A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Sunday, 8 November 2009

As expected

It happened. I splatted. I just about lasted the Thursday, although I was going downhill significantly by the evening and knew that I’d end up in hospital by Friday. I think I mentioned that I had to go to my GP early on the Friday morning anyway for my blood results, the conclusion of which was that I’m anaemic and they didn’t know how to treat it because all the iron preparations they could find had something in that I’m allergic to. After we’d talked/gasped through the blood results the doc asked, ‘So how is the breathing?’ which really was a rhetorical question in the circumstances. My short answer was, ‘Rubbish. I’m going to hospital after this,’ and I’m sure that had I not told her I was going to hospital, going directly to hospital and not passing go, that she’d have called the ambulance there and then. She looked fairly reluctant to let me out of the surgery in the first place, but I just about managed to explain that I’d seen my consultant the previous day and we had a plan.

I got home and I got worse, probably precipitated by trying to walk and by having to make various phone calls to the hospital to get hold of my consultant. By this time my fantastic friend W had come over, ready to take me up to the Freeman as soon as we heard back from the consultant’s secretary to say that the ward had a bed for me, and within fifteen minutes of the call we were on the ward ... and I was going further downhill. I think that once I get to hospital sometimes my body kind of knows that it’s in a safe place to let go and I get worse ... it’s a bit weird really, but it’s happened on more than one occasion. So anyway, from then it was a long, hard battle, with the intensive care docs coming up to see me regularly and phoning the ward to check on me at other times. I really, really hate ITU so was relieved to struggle through without having to go there, but I know it was a close call. It took something like 22 hours for things to eventually settle to a more manageable state, and of course afterwards I was completely exhausted so I fell into my post-attack big sleep. My lungs still weren’t great, but they were a whole lot better than they had been on admission and I was able to sleep reasonably well, until I had a very rude awakening on the Sunday morning with my lungs having gone into tight spasm again and I was right back at the beginning. I had another 20 or so hours of battle and ITU coming up and phoning up regularly, and with being so exhausted from the previous struggle to breathe it all felt so much harder. Somewhat amazingly I got through it without having to be taken downstairs, but it was a close call again. It really is horrible. It’s a full day’s run at a sprint, unable to stop for any kind of rest, with no breath or energy to eat to keep you going, and barely able to drink because you’re putting everything you have into breathing quite unsuccessfully and timing the two things so that you don’t choke isn’t easy. Add to this the feeling that you’re trying to breathe through a tiny straw with a pillow stuffed in the end and you get a fraction of an idea of what it’s like.

I made it through. I survived. I fell back into that exhausted and exhausting big sleep and I stayed that way for three or four days, through lighter chest-tightness that the nurses recognised and treated as required, but I was too exhausted to wake up very much for. It’s a strange experience, though it’s not an alien experience for me.

Now I’m mending, with the aminophylline drip down and the oxygen reduced to two litres (I was on 60% so that’s a huge improvement). I’ve been out of bed a few times – the first time only for one exhausting hour, but the next day for four hours, and today I’ll push myself for a lot longer. I need to if I’m to get home, and I’m hoping for that around Tuesday, provided I can get off the oxygen easily enough. This is slightly complicated by the fact that my anaemia has got a significantly worse, with my haemoglobin (Hb) having gone down to 8, which means that my blood doesn’t have the same oxygen-carrying ability that it ought to. It’s also making me feel very light-headed, very tired and generally unwell. However, because my Hb is now so low the docs have had to find some way of treating it, and because there are significant risks with blood transfusions they were reluctant to go in that direction, so they got pharmacy onto the case. One of the pharmacists – Matthew – spent a large part of last Friday investigating iron preparations, including phoning all manufacturers of iron preps. He checked, he double checked, he triple checked and eventually he succeeded in finding one that he was 99.9% sure wouldn’t send me into anaphylaxis and kill me. He brought them to the ward, and the doc gave me my first dose, though he asked for a lesson in using my epi-pen first, which was quite amusing in that he very nearly stabbed himself in the thumb with the pen, despite my giving what I thought were clear instructions. Mind you, he is a bit of chocolate teapot doctor – he’d come in a couple of days previously saying, ‘You know, I don’t think ferrous sulphate has sulphate in it,’ sulphates being one of the things I’m dangerously allergic to. Now I might be wrong, but I’m fairly certain that chemists don’t just pull random names out of a hat when they produce drugs, and I’m guessing that the name ‘ferrous sulphate’ is something of a clue that it contains sulphate. So anyway, after the epi-pen lesson and near-incident I took the first dose of the iron preparation that Matthew had found and I didn’t immediately die – hurray! However, there’s a four hour period of danger between consuming an allergen and it causing an anaphylactic reaction so it was a rather anxious wait for all of us, so I had my epi-pens and call-bell to hand, and each time a nurse went past my room they asked how I was. Thankfully all went smoothly, I’m still alive with no adverse reaction and I’ve had several doses since. This is a huge relief, not only the lack of reaction, but also that the anaemia can now hopefully be sorted and I’ll begin to feel better in that respect soon, although it can take several weeks, even a couple of months, to get the full benefit. At least I might stop passing out/nearly passing out before long, and that would definitely be a good thing.

You know the irony of my admission on 30th October is that this was the date I was supposed to have been doing my sponsored gym marathon to raise money for the Ward 29 – the ward I’m in. I had always put the proviso in that I would only do it on that date if I was able to breathe well enough, which obviously I wasn’t, but I had really hoped that I’d be able to do it when planned. I’m still going to do it, and I’m now planning it for 25th November. I know this isn’t far off and I have to regain strength and fitness in a fairly short period, but I am determined to do this. Nothing I can do, and no amount of money I raise, will ever be a big enough thank you for all the ward does for me and for keeping me alive against the odds. The advantage of having to postpone the gym marathon is that it gives more time to gather more sponsorship, so if you haven’t already and you’d like to please sponsor me/donate through my Just Giving page


B said...

Bloody hell.
I'm glad you're on the mend. But isn't that a ridiculously optimistic date for your gym marathon? It's barely two weeks away!

I'm sure that all concerned would rather that you waited until you were in tip-top condition. I'm tempted to threaten to withhold my tenner if you don't wait another couple of weeks ;)

I'm sorry I've not made it in to see you this time! I'm NaNo-ing furiously (errm, ish) at the mo, so we should get a date in for the beginning of Dec. And I'll stick to it like superglue this time :)

Penelope was asking after you - she was going to try and phone the hospital. I'm not sure if she will have managed to get anywhere but she was really worried about you.

See ya soon x

living_with_ba said...

Glad you're on the mend! That doctor does sound very dippy!

rattles said...

Hahahahaha - Dippy, Blimey - whatever you do dont ever go needing a wart removal or something similar - he'd prob try to rempve your head lol!!!


Get better soon honey
loadsa lv Rattles Xxxx

Not such a Dippy Doc said...

Dippy Doc or not, you can't be as bad as you make out if you're able to complete the marathon so soon after what you describe.

BeckyG said...

'Not such a Dippy Doc', as yet I don't know if I'm going to be up to doing the gym marathon on the proposed and postponed date, and I only will know when I manage to get back home and then to building my strength up again with the physio - my gym marathon being physio supervised. As for not being as bad as I make out, actually you're wrong - I have been very ill. On admission my peak flow was 60, my PaO2 was 10.3 on 60% O2, my PaCO2 was 5.9, my resps were around 30/min and my heart rate was over 130 bpm. Add to that the fact that my Hb has fallen to 8 and it makes for a not very well person. Obviously I am on the mend now - I'm off the aminophylline infusion and back on the oral, the prednisolone is down from 150mg to 130mg, and the O2 is down to 2 litres. This is all great progress and I'm pleased to be able to think that I might get home on Tuesday if all stays stable and my Hb begins to pick up too. However, when I get home I'm not going to waste my time feeling sorry for myself. This is a way of life for me - severe asthma attacks every 6-8 weeks or so (although I've had a slightly longer spell between attacks this last time) - so I like to make the most of the times that I'm home, do what I can, live as much of life as possible while I have it. Okay, sometimes I set myself unrealistic targets, and maybe push myself too far, but that's no reason to stop living. It's no reason to stop setting goals. My goal for my gym marathon is on another provisional date. I will aim for 25th November, but that's not to say that it will actually occur then. Of course I hope it does, but if I'm not up to it then it'll be postponed again. However, as I've already said, I won't put the whole of life on hold or stop making plans to live when life is so precious, and often so very limited. If you have the luxury of general good health without regular battles for life then perhaps you can afford to give yourself more 'recovery' time after serious illness, but when you live life daily with a serious illness then you have to make the most of what you've got when you've got it. It's that or give up, and I'm not prepared to give up.

W said...

Dear Not such a dippy Doc

This is W Beckys friend and I was the one who took Becky to hospital and sat at her bedside holding her handing while watching her fight for life and for every breath that she took.

Becky was very ill indeed and not knowing Becky I don't think it is your place to comment on how unwell she was.

You did not witness it with your own eyes. I did and feel that it appalling that you choose to comment in this manner and leave my
friend who is a truly amazing person both as an individual and in her attitude to her illness and I count it as a blessing to call her my friend.

B said...

I can't help but wonder who has so little to do that they make such inane comments on such a personal blog.

Don't let it get to you xx

BeckyG said...

W and B, thank you for your support re 'Not such a dippy doc'. I'm not going to let his/her comments get to me - life's to short for that - but I do find it very interesting that they haven't come back with a response to my reply. People can be so vocal in arrogance, but when it comes to returing to a point that has hopefully been put right then silence prevails. I see that as cowardice, and that says a lot about a person, imo.

Thanks to all the rest of you too for your lovely comments of support and well wishes. Oh, and for the giggles about not needing the doc to do anything complicated like remove a wart ;oP These kinds of things really lighten my days in hospital and are very much appreciated.


W said...

I wouldn't let not so dippy doc loose on my guinea pig never mind a fellow human being!