So at the end of that day I felt a little more on track. Especially when I received a response from Mr Albright in Kenya (the neurosurgeon wanting the shunts) to my email explaining exactly what he’d be getting and could he use them? It was a resounding yes. Hurrah!
So the next morning I felt a little bouncy – like Tigger – as I went about my day. I decided to walk into Lewes to do my banking, rather than cycle, as it was such a beautiful morning.
Me when anyone tells me they’ve got spare shunts to pass on.
The walk is only a mile and a half but it takes me past fields, the newborn lambs (growing quickly!) which I had helped bottle-feed with my friends’ children at the farm behind my house a few weeks earlier and is perfect for either listening to inspirational music through one’s headphones or listening to the soundtrack of nature (especially nice when it’s raining; you can’t beat rain in the countryside for the sounds and smells it produces). Today however, I chose headphone music. Not the Tigger theme tune, I feel I should add. Just as I was striding along, fresh air in my nostrils and not particularly caring who could hear me belting out ‘Don’t Stop Me Now’ by Queen (you may laugh – but it’s perfect for motivation, energy and a general bloody good singalong), my mobile started ringing. Putting the song on hold, I answered the call (from a ‘Private’ number). It was Kat, a hydrocephalus specialist nurse (just like Simon!) from Birmingham Children’s Hospital. I had emailed her about two weeks previously and heard nothing back so I had got on with chasing other avenues. It has become apparent that neurosurgical staff take about two weeks to get back to me. A good guage to go by. Anyway, like Louisa, she was unnecessarily apologetic about the delay in her response and proceeded to tell me what a fantastic idea she thought this project was. ‘Why has nobody thought of this before?’. I am not a hundred percent sure that nobody has done this before actually. I just couldn’t find any evidence of it online and so far all the neuro peeps I’ve spoken to have certainly never partaken in any scheme like it. Kat was so enthusiastic, she could have been a fellow Tigger. She said that she wanted to present the idea in full to a meeting of neurusurgeons and neurosurgical teams which takes place in Birmingham once every so often; the next one is at the end of June. She asked me to forward a full outline in an email for her to read over so she can get some sort of report together. I was very touched by her response to what had been a rather desperate-sounding email two weeks earlier. No one I have spoken to about this has been certain about just how many shunts/valves/catheters they would be able to free up but to be honest at this stage, that’s not so important. What is important is making people who work in the field aware that shunts are being discarded and for every one that is, an opportunity to save a child in need of a shunt overseas has been missed. And even if the department I’m directly liaising with doesn’t have any to spare at that moment, they may know of someone who does have some. They network for me and in doing so open doors which I wouldn’t be able to open alone. It’s these open doors which may lead to other avenues of help which I may not have even considered yet; ‘it’s not what you know…..’.
So Kat now has a detailed email from myself and I have a renewed energy this week; hopefully by the end of it I’ll have the shunts. And then I’ll feel things are really starting to get underway. I’d better tone down the Tigger-esque excitement every time something good happens though. It could get really irritating.
If you’ve just jumped in, you can read 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.
Ooooh, I amHAPPY today! I spoke to Mr Mallucci at Alderhey hospital yesterday (his name is pronounced ‘Mal-ooch-ee’ but I managed to call him Mr ‘Malakee’ in our first conversation. Oops. I also managed to call him smack in the middle of a very important board meeting. Double oops. This did not, however, put him off talking to me and he was so helpful I couldn’t express my gratitude to him enough. As you probably know by now, Number Six on my ‘F-List’ (kind-of-bucket-list-but-for-approaching-forty: for the proper name just replace the ‘b’ of ‘bucket’ with an ‘f’ for ‘forty) is a project I’ve been planning during my thirties when I’ve been well enough and actually out of hospital/the operating theatres long enough to plan it. I want to get children and infants in developing countries where hydrocephalus is a very real – and very ignored – problem, with often next to no facilities or care available to them, treated. So to start with, I’m trying to set up a regular shunt donation programme from the UK to enable these desperately poor countries to at least have equipment available to them to actually perform the surgeries when neurosurgeons are able to get to them.
The Codman-Hakim valve can be implanted in children and either fixed (so the amount of fluid drained is set permanently) or programmable (the amount of fluid drained can be controlled, as shown in the picture).
Mr Mallucci is a neurosurgeon at Alderhey Children’s Hospital in Liverpool and I sent an email to his secretary a few weeks ago explaining who I was, what I wanted to do and why. I then asked if he could help in any way. Turns out that he can. He told me that he was very keen to get on board and has already spoken to Codman (Codman Hakim is a major supplier of shunt valves in the UK). He said that Codman, like him, were very keen to participate and sounded very positive about setting up a donation system. He is speaking to them again (I think today) but said to me to leave it to him and he’ll get a first batch of shunts over to me asap. If hugs could be given over the telephone, he would have got a bear-sized one. Finding that first open door is a major step forwards; now that it looks like both Codman and Alderhey Hospital will be on board, it should make it easier to get other neurosurgical units and shunt manufacturers (I have all their details – there is no escape) to participate. So this weekend I shall be completing my email list of all the other neurosurgical units and surgeons I need to contact and keeping everything crossed that they are as keen as Mr Mallucci and Codman….and if that works then I may actually get to start on Number Seven on my F-List. Who knows…..but today is a good day. God bless kindly neurosurgeons and shunt manufacturers.
If you’ve just jumped in, you can read 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.
Two days ago I had my first chat with Kim Nguyen Browne, founder of the Vietnam Volunteer Network (VVN). It was so good to have a talk with her about what could possibly be done to help the children with untreated hydrocephalus over there. The situation there sounds even more desperate than I thought it was and has only made me even more grateful (if that were possible) for the treatment and support I get as a hydrocephalus patient in the UK. As Vietnam is a communist country, the Go Vap Orphanage is government-run although it is primarily funded by donations. Currently there are about two hundred and fifty children residing there, over ninety percent of whom are handicapped, either mentally, physically, or both. As far as shunting patients for hydrocephalus goes, the situation is complex. VVN has a Medical Manager who contacts shunt donors and medical companies for any free material they can offer. Medtronic, a manufacturer of shunts used for hydrocephalus treatment, recently donated ten shunts to the orphanage. However, only two of those have been used. The window of opportunity for operating is very small as it depends upon so many different criteria coming together at the same time to enable it to happen. Kim explained to me as an example that out of, say, twenty-five children who are assessed and presented as being possible patients for shunts, only about eight are selected to have MRI or CT scans to determine the extent of their problems and whether surgery is possible. Even then, once the results come in, the actual number which can be operated on is greatly reduced as serious complications are often revealed, such as having only half a brain, too much fluid or too small a brain. So out of that initial group of twenty-five children, only three or four may be operated on. The rest are left to die naturally – which can unfortunately take years, as in the case of Hien. Obviously money – or rather, a severe lack of it – plays a huge role in this. VVN works with ADM Vietnam, a non-profit organisation funded, again, mainly by generous donations, which helps pay for the surgeries on the orphanage children. They provide free operations and together with donated shunts, this means that the poorest children, often transported from other hospitals, have at least a chance of survival. The other problem is that neurosurgeons are thin on the ground and only come out to the orphanage once in a while – which may mean that some children who would have been eligible for surgery may literally miss the boat. If the window for surgery is missed even by a couple of weeks, it can be too late as operating will then pose so many risks due to an accumulation of too much fluid, that the complications and possibility for a bad outcome are significantly raised – and often in these situations the decision is taken to forgo the surgery.
Kim explained to me that in Vietnam, since the war, there has been a prevalent ‘survival of the fittest’ attitude running like a prominent vein throughout its people. Surgeons will generally only operate on those they feel will make a significant recovery; the other patients are simply washed, fed and watered, but not medically helped.
One of the Go Vap babies with pronounced hydrocephalus
Even though these doctors and nurses are efficient at keeping these children clean and fed, they don’t give love; this is given in abundance by the volunteers who spend time with the children, entertaining them, talking and singing to them, giving them massage or simply just sitting by their beds and holding their hands. The stark reality of this being the only love they are likely to receive, having no families, as they slowly die in agony is simply shocking to me in this day and age. Especially when I saw the wounds recently on the head of Hien, shortly before she died in March. The link on her name will take you to a video of Hien receiving a massage from a volunteer some years ago. I may post the photos of her wounds and of her deteriorated state up soon – with a warning first as they are horrible to see – as it is Hien’s story and that of the Go Vap Orphanage which motivated me to act. Horrible though the images are, they kind of keep me focused on trying to get this situation improved. I am only relieved to know that this little girl doesn’t have to suffer so badly any more.
So today I am speaking to a neurosurgeon from Alderhey children’s hospital who has kindly agreed to speak to me regarding shunt donation possibilities. I am sending emails to various neurosurgeons today with some of the information which Kim gave me, to follow up next week once they’ve (hopefully) had a chance to read them. At this stage I’m hoping just to get a good idea of those hospitals which may be able to donate shunts and also to guage which, if any, neurosurgeons might be interested in taking a look at these scans of the children who are deemed as being ‘inoperable’. As the hydrocephalus has been caused by chemicals in the food chain, surgeons in this country are unlikely to have seen some of the problems arising, such as ‘literally no brain present’. It could be that in some cases, the expertise we have in this country could be applied to these patients. We may have solutions here which are not available there. That’s when I need to start seeing if my F-List: Number Seven is a possibility. But that door hasn’t opened yet. I will update when I’ve spoken to the neurosurgeon. Fingers crossed people! By the way, if any medical professionals are reading this and have thoughts/ideas/contacts which might be useful, pretty please send them to me!
If you’ve just jumped in and are wondering what this ‘F-List’ I keep banging on about is, you can read about thathere.
You can read about how the project written about below is now developing here.
Number Six: Set up a shunt donation programme from the UK to aid countries where treatment is limited or non-existent. Number six in my list is the most important one to me. It’s also the reason that my list is rather short, compared to many Bucket Lists and Must-Do-Before-I-Change-My-Mind lists out there. Number Six is going to be a long project and I don’t expect to have it fully completed and established by the time I’m forty. I want it to be set-up and running but I expect there to still be some teething problems! The fact that I intend to have another ‘F-List’ next decade (F for Fifty, natch) is the other reason for my F-List being short-ish; I’m doing my life goals in bursts, head-permitting (a little like the weather). Back to Number Six – being able to help disadvantaged countries in their treatment of hydrocephalus is a goal that I’ve held since about four years after I was diagnosed. I wish in a way I had wanted to do this before four years in but I was finding adjusting to life with hydrocephalus pretty hard at that time and was in a bit of a mess to be honest. The hospital stays were intense and scary and pretty relentless. But in retrospect I think it’s a good thing that I found it so hard to get through; if it had been a breeze, I probably wouldn’t have felt so compelled to get something done in countries which have limited or no treatment. Knowing now what rising pressure in the brain feels like, the panic it creates, the horrible symptoms and completely alien feelings, the thought of children going through it with no option of treatment is simply incomprehensible to me. So around 2005-2006 I started to make notes on what I wanted to do someday when I was well enough to really apply myself to the cause. There was a lot of reading and research to be done and it would take a long time, I knew – but I never abandoned the idea. The Go Vap Orphanage
I first came across the Go Vap Orphanage on YouTube; I was looking for videos of anything hydrocephalus-related. I was having another relentless barrage of problems with the shunt; I was overdraining terribly (see more under the ‘Hydrocephalus’ category for overdraining symptoms and experiences) and was in hospital far more than I was out.
One of the volunteers at Go Vap Orphanage
Treatment was slow and cautious due to the complexities of my particular situation and so I was ill for a long time, unable to do much at all apart from lie flat on the floor for most of the day. As I scrolled through the videos (many of them surgical ones aimed at medical students which wasn’t really what I was after; I wanted to watch people talking about their experiences of having the condition, to see if anyone had severe overdrainage so I could maybe get some advice), I saw an image which stopped me in my tracks. It was of what looked like a hospital ward, but was obviously not one from this country. I clicked on the image to watch the short video. What I saw in that 90 seconds changed my life forever; I knew at that very point that I would not – and could not – ignore the issue and that even if it took years, I would do my utmost to get a shunt donation programme together. Go Vap Orphanage provides food, housing, and education to about 250 children in the outskirts of Ho Chi Minh City. Many of the children are born disabled as a result of Agent Orange, a toxic defoliant containing dioxin which was sprayed by the U.S. over Vietnam as part of its herbicidal warfare programme called ‘Operation Ranch Hand’. The companies who manufactured Agent Orange, as well as the U.S. government actually knew about the cancers & adverse health effects but did not even warn the soldiers who sprayed the defoliant. It entered the food chain and subsequently, hundreds of children are still being born today with birth defects and disabilities, hydrocephalus being one of the most prevalent.
Kim Nguyen Browne, founder of the Vietnam Volunteer Network, with one of the beautiful children she helps
Kim Nguyen Browne, the woman in the video, was herself adopted from Go Vap Orphanage and, wanting to give back to the place which had cared for her as a baby, set up the Vietnam Volunteer Network in 2008 to enable volunteers to help the children affected. Today it is thriving, with regular donations, some support from medical companies and healthcare professionals and volunteers flying in from all over the world. But it is still a desperate situation as far as hydrocephalus is concerned; the video I had watched had been the ‘terminal ward’ at the orphanage; as the video camera panned around the room, the scene was horribly bleak. Countless iron cots with dying children. ‘Too late’; the terrible words which are just unbearable to hear when faced with a picture like that. Here is a link to the video I mentioned and which I watched; Kim is in it: The Terminal Ward At Go Vap Orphanage.
The first ‘Great Plan’ – which I’ve currently shelved!
My first plan was to see if it would be possible to set up a regular training scheme for UK-based neurosurgical trainees and/or registrars to assist in existing neurosurgery training programmes in countries such as Uganda and Haiti. The benefit of spending so much time in hospital is that you get to chat to all the medical staff at length about their backgrounds. I quickly discovered after many stays at the National that neurosurgical training placements were difficult to get (I think there are only thirty-four neurosurgical units in the UK). In developing countries there are often no trained neurosurgical staff to carry out pre-operative and post-operative assessments, initial assessments of potential patients and to assist in theatre. Of course, the optimum goal is to have neurosurgeons trained in their own countries to add to and develop the existing health infrastructures which already exist. However, training takes years, funding is short and facilities are in even shorter supply. So I thought; well, why not try to get a regular rota of UK trainees to work six-month placements overseas before returning to the UK to continue their studies. Once a group has returned, the next can fly out. It sounds so simple, doesn’t it? And if it were that simple, it would have been set up already. However, I couldn’t find any evidence of established programmes like this; CURE Hydrocephalus in Uganda has medical volunteers flying out but it is on an basis with no consistency.
Another inspirational individual; Benjamin Warf and some of his patients in Uganda.
I contacted Dr Benjamin Warf, who heads up the neurosurgeon training programme in Uganda and put my ideas to him. He liked them, said they were good – but that logistically the situation was very difficult. He suggested I find out first if registrars and trainees would want to do it and if their medical facilities would be prepared to let them go and then return. I contacted another neurosurgeon, Mr Ellenborgen. He said the same thing; great ideas, noble ideas; a logistical headache. So following Mr Warf’s advice, I started lurking on medical student forums, became a member of various chat rooms and read and read and read….and it quickly became obvious that this was a biiiiiiiig job. Too big to even know where to begin with it. So many things needed to be addressed; funding, accommodation, training facilities, sufficient patient numbers to warrant the time and expense, willing participants and medical establishments – I literally didn’t know where to go first. Every time I sat down to ‘have another go’, I’d end up with another banging headache, the way I always do after too much concentration. I needed to start with smaller, simpler steps. So the Overseas Training Programme is on hold until I feel stronger to address it again – or until I have a ‘Eureka!’ moment. IT IS NOT SCRAPPED THOUGH. I REPEAT, IT IS NOT SCRAPPED. I don’t like quitting; it’s simply on hold as I have now to get on with the plan I am capable of doing: (Update: as of June 2013 this project idea was scrapped under the advice of the neurosurgeon I am now working with! All for very good reasons. The shunt donation project is now what we’re focusing on).
The second ‘Great Plan’ – not so ‘great’ in terms of scale but equally great if it means saving childrens’ lives
The second – more immediately ‘do-able’ plan is for shunt donation. Shunts are often key to surviving hydrocephalus, yet the cost of buying them and implanting them means that for many infants and children, they are simply not accessible. Children are left with no options. In Vietnam, due to costs and difficulties in screening those who may need surgery, usually only the fittest are operated on; the rest are left to die naturally. Kim had mentioned in her video about donated shunts; feeling that this may be a more realistic goal, I decided to pursue this option and see if I could a) find out just how many shunts are discarded and how many could actually be used and b) get my mitts on ’em. Operation Shunt is on.
You can read about how this project is now developing here.
