Thursday, 17 February 2011

Of course it was never going to be that simple. . .

On Monday I went to see my GP. It was the first time I had walked in the open air for a week apart from the brief stroll to Joad's car the day before. The sun was shining. The bird's were twittering. All of that was laid on especially for me, you know. And it was much appreciated.

My GP is another credit to the NHS. She is yet another person who manages the trick of appearing wholly concerned with you and your needs even while you know that can't be true. It's a kind of gift. Doctors are not supposed to be any good at blood tests either, but she was pretty good with me. I hardly felt a thing. Sunlight streamed in. It would all be fine now. It was all just a matter of adjusting to the new routine. She smiled. We smiled. It would be fine.

It's all about the INR - the international normalised ratio - which is the measure of the blood's coagulation. The base level is one - indicating a normal person under normal conditions. My target level is 2.5. In other words my blood needs to be 2.5 times less 'clotty' (a word I have invented) than a normal person. I was loaded with warfarin with a side order of clexane until my level rose.

The trouble is, it rose too high. It reached 3.9. You don't want to be too high otherwise you will get all Sam Peckinpah when you nick yourself shaving. So they cut the clexane. Hurray! I was childishly pleased when they said I didn't need clexane on the Saturday night. I'd never considered the idea of jabbing myself with a needle just to experience the joy of stopping.

But when my blood was tested on the Sunday morning, the INR was still high. The nurse that signed me out said 'They are advising you omit warfarin for one day'. Who 'they' were I don't know. But I'd like to give them a couple of doses of clexane just to say thanks.

The GP recommended 2 mgs of warfarin for the nest couple of days as the last test had showed my high INR. I had an outpatient visit booked with the anticoagulation clinic on Thursday where my blood would be tested again.

My wife drove me to Addenbrookes. She has been suffering from frozen shoulders for months and months and this was the first time she had driven in a very long time. She dropped me off and I went to see the 'warfarin nurse' who told me all about my new life with the drug. She also told me that the hospital should not have omitted warfarin.

'You can't do that,' she said.
'Then why did they?'
'Because they don't really understand how it works.'

I went down to have my blood taken. I had to take a ticket like you get at the deli counter and wait. I was number 99. Ping. My turn. My turn to have someone tugging ineffectually on my arm with a needle.

'Which arm do you prefer?'
'I don't mind,' I said.

Who has a preferred arm? I had blood taken every day from arms and hands without pain or problem for a week. This guy did this every day. He ought to be good at it, you'd think. But he tried the left arm. Not the ridge of my arm like the nurses had done, but the smooth bit in the middle. Odd. But he must know what he's doing, I thought. For a while.

Much tapping and fiddling about and he said that the blood wasn't flowing. 'Sometimes it just doesn't.' Hmmm. 'Sometimes'?. I'm going to guess at quite often. Anyway he had a poke around in another vein in my other arm with similar results. Eventually he called in his colleague (I'm guessing superior) who clearly did not appreciate my not seeing the funny side of it all, but got the blood out in seconds. I left with cotton wool taped to the three holes.

Later I get a phone call from my warfarin nurse. The INRs are low - really low. I'm only 1.3 - back where I started practically before I was loaded with the warfarin. 'It's because they omitted you see. . .' She rang my GP practice and one of the doctors - a doctor I did not really know and who seemed very blase about the whole thing - then rang me. They (It was 'they' again) wanted me to inject with clexane. Inject myself. For a week.

Now again - I know lots of people who have had to inject themselves for years and years. I feel bad getting crabby about it. I didn't want to do it, but I actually knew I would cope perfectly well. It's weird but not the worst thing. But it was knowing that it was all unnecessary that rankled. Knowing that whoever suggested that I omit the warfarin - and I will probably never know who that was - not only sentenced me to a regime of injections, but also seriously endangered my health by reducing my INR to a level at which clots were once more a potential hazard and a repeat stroke much more likely than it should have been.

And these are the tiny margins an organisation like the NHS works within: if it is not working perfectly, then something is wrong. No matter how long the good work lasts, it is the bad work you remember. The road can be smooth for a hundred miles, but it's the hole that you notice.

I feel sorry for the blameless doctors and nurses who saw me all that week. If I had managed to escape that Saturday I would never have had that blood test that showed my INRs as high and I would not have been told to omit on the Sunday. My GPs blood test may have shown I was high but I would have simply had my warfarin adjusted. I would have had nothing but praise. But there's that 'What if?' again.

It's always there isn't it?

4 comments:

  1. I was staggered by the unconcern with which i was sent home from MAU after barely 24 hours with a bottle of beta blockers, and no explanation at all of what had happened to me just an appointment to come back for more tests...could barely breathe on the beta blockers I was given, took weeks to get the meds right, but when the tests were done, and I'd badgered for a proper diagnosis and the meds kicked in then Chris, then life gets back to normal - talk about it, that's good x

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  2. I think it is the lurching from fantastic care to less than fantastic care that people find so unsettling. We are shown how it could be - how it should be. And then it is taken away. I'm sorry to hear you had a bad experience but I am very happy to hear how positive you sound now. Long may it continue.

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  3. My mother has had a similar experience when one doctor says one thing (one Warfarin dosage) and then a hospital medic sets a different one. We're managing to keep her levels level now - and have for over a year. There was that one blip in the middle but it took a long while to iron out!
    I know what you mean about everything is tickety - boo when it's all OK. But once something goes wrong..... What we have to remember is to ask questions continually. Even if we feel it makes us a nuisance.

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  4. Absolutely. But then you have to now that there is an issue to ask a question about. That's not always the case. And you can't always query the advice. If someone tells you it is critical that you do something, then you do it. Doctors always have the 'it is in your best interest' card. And mostly it is. But they are not infallible, any more than we are. A lot of problems would be solved by us - and them - accepting that.

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