Monday, December 25
I have a duck roasting in the oven right now — yes, at two-fifteen in the morning — when else would I get the chance? So I'll take some cold roast duck round to the hospital tomorrow, and my mother-in-law will bring some turkey and vegetables, and it may all be pointless because Vic's got no appetite for food these days.
But you know what? It'll still be a good Christmas. The Christmases I've spent with Vic have been the best of my life, for the simple reason that she is who she is. And now there's Daisy, too, who started out fantastic and gets better every day. We'll have Christmas in a crap venue under crap circumstances, but it'll still be far better than a stressless and worry-free Christmas with anyone else.
Merry Christmas to the lot of you.
Tuesday, December 19
I'll try to keep this one concise, because my patience is thin.
Her doctors are monitoring Vic's INR, a measure of blood thinness. When it falls to 1.5, they will perform the lung-draining procedure. (It's falling because they've taken her off Warfarin.) Her consultant told her last Friday that she would be taken off Clexane 24 hours prior to the procedure, as to be on Clexane during the procedure would be rather dangerous. This much is obvious: blood-thinner plus surgical procedure equals disaster.
Vic's INR was 1.7 today, so her consultant reckons he'll probably perform the procedure tomorrow. Except that he then forgot to change her prescription, so the ward nurses still gave her the giant Clexane dose tonight. Vic did query it, and they checked with the duty SHO (the one doctor in the hospital after 5pm), whose response was not to worry, it'd probably be OK. Reassuring.
So, tomorrow, either they're going to realise they've screwed up and postpone the procedure by a day, or they're going to try to go ahead with it regardless and Vic's going to have to refuse to allow it.
This will be the second time that this hospital have unexpectedly had to postpone an operation on Vic due to their own fuck-up.
Not only have the doctors destroyed our faith in them. I and the rest of Vic's family are very pissed off that they've also destroyed our ability to reassure her. We can no longer believably tell her that it's all going to be all right or that she's going to be OK, because we've told her that before and, every time, have been proven wrong. My own credibility with my wife has been undermined, because I was foolish enough to listen to her doctors and to believe that they had a clue what they were talking about.
I doubt she'll be out for Christmas. Having been mistakenly discharged too early three times now, she doesn't even want to be out for Christmas. She simply doesn't trust them not to send her home while she's still getting worse. And neither do I.
Monday, December 18
Now, fair enough that there can be delays if you just turn up at A&E. But she didn't. She was sent to the hospital by her GP, and the pulmonory consultant said he was expecting her. Yet still.
Anyway, she didn't keep that bed for long. She's supposed to have a private room so that Daisy can visit her — Daisy, of course, can't hang around on a ward full of infections. But someone else needed the private room, so they shunted Vic out onto the main ward. Not only did this mean that she couldn't see her baby daughter, but also... well, bloody hell. Gary said the other day that, if he didn't know me, he'd swear I was making half this stuff up. I barely believe this one myself, and I was there.
They put Vic in the next bed from a woman due to have the same procedure as she is — having liquid drained out of her lungs, that is. And then they did it. Vic, her sister, and I sat there and listened to a doctor performing the lung-draining procedure on an old woman about six feet away, with a thin curtain hiding the view.
The sheer stupidity of this astounds me. Making sure that this never happens should be the most bog-standard of basic procedures. What if it goes wrong? What if the patient cries out in pain? What if they die, even if for unrelated reasons? How can you then go and perform the procedure on the next patient, who sat there and heard it all go wrong the last time?
These days, doctors are legally bound to tell you the risks and the worst-case scenario before doing anything to you. For understandable reasons, Vic is not comforted by reassurances that these worst-case scenarios are extremely rare, because, with the sole exception that she was lucky enough to have blood clots travel to her lungs instead of her heart, the worst-case scenarios keep happening to her. What should happen is that the doctor tells her the risks immediately prior to performing the procedure, giving her minimal time to spend dreading the worst. Instead, the doctor effectively told her all the risks on Saturday — or he told another patient while standing so close that we could only have avoided overhearing by rehearsing thrash metal — giving Vic at least two days, maybe three, to spend panicking. Nice one.
"Hmm," I thought, "a denial-of-service attack? Against Haloscan? Why?" Sure enough, Haloscan went down a little while later, for a few minutes. It seemed like a lot of effort to bring down a site that merely provides a free commenting service to anyone who wants it, and for such a short time. It's not as if they're poltiical. It did rather look like the attackers had put themselves to far more inconvenience than they'd managed to cause their attackee.
Then over the weekend I got an email from WatchingAmerica.com to say that their site had been taken down by a major DoS attack, had been down for two-and-a-half days, that other sites were affected, and that lots of engineers were working on stopping the attack. Gosh. Their site's up again now, so I suppose the excitement's over.
So it looks like Haloscan weren't the target; I was, along with a bunch of other (presumably) dangerous right-wing neocon warmongering etceteras. I had no idea my little old blog was such a threat. Cool.
Of course, my host's servers were affected hardly at all, as the attack concentrated on posting comments, and my comments, like so many other people's, are hosted externally. Great for me, a bugger for Haloscan, and really bloody stupid of the attackers.
Friday, December 15
The lack of record-keeping is insane. Every time Vic goes into hospital, she needs to answer a load of bloody stupid questions, such as "Are you diabetic?" "Do you have any children?" All fair questions the first time you go in, but not after that. In fact, at one point, Vic was transferred from one ward to another within the same hospital, and had to go through the whole rigmarole again, speakign to people who were clearly totally unaware of her medical history, even those bits of it that had happened that day in the same building. As it happens, Vic is extremely knowledgeable about her own health matters and can not only answer the questions but can explain the answers. But I bet a lot of people don't even remember every aspect of their own medical history, let alone understand it all — do you have an IGA deficiency? Or is it, perhaps, a GIA deficiency? And what is it? — those people, presumably, get worse care in hospitals. And then there are people who are senile, or insane, or unconscious, or who don't speak English. In a sane world, all you'd need to tell the hospital staff is your name and address and they'd pull up your details on screen. In fact, we've become so used to that from every other organization on the planet that it just seems absurdly archaic for it not to happen. Not only have the NHS not entered the Computer Age, but they're not even comfortable yet in the Getting-stuff-out-of-a-filing-cabinet Age. Amazing.
Another thing about being transferred from one ward to another was that Vic was transferred to the medical assessment ward. The medical assessment ward is an extension of A&E (note for American readers: "A&E" is British for "the ER"), where new arrivals to the hospital are assessed and then kept until a bed becomes free in the part of the hospital appropriate to their condition. In other words, it is supposed to be a route into the hospital. Vic was already in the hospital, in a room off a ward. In order to transfer her to a different part of the hospital, they took her out of the bed she was in and put her into the medical assessment ward until a bed became free. This is insane.
There appears not even to be a proper way for a GP to send one of their patients to hospital, other than sending them through A&E. This has happened to Vic twice now. It is a total waste of patients' time. Even when patients are in serious danger, their time is still wasted in this way. It was possible just a few years ago for a GP to get a hospital bed for one of their patients. That mechanism has been removed, deliberately, for reasons other than patients' best interests.
The A&E doctor we saw this morning said that it is not at all surprising that Vic has liquid in her lungs, as she has recently had two of the most common causes of liquid in the lungs. In that case, why the hell was no-one looking out for it? Her GP is furious: he notes that she was sent home to recover but that, without further treatment, there was no hope that she ever would. But no-one appears to have been aware even of the possibility of that.
We've been looking into going private, unsurprisingly, and have run into an annoyance. Vic's consultant said that, to get admitted to the local private hospital, you can't just walk in; you have to be referred by a private consultant. Fair enough. But he doesn't do private consultancy, because he's loyal to the NHS for personal socialistic reasons. So, crap though the NHS is, it is, in this instance, quicker than going private. But it is only quicker because Vic's consultant refuses, for his own personal reasons, to refer any of his patients to private practice — in fact, it is not that the NHS is quicker, but that an NHS doctor is deliberately slowing down the private system for his patients. He can give us the name of a different consultant who doesn't have such scruples, we then wait for an appointment with them, then they refer us to the private clinic, then we'd be at the stage we're already at with the NHS. Or he could, if he wished, simply refer Vic to the private clinic himself, which would be far quicker. What we have here, in effect, is a case of a patient's healthcare suffering due to the clash between her political beliefs and her doctors. It's his job to look after his patients' best interests, not to make it difficult for them to go to the hospital they want to because of his own personal beliefs about the interests of a group of hypothetical patients. Fuck the Hippocratic Oath, eh?
This has to be one of the most insane wastes of public money ever. The only reason for the inquiry was pressure from conspiracy theorists. Some eejit in our Government thought that you could calm conspiracy theorists down by holding an official state-run enquiry. Someone up there actually thought that a significant number of people would, in the light of this report, say "You know, I had thought it was an assassination by Mossad to prevent an alliance between the Church of England and Islam, but I see now that I was wrong: it was just a car crash after all. You live and learn."
Now, how about a full public inquiry into every other car crash in Paris? Or perhaps into the Moon landings?
Monday, December 11
So, if we were to send the pelts of fifty lovely little freshly-skinned chinchillas to a tanner rather than a furrier prior to selling the result to Madonna, she would end up with a hideously expensive jacket that would not only arouse zero outrage but would also look considerably less shite than the one she did, in fact, buy.
I have heard the argument that the reason fur is more reprehensible than leather is that leather comes from animals that are killed for meat, whereas fur is from animals that are killed for their fur, their meat being discarded as a waste product. Firstly, this strikes me as somewhat selectively and stupidly squeamish. Either you come to terms with the idea of killing animals or you don't. What's so noble about killing them for food rather than clothing? It's not like we humans live in the tooth and claw of the wild and would die if we didn't eat meat; vegetarian diets are perfectly nutritious, even if you don't like the flavour. Eating meat is every bit as much a selfish choice made to satisfy your own personal taste as is wearing fur. You, personally, may be at ease with killing for food but not for clothing, and that's fine, but I hardly think that that position is so morally unassailable that you can justify screams of outrage from the mob at anyone who feels differently.
Secondly, where's all the outrage directed at vegetarians who wear leather? For them, it's not a waste product. It puzzles me, actually, that so many vegetarians who won't touch gelatine or rennet — waste products both — are content to wear leather shoes.
People forget what the original reason for the anti-fur campaigns of the Twentieth Century was. Fur often came from endangered species. Some tribesman would trek into the Amazon, kill one of four rare jungle cats left in existence, sell the pelt for, oh, 50p, and it would eventually be sold to some ugly woman with a cigarette holder for a million squillion gajillion pounds. This, for a whole raft of reasons that I shouldn't need to explain, was a problem. A problem completely and utterly solved by fur-farming. Chinchillas, in fact, are a pretty good example: they were hunted into endangerment back in the days when fur came from the wild; now, they're farmed, and not so endangered. Great.
Of course, there are plenty of good arguments to be made against fur-farming on anti-cruelty grounds. Not a single one of those arguments applies to fur without also applying to meat, leather, and milk.
Let's be honest here. Madonna has been singled out for attack for two reasons. One: chinchillas are cute. Two: meat tastes good.
Friday, December 8
The car park at the Ulster Hospital is notoriously annoying in many ways, the most obvious of which is that a private company gets to charge patients good money to park in a facility built using those patients' taxes on land bought with those patients' taxes. Then there's the way that the entry and exit barriers keep going out of sync, so that the machine lets you in when there aren't actually any spaces free and then, having eventually discovered this, you have to pay to get back out, but there aren't any ticket machines in the car park itself, so you have to park your car in order to do so. Having recently spent far too much time there, I've noticed another.
A lot of the spaces are for disabled people only, which is fair enough, and it must be one of the few car parks in the universe where this is actually enforced: park in one of those spaces without a blue badge and you'll get clamped. The problem with this, which seems to have occurred to no-one, is that this is a hospital. The car park is used every day by hundreds of people who are genuinely disabled but don't yet have their official blue disabled badges because they weren't disabled a couple of days ago. Obviously.
Thursday, December 7
To recap, we just had a baby girl, Daisy May Kynaston Reeves, born on the 27th of October 2006, and utterly excellent. For a few days afterwards, all seemed well apart from the usual fatigue and pain that affects anyone who's recently had surgery, be it caesarian or otherwise. Then the fatigue got dramatically worse, Vic got out of breath, her pulse went through the roof, and she was readmitted to hospital with what turned out to be pulmonary embolisms in both lungs — that's blood clots to you and me. She was put on blood-thinners to destroy the clots, but not before her lungs had been damaged. They are expected to take some months to repair themselves.
She was readmitted again a couple of days after she was next discharged, this time coughing up blood. This can be a normal side-effect of being on Warfarin (the blood-thinning drug and, incidentally, rat-poison), but it's the kind of thing you need to check up on anyway. She stayed in another week.
Vic currently has enough strength to climb stairs once or maybe twice a day. She's on a terrible cocktail of drugs: Warfarin for the blood, iron tablets because it turns out she's anaemic, antibiotics for the infections that took advantage of her damaged lungs by moving into them, Cyclazine to stop her throwing all the other drugs up (it doesn't work, though: it's an anti-nausea drug that causes Vic extreme vomiting — go figure), and sleeping pills. Plus the usual insulin and thyroxine that she'd be on anyway. A few of these drugs aren't compatible with each other, so the doses need to be carefully staggered through the day. It's all a bit of a nightmare.
I was rather surprised to realise that Daisy is six weeks old tomorrow. It doesn't seem like she's been around six weeks, because, of course, all our time has been spent thinking about Vic. That's not to say we don't dote on her — she's lying beside me, creating spectacular smells, as I write this — but that time that we had hoped to be spending exclusively on our child is instead... well, not. These things happen.
Anyway, I happened to re-read this post the other day, about the things we were worrying about prior to Vic going into hospital to have the baby. It was interesting to compare our worst-case-scenario worries to what ended up happening.
I have quite a few things to point out now, and I'm not sure it's possible to assemble them into any sort of coherent essay, so here are some observations, in no particular order.
As I mentioned before, Vic's diabetic consultant is rather excellent — one of the best in Northern Ireland, I understand. After the delivery, he visited Vic and expressed his anger that she had been allowed to go through induced labour for so long (seventeen hours or thirty-one hours, depending how you measure it) before the obstetricians finally releneted and gave her a C-section. It transpires that a lot of inductions — most of them, he says — fail these days. He believes that diabetic patients are better off given an elective C-section with no attempted induction first, and that's what he wants for his patients. Unfortunately, in matters of birth, he gets overruled by the Royal College of Midwives, who want everyone to do it the "natural" way.
(The Royal College of Midwives appear not to have understood the Theory of Evolution, then. We don't do things the natural way: we use medicine instead, because it's better. This decision was made thousands of years ago, and it's no good arguing about it now because we already live with its consequences. The natural way is for babies who are too large for their mothers to deliver to die, or for their mothers to die, or both. Natural selection then ensures that very few such babies ever exist. But we don't let such babies die; we use caesarians and other medicinal techniques to save them, allowing them to survive and breed and pass on their big-baby genes. An insistence on doing things the natural way when it comes to birth is, therefore, ignorant and silly. Quite apart from anything else, Vic is diabetic, so the natural way is for her not to give birth at all, but to have died a few years ago instead. But I digress.)
I mentioned here the disgusting trend in British medicine whereby the GMC want doctors not to even tell their patients that treatments exist if those treatments aren't available on the NHS. And that's what happened here. Good though he is, this is Vic's diabetic consultant's one big mistake. It's no good to us for him to tell us afterwards that his recommendation is elective C-section and that inductions tend to fail. He may have lost his fight with the RCM in this hospital, but we still have the option of forking out to go to a different, private, one. The reason we didn't do so was that it really looked like Vic was getting the best care from the best doctors. Had her diabetic consultant told us what his real recommendation was before the event, we would at least have made whatever decision we made on the basis of correct information.
That mistake may well be partly due to the structure of the NHS, but it strikes me that it's more to do with the structure of a hospital and the nature of doctors' and midwives' egos. Every hospital, NHS or private, has policies, and its staff are expected to obey policy even when they disagree with it. That's what's happened here.
Due to her thrombophilia, Vic was on Clexane, another blood-thinner, for the entire pregnancy. She was also given a few huge doses of the stuff the first time she was readmitted with the embolisms. At that time, she was referred to a haemotologist (a blood specialist), who pretty much immediately decided that she had been given far too small a dose. It's another of those things that makes perfect sense in retrospect: of course you should see a haemotologist if you're being given a drug that changes the nature of your blood. But Vic wasn't until after everything had gone wrong. The thinking seemes to have been that Clexane is a treatment for recurrent miscarriage, therefore it's perfectly OK for obstetricians to prescribe it. In fact, well, yes, Clexane is a treatment for recurrent miscarriage, but it is also and more importantly a blood-thinner. In retrospect, it seems wrong that a blood-thinner is being prescribed without any consultation with the hospital's resident blood specialist. What the haemotologist pointed out was that the amount of blood-thinner you should be on varies with the amount of blood you have, and you have a hell of a lot more blood than usual in the late stages of pregnancy. Again, obvious in retrospect — but not so obvious that the obstetricians thought of it.
So, again, we have an error made as a result of doctors' egos. The two obstetricians treating Vic are known to be bloody good in their field. They're the kind of doctors you'd want to see if you went private. There is no reason to suppose that going private would have avoided this problem.
On the other hand, Vic went to see her GP today, and discovered that the following things are not in her medical notes: the fact that she had a CT scan, the results of that scan; the fact that she'd seen a pulmonory specialist, and his name. That's just sloppy, and I have no doubt that the ineffectiveness of bloody NHS bureaucracy is to blame. And it's not a minor thing: considering Vic's condition, there is a good chance of her needing urgent medical care from one day to the next. For her notes to be incomplete — for them not even to mention the name of one of the senior consultants who's been dealing with her case and knows a lot about it that no-one else knows — is appalling and dangerous.
Finally, despite what I said about the official policies of the Royal College of Midwives, I would like to say that the midwives themselves have been consistently brilliant. In fact, they've been the best, most professional, most observant, most caring, most informative, most reliable medical staff we've come across in the last few weeks. At least round these parts, the midwives are more consistently competent than the nurses and most of the doctors. Whatever the diabetic consultant's argument may be with the RCM leadership, the midwives in the delivery suite were excellent and had nothing against caesarians. There was no preaching about the "natural" way; rather, there was a sensible and realistic recognition that induction isn't natural, and neither's diabetes. Later, it was a visiting midwife who noticed that Vic's breathing and pulse were wrong and sent her back to hospital, thereby saving her life. I'm grateful for that.
That's all for now. Daisy needs to be depolluted.