Human Guinea Pig: Part 7 - How To Get Over Your Fear Of Needles

Holy lord! Who would have thought, when I agreed to go into hospital for all this testing, that the experience would prove to be such a rich vein of blog posts?

Anyway! This is the sixth part of the story about my overnight stay in the hospital's research department, having lots of tests to look at the effect my pituitary tumour is having on my body and metabolism. Here are links to: part one, part two, part three, parts four, five and six!

A Whole Lot of Blood Tests

After my GEM ventilated hood calorimetry test was over, and the strange astronaut hood was removed from my person, you might be imagining they'd let me have breakfast. If so, you are imagining wrong. Please stop.

No, it was time for my blood glucose testing! And so I was presented with this:

Yay, breakfast

No, it's not a refreshing beer: it's a pint of Lucozade. At nine in the morning. And I had to drink it all within five minutes.

Basically the idea is that, having eaten/drunk nothing but air for twelve hours, they present you with a massive sugary drink and then do a bunch of blood tests over the next two hours to see how well your body deals with it. I'll be interested to find out the results of this, as I'm pretty sure my body isn't great at coping with sugar; sometimes eating sugary things really noticeably raises my heartrate - and especially when I'm on my lanreotide injections, I have to try to be really careful about eating regularly, and carry around a packet of Starburst (or similar sugary hit) because occassionally I go hypoglycaemic at unexpected moments. Lanreotide messes around with your insulin and glucagon levels, meaning that it can confusingly cause both high and low blood sugar, and it sure is annoying.

I looked it up, and it turns out Lucozade was originally conceived as an Irish health drink and called Glucozade! Who knew! Between that and Guinness, it seems my ancestors had some peculiar ideas about what was "healthy". It also turns out that Lucozade contains 85g of sugar per 500ml, which is almost all of a woman's daily allowance. Holy crap! You can see why they chose it for my morning tipple.

While I was distracted trying to gulp down the hideous stuff, the sneaky nurses set up the trolley ready for my blood tests. Having finally finished all my Lucozade, I turned around to see this:

Oh, dear lord.

Yep. All those tubes were for me. I got to have twenty-three bloods taken in total - lucky me!

First they put an IV cannula into my arm - basically it's a giant needle that stays in your vein and they can attach tubes and things to so that they don't have to re-stab your arm every time they take another blood. They took about 16 of the bloods immediately, and then I had the rest over the next two hours. I still can't really bring myself to look at cannulas in my arm due to being a wuss, so one of the nurses very kindly bandaged it up for me.

Safely hidden away!

The nurses and my endocrinologist formed a sort of production line around my arm for the first sixteen, with one nurse preparing the tubes, Dr Olive taking the blood, and the other nurse stacking them up (some had to go straight into a bucket of ice; some had to be left to clot).

Once they've finished taking one lot of bloods via a cannula, the tube is flushed out with saline solution (i.e. they effectively inject saline into the tube). This clears the blood out of the tube, preventing it from clotting and blocking the tube in-between blood tests. Of course, then the next time they come to take blood, this means that they get half a tube of saline back before the blood starts coming through properly, which is of no use to anybody. Because of this, before taking further bloods, they take an extra tube which comes out as a mix of the saline & blood, then continue with the tests - and then sometimes (if you're having a lot of bloods taken, like me) they'll re-inject the blood and saline, to minimise blood loss.

I've never written the word "blood" so much in my life as I just did in that last paragraph, but I promise I'm not just trying to gross you out; there's an interesting fact coming up. Before re-injecting the blood & saline, I was asked if I was ok with it. I was very much ok with it, because sometimes having lots of blood taken gives me a Funny Turn (in this case I was fine, probably thanks to the pint of Lucozade) and thus I like to hang on to the stuff. Turns out they always have to ask before re-injecting the blood, in case you're a Jehovah's Witness.

I have long been aware that Jehovah's Witnesses are against blood transfusions, but I'd always assumed that this was due to believing that it was wrong to have someone else's blood put into your body; I hadn't appreciated that in fact the problem is with any blood that has left the body at all, even your own. According to Wikipedia, for Jehovah's Witnesses "Blood represents life and is sacred to God. It is reserved for only one special use, the atonement for sins. When a Christian abstains from blood, they are in effect expressing faith that only the shed blood of Jesus Christ can truly redeem them and save their life".

My Lucozade & Blood Tests Experience:

Hassle: 4/5
Fun: 1/5 (It would have been a zero, but I learned an interesting fact!)
Weirdness: 2/5
Results: 2/5
Total Score: 9/20

A Lesson From My Former Landlady: Part 2

I know what you're all thinking after yesterday's post. Maybe I was just a genuinely awful tenant and this poor innocent landlady was understandably desperate to get rid of me. Maybe that £65 just barely covered the emotional trauma of having to live with me. Maybe my mere presence in a house creates the kind of dark cloud of horror and despair that nothing but years of intensive therapy can lift.

Well, I admit I wasn't perfect. Due to all my dance classes, I had a very unpredictable pattern of kitchen useage, and I did once manage to lock my boyfriend in the house and trap him there, because I am apparently incapable of understanding how keys work. I wasn't allowed to hoover my room in case it scratched the floor, so I only swept the floor occassionally. Sometimes I would move bags that were left in the middle of the hallway, so that I could get by. I admittedly never cleaned the windows. And I did once keep a friendship cake on the sideboard in the kitchen for almost two weeks - although I feel that offence should be mitigated by the fact that I gave June and her kids several of the resultant cupcakes.

On the other hand, here is a small taster of what it was like living with June:

1. She once went on holiday without warning me at all in advance; I just arrived home to find an email saying she wouldn't be back for a week. This would not have been a problem, except she turned off the heating before leaving and I had no idea how to turn it on, so it was freezing, and she locked away the wireless internet box in a room with no key, meaning that whenever I had problems getting internet access, which happened every now and again, I was unable to reset the wireless and had to just wait until it fixed itself, which could be hours. Oh, and she also left her kid's hamster in the house with no-one to look after it but me. I emailed her back about the above issues and she completely ignored it, even when I texted her as well; I didn't call because I didn't know what country she was in.
Fortunately, after four days, just at the point when the hamster's food was starting to run low and I was starting to think I would have to find something for it to eat, her ex husband rocked up at half nine at night to pick it up, with no warning.
2. The whole house was permanently a huge mess (except for my room in the roof… my room was lovely, that's the only reason I put up with it), particularly the kitchen, where plates of congealed food could lie in state for days. At one point, some mouldy bananas were left hanging up in the kitchen for two weeks. That's two weeks after they'd already gone mouldy.

3. When I moved into my room, one of the curtain fittings was broken and falling off the wall. Despite raising it more than once, it was never fixed. Nor was the door to my kitchen cupboard fixed in the months after one of its hinges detached. Apparently June - a fully grown woman with children of her own - was waiting for her elderly parents to come and fix them.
She also got her parents to come and stay at the house for a week while she went on holiday, so that they could do her gardening. They came and worked in the garden and swept her paths and fixed her fence, and they didn't even see her or their grandchildren. This didn't affect me in any way, I just thought it was a pretty crappy thing for her to do.

4. There was a mysterious and horrible smell coming from the downstairs drains for a couple of months after I moved in. After talking to her about it several times, she finally booked a plumber, without mentioning this to me until two days beforehand. She managed to book him on my day off, when I had been planning a lie in and general lazy day, and informed me that I would need to vacate my room that morning by eight o'clock - earlier than I would usually leave for work. I said that I had booked leave and had been planning a lie in and would have appreciated it if she had checked with me that it would be ok. Her response? "Oh well, it's too late, he's booked now".

5. She kept her Christmas tree up and fully decorated until at least the end of March, when I left. Not really a problem as such, just Very Weird.

I could go on, but I'm bored now. In any case, that's got to be enough for you to see that she wasn't the easiest person to live with. However, I have become a much more patient person in the last few years (except when I'm walking behind slow people. OUT OF MY WAY, SLUGGARDS!)* and I do at least try to think the best of people. Despite all the above, I liked my room, I thought I got on fine with June, I kept myself out of the way and I always made sure I tidied up after myself. Even though my mum and boyfriend** clearly (and accurately) marked her out as a Bit Of A Weirdo after meeting her just once or twice, I really did make the effort. So for her to effectively turn on me for the sake of a measly £65 felt pretty horrible, given the amount of effort and patience I had put into maintaining a good relationship with her.

Even after she had her big shouting fit at me and docked her pound of flesh from my deposit, I was naive enough to assume that would be that. I had previously provided her with my new address so she could forward any post; I was pretty organised with getting my address updated with various organisations that write to me, but I've had problems in the past where I've called the hospital and given them a new address, only for them to fail to change their records and continue sending stuff to my old address, so I wanted to be safe. I assumed everything was fine.

This week, I suddenly realised I had failed to provide the professional body that I'm a member of with my new address. They don't usually send me much, but I emailed them anyway. I was impressed when, two days later, they sent me a magazine to my new address. Until I looked at it and realised that it had previously been sent to my old address at June's house. Instead of forwarding it to the address I had supplied her with, she had marked it "Not known at this address, return to sender." Obviously the professional body had received it back and been waiting to get my new address so they could re-send it.

But what a horribly petty, vindictive thing for June to do. She knows my new address perfectly well; writing it on the envelope before sticking it back in the mail would take no more effort than writing "return to sender" before sticking it back in the mail. Fortunately she's chosen to do that with a magazine that's not important. But what if it had been medical information sent to me by the hospital? It's not going to come in an envelope marked "important medical info for Emer, please don't dick around with this".

I had decided to put my previous encounter with June to the back of my mind, but this upset me all over again - because now I'm worried that the hospital could have sent me a letter which I haven't received thanks to her childish behaviour. I have no idea why she would choose to behave towards me in this way. Presumably it hasn't even occurred to her that messing around with someone's mail could have serious consequences - or else it has occurred to her, and she really doesn't care. Maybe that was the only bit of mail that she's done this with, and she just wanted to make some kind of point - but I can't know that for sure.

I'm hoping that, as I spoke to my endocrinologist yesterday, he would have seen any problems with my address on the hospital system and mentioned it, and I will call and check that they have the correct address for me now. But I don't know what to do about June. Part of me really doesn't want to let this go; I think she should be made aware of how serious her actions could be. But equally, I have no desire to have any contact with her ever again. I'm worried if I email or write to her, I might just make things worse - but I do think that telling her about my illness might give her a bit of a wake-up call regarding her behaviour.

Any suggestions?

__________________________________________________
* Is sluggard actually a word? It should be. Answers on a postcard, please.

** Some of the few people to have met her - for the most part I didn't invite people to the house because I was embarassed that the kitchen etc. was so horrible

Top Tips for People About to Have Pituitary Surgery

Before going into hospital for your transsphenoidal pituitary surgery, you will be anxious. You will have questions. Many of them will be answered on legitimate medical sites elsewhere on the internet, so instead of regurgitating the same old advice ("Don't sneeze after surgery or your brain will shoot out of your nose", "Warning: after they've drilled through your head, it may be a little sore"), I have decided I will go down a different route, and write down the more obscure things that I wish I'd known before heading into hospital.

Consequently, I present my top tips for people about to have pituitary surgery:

1. Shave your inside elbows.
"She's gone mad," I hear you cry. "She's raving. It was probably the brain surgery that did it."
In fact, this is an entirely logical step because of all the blood tests you'll undergo after your pituitary surgery; you're basically going to be a human pincushion for a couple of days as the doctors seek to keep a very close watch on various hormone levels. This means that the post-blood-test strip of tape and cotton wool that the phlebotomist sticks over your inside elbow is going to get ripped off repeatedly, and then stuck back on. And then ripped off again, along with much of your arm hair. After the sixth time this happens in one day, you'll be wishing you looked like this.

2. Drink enough.
If this seems obvious to you, then presumably you're a normal person who gets thirsty when you haven't drunk sufficient amounts of water to keep yourself hydrated. However, I am an odd sort of person and I only really get thirsty when it's hot or I've done exercise. If neither of those conditions have been met then I can go for hours and hours without drinking and not even notice; even back when I was a teeny child, my mum would tell me off for not drinking enough.
Compounded with the fact that I don't like water, this was slightly problematic in hospital. Because of the risk of pituitary surgery inducing diabetes insipidus, your fluid balance is monitored carefully and if you're not drinking enough to keep yourself hydrated, they will put you on a drip. This is rubbish. Therefore if you don't like water, keep a supply of tastier drinks at hand. And by "tastier drinks", I mean RIBENA.

3. Always eat the custard first.
Hospital food gets a bad rep. The food at my hospital was pretty tasty really, and there was a good selection. But for some obscure reason the dessert was often served before the main. If you waited for your main meal to rock up before eating, your custard would congeal disconcertingly by the time you got to it.
So remember: you've just had brain surgery. Screw societal norms regarding the "correct" order in which to eat sweet or savory comestibles!

4. Make your visitors play musical chairs.
Again, this may initially seem nonsensical. But I was fortunate enough to have a fair few visitors in hospital (thank you guys! <3), which was lovely. However, for the most part they sat in the same chair on the left-hand side of my bed, and consequently by the end of my stay in hospital I had done my neck in from continually turning my head to the left. It was pretty painful and entirely my own fault. Make them alternate sides.

5. Get wheeled out in a wheelchair.
Because a) you'll be feeling rubbish and won't want to walk, and b) it's fun!

6. Steroids + morphine = surprisingly fun.
After waking up from surgery, initially I felt rubbish. The nurse at hand quickly gave me some morphine. By the time I was properly awake, I was pain-free, wired, and weirdly delighted that the nurse had the same first name as my mum. They took me out of the post-surgical care room and up to the main neurosurgical ward, and about half an hour after I woke up I was already texting various members of my friends and family and talking nineteen to the dozen about how unusually chirpy I felt.

7. Play your "brain surgery" card.
I regret not doing this more, in retrospect. I have no doubt that there are hours of fun to be had in pretending not to recognise household objects, friends, family, political systems and/or branches of philosophy.
I remember speaking to one friend a few weeks after my brain surgery, and I mentioned that I was always forgetting where I'd left my books. She gave me a sorrowful look and whispered, "Is that because of the surgery?"
It was disappointing to have to confess to her that no, I have in fact always been that stupid.

8. Get a free pill slicer. They are awesome.
After pituitary surgery you'll be put on steroid replacement medication in case the neurosurgeon accidentally removed your body's ability to make its own steroid hormone when required. Said pills can be broken into different-sized chunks so you can take, for example, a whole dose in the morning, half a pill at lunch, and the other half in the early afternoon. When I left hospital, I obviously looked too pathetic even to break a tiny pill in two, because they provided me with a pill slicer. You put the pill in, shut the lid, and SHAZAM! A razorblade hidden inside will slice that bad boy in twain.

I managed to lose my pill slicer after a couple of months, and I still haven't quite got over it.

IMFW: Nodding Disease

For today's Interesting Medical Fact of the Week, we're going to get a little bit Agatha Christie. I love Agatha Christie, because a) I love mysteries and b) I'm an old granny at heart. But in terms of mysterious illnesses, this one takes the biscuit.

So-called nodding disease (or nodding syndrome) was first described in the mountains of Tanzania in the 1960s. Since then, it's spread to areas in south Sudan and northern Uganda. It's an extremely serious progressive disease which only affects children, and it's almost always fatal. There is no cure. And no-one is even sure what causes the illness.

The symptoms of nodding disease include complete and permanent stunting of growth, including development in the brain, which leads to mental retardation. The name of the illness comes from the characteristic seizures suffered by affected individuals, which cause their heads to nod rapidly; the only treatment currently available for nodding syndrome is epilepsy drugs which can help to control these seizures. Extra weird is the fact that these seizures seem to happen most commonly when the child begins eating or feels cold. Children become severely malnourished because they are frequently rendered unable to eat. Many children with nodding disease actually die from falls or accidents like drowning or burning, which they're at higher risk of because of their mental impairment.

At the moment, the hypothesis that seems most likely to explain this disease suggests that it may be linked to river blindness (onchocerciasis), an illness caused by a kind of parasitic worm which is transmitted to humans through the bite of the black fly. Cases of nodding disease are concentrated in areas where there are high levels of infection with the river blindness parasite and it seems there may be a link, although no-one's yet worked out what it is. There may also be a link with low serum concentration of the blood.

There is a little bit of good news. The mysterious illness has attracted some international attention, and this week Uganda opened its first treatment centres specifically for children with nodding disease. At the moment, though, the best they can aim for is to control the illness's symptoms.

IMFW: "Excited Delirium"?

Today's Interesting Medical Fact of the week is about a medical condition that may or may not, in fact, exist. Wikipedia defines "excited delirium" as "a condition that manifests as a combination of delirium, psychomotor agitation, anxiety, hallucinations, speech disturbances, disorientation, violent and bizarre behavior, insensitivity to pain, elevated body temperature, and superhuman strength." Never heard of it? Neither had I.

Excited delirium is not  recognised as a cause of death by the Department of Health or the World Heath Organisation. It has become an extremely controversial topic in the UK recently, due to the death of Jacob Michael, a 25 year old man who died last year in police custody. The Home Office pathologist found that he died of excited delirium; Michael's parents disagree, arguing that the pathologist ignored the effects of heavy police restraint on their son.

Excited delirium has been cited as a cause of death in a number of death-in-custody cases in the UK, and more in the US; it started turning up in pathology reports in the 1980s. Many of the people who are reported to have died of excited delirium have cocaine or other drugs in their system, and it's been variously suggested that their death is due to excessive adrenaline or organ failure due to a massive spike in body temperature, with the risk of death being increased by pre-existing conditions.  But  Eric Balaban of the American Civil Liberties Union suggested that the diagnosis of excited delirium is used "as a means of white-washing what may be excessive use of force and inappropriate use of control techniques by officers during an arrest", with most reported cases of the disorder found in people who have died in custody.

There may be an explanation for this; Dr Vincent Di Maio, a former chief medical examiner in Texas, suggested that it is the very act of resisting or fighting with police which tips sufferers over the edge, and that police then wrongly get the blame. Some doctors have said that deaths from police brutality are clearly distinguishable from those due to excited delirium, with the physical marks of brutality obvious; others have accused taser manufacturers of using the diagnosis to explain away the deaths of people who have been hit with tasers. It's pretty much a minefield of conflicting opinions.

But Balaban argues that the symptoms of excited delirium are simply the symptoms of mental illness, possibly exacerbated by drug use; and this article looks at other medical conditions which can look like excited delirium, listing delirium tremens (alcohol withdrawal), hyperthermia (severe overheating), severe low blood sugar in diabetes, traumatic brain injury, viral encephalitis and thyroid storm (massive hyperthyroidism often caused by very high stress). The article does not mention epilepsy, but in some cases epileptic fits can lead sufferers to become extremely disoriented and confused, and there are probably several other disorders which could give rise to symptoms similar to those of "excited delirium".

It's an interesting debate to follow, although as someone with little knowledge of either medicine or police work, I'm hardly qualified to draw any conclusions. There's also the issue that the question of excited delirium is twofold; some question whether it is a medical condition at all, whereas others merely question whether it's a medical condition which in itself would actually lead to death. I will follow the debate with interest.

IMFW: Retrospective Justification

When I was a child, I hated sprouts.

No, wait - let me rephrase that:

I hate sprouts.

I have always hated them. I intend to continue hating them until I'm so old that my tastebuds have shrivelled up entirely beyond use - and after that I will still refuse to eat them, on principle. As a child, I was often served a Token Brussels Sprout at Sunday Dinner, which I had to eat if I wanted to get any pudding. And, as I always wanted pudding, I used to attempt to chop the sprout into as few pieces as possible and then swallow them whole, like a self-loathing vegan snake.

For years, I suffered this horror almost every week and was told off for my fussy eating habits. But now, it has been revealed that the hatred of brussels sprouts is, in fact, genetic. Or at least, probably genetic. Those people who have this gene can taste the bitter and hideous taste of a chemical called phenylthiocarbamide, which is extremely similar to a chemical found in brassicas, like brussels sprouts. And cabbage, broccoli, cauliflower... pretty much all the vegetables I and so many other sensible people hate.

Now, I've seen different theories suggested for why some people like sprouts and others can't stand them - but this is definitely my favourite. Because it means that all children everywhere, when faced with a plate of sprouts, can now scowl up at their parents and say: it's your fault I don't like them.

So what the hell is actually wrong with you, anyway?

I have long since realised that different people have different levels of interest in what the hell is actually wrong with me anyway, but unfortunately everyone is forced to ask the question in the same way, because Victorian standards of etiquette insist that adding the phrase "Seriously, though, I don't want some really long explanation" after the phrase "So what is your illness?" is rude. Those crazy Victorians! It's political correctness gone mad.

But I am totally fine with that and equally well aware that, whilst phrases such as "cystic degeneration" and "scooping the tumour out through your nose like in Ancient Egypt" undoubtedly have their place, they may result in queasiness among the populace. Especially when sprung on people unexpectedly.

To this end, I have decided to create a variety of possible explanations for what's wrong with me, and you can select the one that appears most suited to your needs.

The Short Explanation:
There's a gland in your head called the pituitary gland. Mine has a tumour on it.

The Long Explanation:
There's a gland just under your brain called the pituitary gland (see above for a quick explanation) which makes a whole bunch of hormones. My pituitary has developed a tumour known as a pituitary adenoma (see the About section for more details). Fortunately the tumour is benign, but it makes a hormone called Thyroid Stimulating Hormone (TSH), which results in me having too much thyroid hormone; that creates all kinds of exciting symptoms like a superfast heartrate and the shakes.*

The Explanation In German:
Die Hypophyse ist eine endokrine Drüse, die unter dem Hirn liegt. Ich habe einen hypophysären Tumor, der Schilddrüsenhormon macht; also habe ich Symptome von Hyperthyreoidismus.

Leider ist mein Deutsch sehr schlecht, also vielleicht ergibt die vorhergehenden Absätze keinen Sinn...

The Explanation In Rhyme:
The pituitary gland
is like a small grain of sand
(except it's the size of a pea).
It sits in your head,
well-behaved (or, instead,
it might swell up exponentially).

My pituitary gland
is a meanie; he's banned
from attending well-thought-of events.
So now he just chooses
to sulk, and he oozes
hormones, with the worst of intents.


I am happy to create further explanations to suit your explanatory needs, although they may not all be entirely explicatory or, indeed, explicable.


* Incidentally, if I've ever been mean/stupid/lazy/exhibited any other undesirable character traits in your presence, it's probably also because of the tumour. I'm actually a really great person.**

** This may or may not be entirely or indeed at all true >.>