Monthly Archives:

May 2013

Shunt Donation Project – Three shunts = three lives (and another forty are on the way!!)

May 24, 2013

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 that here.

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??

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!!

Shunt Donation Project – latest update (and it’s all good)

May 21, 2013

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 that here.

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.

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.

Living with hydrocephalus: How to have a nice recovery after a nasty surgery (with a little help from your friends)

May 7, 2013

I found myself thinking about recovering from surgery this week as my landlord (who lives in the property right next to mine) had a fall and ended up in hospital (he’d had a heart attack at the end of last year and a surgery to insert a stent).  He said he was still finding things a little tiring since his surgery and didn’t know why. I reminded him that he’d been through a heck of a lot (he’s 78) and it would take time to get all his puff back and to just take it easy so as not to overly exert himself.  As I said this to him, I could literally feel the big alter-me rising up like a large inflatable blimp from my being, floating above my head, pointing at me and shouting ‘hypocrite!’ in a big boomy voice.  Me giving advice on recovering and taking things easy is like a heavy smoker advising another smoker on what they should be doing to quit.  I have met many, many fellow patients in my months spent on the ward and out of all of them I have never, ever met anyone as impatient as me when it comes to recovery. But I have got better (well, I think!) recently so I thought it might be wise to share recovery thoughts/experiences as it is something that lots of patients who are just out of surgery ask me about.  Recovery is hugely important, both physically and mentally.  It gives you a sense of moving forwards and leaving the bad stuff behind you.  It’s also the bit that people can pay little attention to; often all the focus is on the surgery itself.  The surgery is important of course, but that’s down to someone else; getting over it is up to you.
When a shunt is throwing a bit of a hissy fit and playing up, it can feel as though the majority of one’s life is spent either in hospital or in recovery.  Because of where the shunt is, major surgery can be a rather frequent occurrence and obviously the recovery time for this isn’t exactly a couple of weeks.  This requires a lot of patience when it’s a fairy regular event.  I am not a patient patient.  I am often told (by my parents, friends, surgeons and numerous other healthcare professionals) to rest up and get better following a surgery or even if I’m just having a few bad days.  This is because those who know me well know that I have tendency to run before I can walk when it comes to recovery.  I just can’t stand lying in bed!  Even when I’ve been really ill, so much so that just turning my head a fraction of an inch causes relentless pounding in my head and the room to spin on its axis, I visualise being up, well, back at work and socialising again.  I don’t think this is any bad thing; in fact, I swear it helps me recover much faster than many of my fellow hospital wardians if past stays are anything to go by.  I remember Mr Watkins once coming round to see me on the evening of the day he’d operated on me to see how I was getting along.  He stopped at the foot of my bed and started to laugh.  I was sitting up in bed, sipping a cup of tea and chatting to my parents.  I stopped mid-sip and asked him why he was laughing.  His registrars were also laughing; at me.  This might have made me paranoid had I now known that they’re all lovely people and would never stand there and purposefully laugh at a patient.  But obviously something had tickled them.  He explained what it was; ‘You’re supposed to look worse immediately after a major brain surgery,  not better!  And you’re certainly not supposed to be sitting up in bed drinking tea and chatting’.
‘Ah.  Should I be lying down looking like a ghost and unable to move then?’.
Not quite my style.  I’ve always been a bit of a nightmare for the post-surgical nurses.  The very first surgery I had, when my shunt was inserted, surgery I sat up all night after being returned to the ward from the recovery room as I genuinely wasn’t sleepy and was fascinated by what had just happened; I’d never had a surgery before, not even my tonsils out and here I was having just had brain surgery!  I was seriously impressed with myself (this sense of self-amazement was helped along with a lot of morphine).  I rocked!  So I sat up all night long to chat to the not-really-busy-with-seriously-ill-patients-at-all nurses, all of whom repeatedly told me (very kindly) to sleep and get some rest.  Every single one of the eighteen surgeries I’ve had since has been the same.  As soon as I wake up, I want to get up.  One time I managed to get off my bed only five minutes after having been brought back to the ward and walk – not take the lift – five floors down to the basement cafe because I fancied a cup of tea.  This was also after too much morphine (morphine is dangerous for me; it makes me vomit constantly for hours and also makes me think I am absolutely fine and can go for a walk around the hospital – the combination of these two factors is, naturally, a disaster).  My greatly confused nurse who had just brought me back from recovery returned from getting the blood pressure machine to take my obs to find my bed completely empty.  She checked the loo; nothing.  She checked the whole ward; nothing.  The alarm was raised and I was found eventually in the basement after reaching the cafe and suddenly realising that I felt very sick and very weak.  I may have been very ill but I got a real telling-off (and quite rightly so).  As a precaution (punishment, really) I was placed right next to the nurses desk and the cot-bars of my bed were put up permanently to stop me escaping again.  Even though visualising being well again is, I think, a good thing, going for a mini-trek when you’re one hour out of surgery is not recommended.  They don’t give me as much morphine immediately post-op any more which helps matters a lot; the last few surgeries I’ve been very good when back on the ward and have stayed put until steady on my feet.
It’s not just in hospital where taking it easy is important; getting back home and back to your normal surroundings can be completely confusing.  You’re back in your own bed (yay!), friends are popping round to see how you are, you can flop on the sofa and watch a frankly boggling array of mind-numbing daytime television; recovery at home should be easy!  Of course it’s a little more complicated than that.  After spending an average of a month on the ward per stay, I find that my body and mind have been programmed to hospital life; obs every couple of hours, someone bringing you tea every couple of hours, ready-cooked meals three time a day and your bed made for you each morning.  I live alone by choice but I usually have my Mum stay with me the first couple of days following a biggie surgery; after smaller ones I’m fine on my own.  So she helps me with meals/tea/making the bed whilst she’s there.  After that, I get my own tea.  That doesn’t sound like a big deal but it’s surprisingly exhausting to do after someone’s drilled your head, rummaged around inside your brain, stapled you back together and sent you home.  Here’s where planning is key.  I learned this after my fourth recovery when I’d made the exact same mistakes during the previous three.  I devised a ten-point plan which I shall share here (little plans warrant bullet points; it looks more like a plan then).

  • Don’t do ANYTHING but rest on your first day home; get others to make your tea, your dinner and your bed.  Take your meds.  Sleep.  You’ll need it.
  • Day 2; get whoever is able to help you to help sort your meals for the week out.  I find I crave fresh food when I’m out of hospital (Steamplicity Hospital Meals are actually not that bad – but they’re also not that fresh and you can’t beat heaps of vegetables to feel better quickly).  Get your help to go and buy ingredients to make something easy to freeze and re-heat.  I usually make a massive cauldron of vegetable chilli/curry/casserole, freeze the lot into individual portions and then all I need to do when my help has returned home and I’m too knackered to cook is bung it in the microwave.  Hey presto!  Fresh food every night!  I don’t even get bored eating the same thing for a week – I’m usually too knackered to worry about that.  Failing that, microwave meals, pasta (the sort that cooks in 4 mins) and sauce and jacket potatoes (minutes in the microwave) are all good ideas.
  • Get dressed.  Sitting around in your PJ’s is fine in hospital, but it can prolong your recovery once home.  If you really, really cannot face getting dressed then of course, don’t do it.  But if you think you can manage it, make the effort.  Lying around in old jammies all day long does not make you feel you’re even near recovering; let’s face it, all you really feel like doing when you’re wearing jammies at two in the afternoon is slumping on the sofa watching ‘Doctors’.
  • Try and make your bed.  Mainly for similar reasons to the point above.  You don’t have to do the whole sheet-change thing but just plumping the pillows, pulling the duvet in place after airing the bed for a bit and opening the bedroom window will make you feel less inclined to wallow in it all day long.  The longer  we lie in bed, the harder it can be to want to leave it.  Unless you’re me it seems.  In which case lying in for even five minutes is pure torture.
  • Embrace the internet.  Seriously.  When you’re too exhausted to even have visitors around, Facebook can become a lifeline.  You can chat to all your friends, soak up the get-well wishes and keep up-to-date with what everyone is up to.  It makes you feel included even though you’re physically – for the time being – not.
  • Be selfish.  Don’t be afraid to refuse offers of visits if you’re just not feeling up to it.  This is so important!  Friends and family who may not have seen you for ages will be keen to catch up but just talking can wear you out and give you headaches.  If you need to be alone, be alone. Explain why to those concerned; if they are good friends they will totally understand and look forward to seeing you when you’re actually feeling as up to it as they are.
  • Plan little treats.  Get a supportive friend to drive you to the local park for half an hour so you can sit in the sunshine (she said optimistically, living in the UK).  It makes the world of difference to get a change of scene and some fresh air.  It literally lifts the spirits.
  • Laugh.
    My good friend Chris cheering me up in hospital by standing on his head.  Don't try this at home.  Especially just after brain surgery.

    My good friend Chris cheering me up in hospital by standing on his head. Don’t try this at home. Especially just after brain surgery.

    Not too hard or it’ll kill your head (trust me) but it isn’t called the ‘best medicine’ for nothing.  As soon as you’re able to, get your friends over and laugh.

  • Speaking of friends, really make use of them.  They’ll want to help you, having felt helpless all the time you’ve been ill.  Accept their offers of cooking you dinner/taking you for a walk/bringing a film over for the evening if you feel up to it.  Serious illness can really indicate who are your true friends and sometimes (and it’s no bad thing), indicate those who are not so hot (ah, the promises of ‘I’ll come and visit you!  I’ll help you with anything you need; just say!’ followed by realities of no contact whatsoever for months – we’ve all been there).
  • Don’t forget that the bad, painful days will pass.  This is just recovery and sometimes it sucks.  But it will soon be behind you.  Even if it feels as though you’ll be this weak/in this much pain forever, you won’t.

These points help make the monotony of recovery a little more bearable.   These days, I’m more patient with my body as well.  It’s been through a lot; rushing it isn’t really fair as it’s trying its best, after all.  Of course, you’ll find your own way for coping and getting through it all.  You’ll find whatever works for you.  Whether you’ll have a friend willing to stand on his head in public places to make you laugh is a different matter but if you don’t….I’m willing to lend you mine.

Shunt Donation Project – I have shunts!!!!

May 2, 2013

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 that here.

Yessir, this is a good day.  A happy day.  This morning I received an email from Conor Mallucci at Alderhey Children’s Hospital (Mr Mallucci is the first neurosurgeon I contacted in this project) saying he had just spoken to a lady at Codman UK and that they had shunts for me.  He said that she would be very happy to speak to me directly and included her contact details.  So I called her immediately (Loiusa Doherty; very helpful, very friendly, very keen to assist).  She said she has a rare situation of a hospital having ordered too many shunts and that there are forty she is due to collect next week which I am welcome to have.  They are ‘Bactiseal’ shunts, which mean that they release antibiotics once implanted in the child for the first crucial month when infection rates are at their highest, which will be imperative in these countries where infection plays such a large and troublesome role in post-operative complications.  Needless to say, I couldn’t thank her nor Mr Mallucci enough.  I was bordering on sounding gushy so I restrained myself after thanking each about three times.  To Codman, it’s just some shunts they won’t use.  To me, it’s a child being saved from a horrible death with every donated shunt.  Now I just need to arrange collecting them from Codman the week after next and after that I am going to meet with Kim Nguyen Browne from the Vietnam Volunteer Network to personally give her some of the shunts.  The others I shall be sending to Mr Alrbright at BethanyKids in Kijabe.  I’ve had to work out how many go give each facility in relation to how many children they have which are in need of the shunts which has been harder to do but judging from what both Kim and Mr Albright have informed me about the situations of each facility, I think I shall be sending fifteen shunts to Go Vap Orphanage in Vietnam and the remaining twenty-five to Kijabe in Kenya.  I shall update more when I’ve finalised the details; I just wanted to quickly share the good news!