{"id":157,"date":"2013-04-05T16:50:16","date_gmt":"2013-04-05T16:50:16","guid":{"rendered":"http:\/\/jordantheheadcase.wordpress.com\/?p=157"},"modified":"2024-06-01T11:12:56","modified_gmt":"2024-06-01T11:12:56","slug":"the-f-list-number-six","status":"publish","type":"post","link":"https:\/\/jordantheheadcase.com\/index.php\/2013\/04\/05\/the-f-list-number-six\/","title":{"rendered":"Shunt Donation Project – a big challenge ahead"},"content":{"rendered":"

If you’ve just jumped in and are wondering <\/span><\/strong>what this ‘F-List’ I keep banging on about is, you can read about that<\/span> here<\/a>.<\/strong><\/em><\/p>\n

You can read about how the project written about below is now developing here.<\/a><\/span><\/strong><\/em><\/p>\n

Number Six: Set up a shunt donation programme from the UK to aid countries where treatment is limited or non-existent.<\/span>
\n<\/strong>Number six in my list is the most important one to me.\u00a0 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.\u00a0 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.\u00a0 I want it to be set-up and running but I expect there to still be some teething problems!\u00a0 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).\u00a0 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.\u00a0 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.\u00a0 The hospital stays were intense and scary and pretty relentless.\u00a0 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.\u00a0 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<\/em> of treatment is simply incomprehensible to me.\u00a0\u00a0 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.\u00a0 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.
\nThe Go Vap Orphanage<\/strong><\/span>
\nI first came across the Go Vap Orphanage on YouTube; I was looking for videos of anything hydrocephalus-related.\u00a0 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.<\/p>\n

\"One<\/a>
One of the volunteers at Go Vap Orphanage<\/figcaption><\/figure>\n

\u00a0 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.\u00a0 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.\u00a0 It was of what looked like a hospital ward, but was obviously not one from this country.\u00a0 I clicked on the image to watch the short video.\u00a0 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<\/a> provides food, housing, and education to about 250 children in the outskirts of Ho Chi Minh City.\u00a0 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 \u2018Operation Ranch Hand\u2019. 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.\u00a0 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.<\/p>\n

\"Kim<\/a>
Kim Nguyen Browne, founder of the Vietnam Volunteer Network, with one of the beautiful children she helps<\/figcaption><\/figure>\n

Kim Nguyen Browne<\/strong>, 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 <\/strong><\/a> in 2008 to enable volunteers to help the children affected.\u00a0 Today it is thriving, with regular donations, some support from medical companies and healthcare professionals and volunteers flying in from all over the world.\u00a0 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.\u00a0 Countless iron cots with dying children.\u00a0 ‘Too late’; the terrible words which are just unbearable to hear when faced with a picture like that.\u00a0 Here is a link to the video I mentioned and which I watched; Kim is in it: The Terminal Ward At Go Vap Orphanage<\/a>.<\/p>\n

The first ‘Great Plan’ – which I’ve currently shelved!<\/strong><\/span>
\nMy 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.\u00a0The benefit of spending so much time in hospital is that you get to chat to all the medical staff at length about their backgrounds.\u00a0 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).\u00a0 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.\u00a0 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.\u00a0\u00a0\u00a0 However, training takes years, funding is short and facilities are in even shorter supply.\u00a0 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.\u00a0 Once a group has returned, the next can fly out.\u00a0 It sounds so simple, doesn’t it?\u00a0 And if it were that simple, it would have been set up already.\u00a0 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\u00a0 basis with no consistency.<\/p>\n

\"Another<\/a>
Another inspirational individual; Benjamin Warf and some of his patients in Uganda.<\/figcaption><\/figure>\n

I contacted Dr Benjamin Warf, who heads up the neurosurgeon training programme in Uganda and put my ideas to him.\u00a0 He liked them, said they were good – but that logistically the situation was very difficult.\u00a0 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.\u00a0 I contacted another neurosurgeon, Mr Ellenborgen.\u00a0 He said the same thing; great ideas, noble ideas; a logistical headache. \u00a0 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<\/strong> job.\u00a0 Too big to even know where to begin with it.\u00a0 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.\u00a0 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.\u00a0 I needed to start with smaller, simpler steps.\u00a0 So the Overseas Training Programme is on hold until I feel stronger to address it again – or until I have a ‘Eureka!’ moment.\u00a0 IT IS NOT<\/span> SCRAPPED THOUGH.\u00a0 I REPEAT, IT IS NOT<\/span> SCRAPPED. \u00a0<\/strong>I don’t like quitting; it’s simply on hold as I have now to get on with the plan I am <\/em>capable of doing: (Update: as of June 2013 this project idea was<\/span> scrapped under the advice of the neurosurgeon I am now working with!\u00a0 All for very good reasons.\u00a0 The shunt donation project is now what we’re focusing on).<\/strong><\/em><\/p>\n

The second ‘Great Plan’ – not so ‘great’ in terms of scale but equally great if it means saving childrens’ lives<\/strong><\/span>
\nThe second – more immediately ‘do-able’ plan is for shunt donation.\u00a0 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.\u00a0 Children are left with no options.\u00a0 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.\u00a0 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.\u00a0 Operation Shunt is on.<\/p>\n

You can read about how this project is now developing here.<\/a>
\n<\/span><\/strong><\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

If you’ve just jumped in and are wondering what this ‘F-List’ I keep banging on about is, you can read about that here. 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 […]<\/p>\n","protected":false},"author":2,"featured_media":159,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[7],"tags":[11,19,23,63,82,87,95,103,111],"class_list":["post-157","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-my-charity","tag-agent-orange","tag-brain","tag-bucket-list","tag-hydrocephalus","tag-neurosurgery","tag-orphanage","tag-queen-square","tag-shunt","tag-vietnam"],"jetpack_featured_media_url":"https:\/\/jordantheheadcase.com\/wp-content\/uploads\/2013\/04\/kim-nguyen-browne-1.jpg","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts\/157","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/comments?post=157"}],"version-history":[{"count":1,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts\/157\/revisions"}],"predecessor-version":[{"id":2314,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts\/157\/revisions\/2314"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/media\/159"}],"wp:attachment":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/media?parent=157"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/categories?post=157"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/tags?post=157"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}