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.
It’s a Bad Head Day. Most people have Bad Hair Days. Well, I have those too…notably for about six months following a surgery when the surgical team have shaved off half my hair. But Bad Head Days are more frequent. Today’s has been caused by the weather. My head does not like changes from high barometric pressure to low barometric pressure. Not only do I feel pretty rough, but I had my boss call me up this morning (I work from home – the only way I’ve been able to hold down a job for any length of time) to let me know that last night, during my work shift, I made four errors. This is odd for me. I’m usually uber-careful and double-check everything before I send it off as I am fully aware that a shunted brain doesn’t always produce perfect work. I double-checked my stuff last night too but seems that it didn’t make an awful lot of difference.
My Sofa: My Friend (on days like these). Hoshi the cat (curled up on the right) is also My Friend.
Today I am mainly on the sofa with a throbbing head and feeling glad that I don’t have to go anywhere/talk to anyone (apart from the cat) today. Well, until I start work tonight. Holding down a job with this condition is damn hard. We look fine, we seem fine – and out of nowhere, we can go a bit strange, with no warning. Working for myself and from home has been a Godsend for me. It’s literally the only way I’ve managed to always work, throughout the whole thirteen years since my diagnosis, during the periods when I’m not very ill or having surgeries. I was employed in the years leading up to being diagnosed and for four months afterwards in a high-pressured, high-energy job which I loved. I loved the buzz, the stress and pressure even and the salary! It only took three weeks after being back in the office after an absence of seven months (the amount of time it took me to deteriorate, be admitted to hospital, be kept in, have the barrage of tests that ensued, have the major surgery and recover sufficiently) to realise that keeping that job was no longer an option. I was brokenhearted. My company were too and very generous and supportive but it was a no-brainer (pun very much intended).
I will post about how I made the transition from Sales Administrator to Vocal Coach another time – it’s a story of determination, thinking outside-the-box, perseverance – nah, not really. It’s a story of complete panic and desperation. But the former sounds better. Right, my brain is positively staging a sit-in protest now (or rather, a sit-on protest; it’s refusing to allow me to move from the sofa) so I’ll post when I’m feeling better. Which will be tomorrow. That’s an order, brain.
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!
I have a hangover. This is not good. Hangovers are never good at the best of times, but when you have hydrocephalus, it’s a bad situation. I would like to state before I continue that this is a pretty rare occurrence. I have not become teetotal since my diagnosis; in the early years of my reluctance to accept my new condition I would sometimes go out and purposefully get drunk, as if to say to the rest of the world (but really more to myself), ‘See? I am just like everyone else! I can go out to clubs, dance too much, drink too much, suffer too much the next day and get over it! My life hasn’t really changed completely!’. Of course the reality was that I would suffer far more than a generally healthy person would and it would take me days to get over it. Luckily this phase didn’t last. I snapped out of it quickly enough once acceptance kicked in and since then I’ve been pretty healthy. But I still have a social drink and sometimes a glass at home in the evening with dinner. But hangovers – nah. They’re simply not worth it. For anyone wondering how drinking may affect a shunted brain, here’s the lowdown;
Alcohol swells the blood vessels in the brain pretty damn quick; if you’re erring on the side of higher-than-normal pressure anyway (which many shunted folk do), it’ll instantly make your head feel bad. If you’re erring on the side of slightly low pressure (which I tend to do a lot) it makes no real difference – yet.
It doesn’t take much to get drunk. I mean, hardly anything – two glasses and I’m phone-texting inappropriate people to tell them I love them.
Even slight increases/decreases in brain pressure can make you pretty dizzy and it’s worse if you have a shunt. Falling over happens.
The next day, dehydration of the brain means one cracker of a headache. This isn’t from the brain itself; there are no pain receptors in the brain. It’s all the surrounding bits which hurt. The meninges (layers covering the brain) have pain receptors in them. They also have blood vessels which, during a hangover, are stretched thin due to low pressure, due to dehydration. When they stretch, they irritate the pain receptors. The pain receptors wake up and get to work, hurting the crap out of your head.
Filling up on water doesn’t help either; the blood vessels in the meninges then get pushed the other way as the fluid gradually returns to the brain, irritating the pain receptors and – you get the picture.
So if hangovers of yore, before I was diagnosed, seemed bad, hangovers now are on epic proportions – even if I haven’t actually had that much to drink. Nowadays I have a hangover like this one about once or (sometimes) twice a year. I’m very careful with how much I drink. Sometimes, though, it just happens. Like last night. Friends over, long-overdue catch-up, singing along to music – it was great. I thought I was doing all the right things; I diluted my wine with lots of ice, drank a non-alcoholic drink every so often, had a pint of herbal tea before I went to bed (not in a pint glass; I’m not a heathen. I just like really big mugs which hold over half a pint) and it still didn’t make one jot of a difference. As soon as I opened my eyes, I knew. Lying still wasn’t going to help. Pretending I hadn’t actually had any alcohol wasn’t going to help. NO-THING was going to help this one. Ouch.
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.
