I made it home from hospital! I'm not 100% well, I'm still having some renal difficulties, and I'm still terribly swollen with water retention, but I'm okay enough to be out of hospital. Hospitals are great places to pick up infections too, so the sooner one can escape the better, especially if your immune system is suppressed, as mine is from the huge doses of long-term steroids. I'm already a chronic carrier of MRSA, and I don't need anything else to take advantage of my vulnerability. Besides which, I was getting miserable just from being in hospital for so long (18 days I think) and with the various complications that had already occurred. Being MRSA positive is great for getting you your own room (you have to be isolated from other patients) and therefore some privacy, but spending 18 days mostly on your own with life-threatening things happening to you, and on the back of your step-brother's suicide, is not always the best thing for one's mental health. Yes, in that respect I was more than ready to come home, and as I've said before, there's a certain amount of physical getting better that I believe can only happen once you get home anyway. So I escaped yesterday (Friday) evening around 5pm I think it was, and was sat on the sofa with Zach purring all over me 15 minutes later >^..^< I did a huge amount of nothing last night, although W popped by to see how I was doing, and I began to think about coming away.
Last year we had a family holiday in North Yorkshire over my mum's birthday - a gathering of the clans consisting of Mum and J (step-dad); my brother M, his wife, N, and their boys, O and D; my brother C and his wife S; and me. We all had such a lovely time at the cottages we stayed at that we decided to do the same thing again this year, albeit a few weeks later than last year's trip, and this time with the addition of C's and S's 12 week old baby, J. It was planned for this week, and still happening whether or not I'd be able to make it because of being in hospital. It was looking unlikely that I'd be able to go and I think the prospect of missing out was perhaps adding to some of my miserable feelings of the past few days. I have made it though! I am currently in a cottage called 'Badger' in a place not very far from Thirsk in North Yorkshire. My nephews O and D are asleep in the room next to me, although they took a lot of settling tonight, and only eventually went off to sleep after many times of being put back to bed and the last thing O (4) was heard to have to said to D (2 1/2) was, 'That's it, D. I don't think I can do any more rampaging tonight.' :oD Mum and J are asleep in the room across the landing. The rest of the clan are over in the other cottage we've rented here, 'Fox'.
I had a slow morning this morning, gently gathering things together; sorting out meds; stroking Zach; being purred on by Zach; being eaten by Zach (he wasn't at all happy to see me packing a bag so soon after such a long disappearance, and he was definitely letting me know of his disgruntledness); going to the post office to collect a parcel I'd missed being delivered whilst in hospital; making bread to bring away; sorting out some OU stuff; and filling the car with petrol. All very relaxed. All quite tiring given that I only got out of hospital yesterday evening and didn't sleep brilliantly as I never do on my first night out of hospital. I then pootled off southwards at about 4pm, arriving 66 miles away from home about an hour and a half later. The drive was easy with very little traffic, which reduced the number of crazy drivers to negligable. I have to say that I was quite exhausted by the time I got here, and I haven't been out of the cottage since landing, but I'm hoping to be able to relax, unwind, destress, recuperate, heal, and renew my spirit with this family time in the countryside. I will have to do some study while I'm here as I have the final essay for my undergraduate degree with the OU to do. It's supposed to be in by 27th May. I've applied for an extension because of my hospital admission, but after my experience of being refused last year despite being very ill I don't hold out much hope. Anyway, it'd be good to get the essay (ECA - End of Course Assessment) done and sent on time if at all possible, even if it's not going to be my best work. I have to keep reminding myself that I only need to pass this course, and that the level of pass doesn't affect the classification of degree I'm going to get as I've done things backwards (as is my way) and I'm finishing my degree with the foundation course I should've started with, and foundation courses don't contribute to degree classification. Of course it'd be lovely to get a Distinction if I could (and my overall course assessment scores fall well into this bracket), but it doesn't affect anything if I don't, so I actually only need to get 40% in the ECA to pass it, rather than 85% for a Distinction. So yes, I have to do some study while I'm here, but I also need to let myself be restored in body, mind, and spirit. The past few weeks have been very difficult. Here's hoping I can go home on Thursday feeling more like myself.
Showing posts with label MRSA. Show all posts
Showing posts with label MRSA. Show all posts
Saturday, 14 May 2011
Wednesday, 28 July 2010
I spy with my little eye
It's a week since I had my first cataract op and I'm doing okay :o) I had to be at the hospital for 8.30am and was told that I was near the beginning of the list, and then they suddenly realised that I'm MRSA positive (it's been in my notes all along so I don't know why they only just realised) so they moved me to the next door ward, put me in a cubicle, and moved me to the end of the surgery list :o( Consequently I didn't go into theatre until 11.50am. I was in for about half an hour, was taken back down to the ward, told I'd be able to go after 1 to 2 hours so long as my prescription was up. My prescription got lost and I didn't leave the hospital until gone 4.30pm. It was a loooooong day.
So how was it? Um ... okay I guess. It started with some kind of test done on the ward where the nurse numbed my eyes and then put a sensor wotnotthingumyjig (that's technical terminology) onto my eye ball that supposedly detects the strength of implant lens that the surgeon should put in once he's removed the lens with the cataract. It was odd being poked in the eye and not feeling anything, though I have no complaints that I couldn't feel anything! Then the nurse took my glasses away for another check on the implant lens that would be needed (I don't know why they needed to this and the 'poking me in the eye with a sensor wotnotthingumyjig' test), and while they were having whatever check was being done she brought a sample implant lens for me to see. The slight problem was that without my glasses, and with my pupil dilated, I couldn't see a sodding thing. Add to this the fact that the lens was supposedly tiny, transparent and floating somewhere in some clear liquid, the chances of me seeing it were slim to start with. After several times of the nurse trying to point it out to me, and my explaining that I couldn't see it without my glasses, I gave up, lied, and said, 'Oh yes, there it is. It is tiny, isn't it? Amazing.' The nurse seemed satisfied, and she went and got my glasses.
The op itself was weird. By the time I'd done all the waiting around to go up to theatre I thought I was more bored than nervous, but the surgeon had to remind me to breathe at one point. LOL I guess I'm so used to not breathing so well that when I get nervous and hold my breath I don't notice, but once the surgeon asked me to 'take some deep breaths and then just breathe normally,' I heard the beep of the oxygen saturation sensor was down in the lower range of things, but gradually rising as I took some breaths. I don't know what my sats went down to, but they had a little way to come up. I was fine though, and it wasn't anything to do with my asthma; just nerves.
So anyway, the op. It started with a sticky thing being put on my eye to keep my lashes out of the way and a brace being put in it to keep it open. Then a variety of drops were put into my eye, which made me jump every time they went in, although aside from a slight sting from one of them they didn't hurt. At first I could see all the things coming at me, despite the almost blinding theatre lights, but as more of the drops and then I think an injection were put in everything went misty, and then completely white. I thought about what my dad would say and knew he'd say it was interesting, so I concentrated on that thought, took it as my mantra for the whole op, and was thankful that my total blindness was only temporary. Apart from the white I could see the odd shapes that the theatre lights were now making - something akin to butterfly shapes, but with kind of holes in them - and vague, shadowy shapes of things near/in my eye. I could feel pressure at times, but there wasn't any pain, for which I am immensly thankful! And then the surgeon got the hoover out. That's not actually what it's called, but it's basically what it is. There was a lot of swirling in my eye, which I could see and that was very odd, and a weird 'sort of sensation' that I can't really describe, a lot of water dribbling down the side of my face, and a slightly disconcerting sucking sound. After the eye hoovering the synthetic lens was implanted, which I'm told is slipped in folded up and unfolded once it's inside the eye. How amazing is that?! It was another of those 'sort of sensation' moments, but fine. All done, patched up, and doing a fine impersonation of a pirate I was then ready to be taken back to the ward, where I had a lot of frustrated attempts at using my Nintendo DS, but without actually being able to see what I was doing. I had my glasses, but I couldn't get them on with the big patch and eye guard on my right eye bo) As the anaesthetic wore off my eye got very stingy, but I wasn't offered any pain killers so I waited until I got home. The patch had to stay on for the rest of the day and that night, but I could take it off the next day, and I now only have to wear the guard at night for the next week (having already worn it at night for a week), just to make sure that I don't rub it in the night. Mornings seem to be worse for swelling and bruising, but there hasn't been toooooo much of either. At first there was a lot of black and white flickering and it kind of looked like water was boiling in my eye, but that was just everything settling down. I'm still getting some flickering in the mornings, but mostly it's settling well bo)
I have to wait until I've had the left eye done before I can get a new prescription for my glasses - should be about 6 weeks till the second op, but no date yet - so it'll be a while till I get the full benefit of all this, but already I can tell a difference. For starters, I have the central vision back in my right eye! That's amazing! Everything's brighter. Colours are so vivid and vibrant! I hadn't notice how dulled colours had become, probably because the colour was leeched out of my world slowly as the cataracts developed, but now half the world is alive in a romp of colour again bo) And even though I'm yet to have my glasses prescription sorted, things already have more defined edges. The world is made of crystal, not frosted glass! Mind you, now that my right eye is done (the worst of the two) I see how bad the left eye is and I can hardly wait until both eyes are cataract-free and my glasses sorted. At the moment the world's a bit lopsided, but it's already a lot better than it was.
One of the temporary downsides is that I'm not allowed to drive for three weeks from the op - so I have another two weeks to go - and I'm feeling rather cooped up. Until both eyes are done then it seems that I won't be able to read or do any close work bo( I'm getting bored. I want to be doing cross-stitch and reading the novel I started shortly before the op, and I also have some reading to do in preparation for my next OU course. I've ordered some magnifying sheets from an online company but they haven't arrived yet. I'm okay using the computer as I can enlarge the text on the screen, but doing anything else much is proving very difficult and frustrating. The other thing is that I'm not allowed to get water in my eye for two weeks after the op, which isn't generally a problem except for when it comes to washing my hair. I don't have a shower, just a shower hose that attaches to the bath taps, but I can't easily use that backwards. My mum and step-dad stayed with me and looked after me from the day before the op until Sunday (and a marvellous job they did too!), so Mum helped me to wash my hair (leaning backwards over the side of the bath. That is, I was leaning backwards over the side of the bath, not Mum!) while she was here. Since Sunday though I've been to the hair dressers for a wash and blow dry, and have booked in for three more between now and next Wednesday, when I should be okay to do my hair myself again. I have to say that I was surprised at how expensive it is just to have a wash and blow dry (£13), so I'm just thinking of it as post-operative pampering ... or at least trying to.
All in all, it went okay. I was nervous, and it's not an experience I'd suggest putting on your 'Things To Do When Bored' list, but it's going to be fab when I've had both eyes done ... and when I don't have to put eye drops in four times a day ... or take other anitbiotics three times a day for the chest infection that I've managed to pick up along the way. Yes, another one! Still, on the bright side (that'll be the right side, now that the cataract from that eye is gone ;oP ), the driving restriction from the eye op is making me rest up, sofa surf and generally take things easy so my lungs might have more chance of clearing the infection.
So how was it? Um ... okay I guess. It started with some kind of test done on the ward where the nurse numbed my eyes and then put a sensor wotnotthingumyjig (that's technical terminology) onto my eye ball that supposedly detects the strength of implant lens that the surgeon should put in once he's removed the lens with the cataract. It was odd being poked in the eye and not feeling anything, though I have no complaints that I couldn't feel anything! Then the nurse took my glasses away for another check on the implant lens that would be needed (I don't know why they needed to this and the 'poking me in the eye with a sensor wotnotthingumyjig' test), and while they were having whatever check was being done she brought a sample implant lens for me to see. The slight problem was that without my glasses, and with my pupil dilated, I couldn't see a sodding thing. Add to this the fact that the lens was supposedly tiny, transparent and floating somewhere in some clear liquid, the chances of me seeing it were slim to start with. After several times of the nurse trying to point it out to me, and my explaining that I couldn't see it without my glasses, I gave up, lied, and said, 'Oh yes, there it is. It is tiny, isn't it? Amazing.' The nurse seemed satisfied, and she went and got my glasses.
The op itself was weird. By the time I'd done all the waiting around to go up to theatre I thought I was more bored than nervous, but the surgeon had to remind me to breathe at one point. LOL I guess I'm so used to not breathing so well that when I get nervous and hold my breath I don't notice, but once the surgeon asked me to 'take some deep breaths and then just breathe normally,' I heard the beep of the oxygen saturation sensor was down in the lower range of things, but gradually rising as I took some breaths. I don't know what my sats went down to, but they had a little way to come up. I was fine though, and it wasn't anything to do with my asthma; just nerves.
So anyway, the op. It started with a sticky thing being put on my eye to keep my lashes out of the way and a brace being put in it to keep it open. Then a variety of drops were put into my eye, which made me jump every time they went in, although aside from a slight sting from one of them they didn't hurt. At first I could see all the things coming at me, despite the almost blinding theatre lights, but as more of the drops and then I think an injection were put in everything went misty, and then completely white. I thought about what my dad would say and knew he'd say it was interesting, so I concentrated on that thought, took it as my mantra for the whole op, and was thankful that my total blindness was only temporary. Apart from the white I could see the odd shapes that the theatre lights were now making - something akin to butterfly shapes, but with kind of holes in them - and vague, shadowy shapes of things near/in my eye. I could feel pressure at times, but there wasn't any pain, for which I am immensly thankful! And then the surgeon got the hoover out. That's not actually what it's called, but it's basically what it is. There was a lot of swirling in my eye, which I could see and that was very odd, and a weird 'sort of sensation' that I can't really describe, a lot of water dribbling down the side of my face, and a slightly disconcerting sucking sound. After the eye hoovering the synthetic lens was implanted, which I'm told is slipped in folded up and unfolded once it's inside the eye. How amazing is that?! It was another of those 'sort of sensation' moments, but fine. All done, patched up, and doing a fine impersonation of a pirate I was then ready to be taken back to the ward, where I had a lot of frustrated attempts at using my Nintendo DS, but without actually being able to see what I was doing. I had my glasses, but I couldn't get them on with the big patch and eye guard on my right eye bo) As the anaesthetic wore off my eye got very stingy, but I wasn't offered any pain killers so I waited until I got home. The patch had to stay on for the rest of the day and that night, but I could take it off the next day, and I now only have to wear the guard at night for the next week (having already worn it at night for a week), just to make sure that I don't rub it in the night. Mornings seem to be worse for swelling and bruising, but there hasn't been toooooo much of either. At first there was a lot of black and white flickering and it kind of looked like water was boiling in my eye, but that was just everything settling down. I'm still getting some flickering in the mornings, but mostly it's settling well bo)
I have to wait until I've had the left eye done before I can get a new prescription for my glasses - should be about 6 weeks till the second op, but no date yet - so it'll be a while till I get the full benefit of all this, but already I can tell a difference. For starters, I have the central vision back in my right eye! That's amazing! Everything's brighter. Colours are so vivid and vibrant! I hadn't notice how dulled colours had become, probably because the colour was leeched out of my world slowly as the cataracts developed, but now half the world is alive in a romp of colour again bo) And even though I'm yet to have my glasses prescription sorted, things already have more defined edges. The world is made of crystal, not frosted glass! Mind you, now that my right eye is done (the worst of the two) I see how bad the left eye is and I can hardly wait until both eyes are cataract-free and my glasses sorted. At the moment the world's a bit lopsided, but it's already a lot better than it was.
One of the temporary downsides is that I'm not allowed to drive for three weeks from the op - so I have another two weeks to go - and I'm feeling rather cooped up. Until both eyes are done then it seems that I won't be able to read or do any close work bo( I'm getting bored. I want to be doing cross-stitch and reading the novel I started shortly before the op, and I also have some reading to do in preparation for my next OU course. I've ordered some magnifying sheets from an online company but they haven't arrived yet. I'm okay using the computer as I can enlarge the text on the screen, but doing anything else much is proving very difficult and frustrating. The other thing is that I'm not allowed to get water in my eye for two weeks after the op, which isn't generally a problem except for when it comes to washing my hair. I don't have a shower, just a shower hose that attaches to the bath taps, but I can't easily use that backwards. My mum and step-dad stayed with me and looked after me from the day before the op until Sunday (and a marvellous job they did too!), so Mum helped me to wash my hair (leaning backwards over the side of the bath. That is, I was leaning backwards over the side of the bath, not Mum!) while she was here. Since Sunday though I've been to the hair dressers for a wash and blow dry, and have booked in for three more between now and next Wednesday, when I should be okay to do my hair myself again. I have to say that I was surprised at how expensive it is just to have a wash and blow dry (£13), so I'm just thinking of it as post-operative pampering ... or at least trying to.
All in all, it went okay. I was nervous, and it's not an experience I'd suggest putting on your 'Things To Do When Bored' list, but it's going to be fab when I've had both eyes done ... and when I don't have to put eye drops in four times a day ... or take other anitbiotics three times a day for the chest infection that I've managed to pick up along the way. Yes, another one! Still, on the bright side (that'll be the right side, now that the cataract from that eye is gone ;oP ), the driving restriction from the eye op is making me rest up, sofa surf and generally take things easy so my lungs might have more chance of clearing the infection.
Tuesday, 6 April 2010
Head-spin
I haven't forgotten you. I'm still here. I've just been rather preoccupied. First of all, I did inevitably end up in hospital after my last post. I called the ward first, but they didn't have any beds so I called my GP. The receptionist gave me an appointment for 4pm, but an hour later I had a call from them to say that the doc had seen me on the list, asked the receptionist how I'd sounded when I'd rung, been told that I sounded ill, and so asked them to phone me back and ask me to come in asap. So I took myself up to the doctors (actually a friend took me up there in the car, even though it's only a few streets away, but multi-tasking walking and breathing wasn't my thing at the time), and went straight from there to hospital. My GP knows of the problems I've had at RVI before, so knows of my reluctance to go there. He phoned Ward 29 and managed to persuade them that they did have a bed for me really so I was able to go straight to my second home and be treated by people who know how to treat me, and who treat me well. It took a long time for things to settle, and as usual I didn't get any sleep the first night, because I was having to concentrate on getting every breath in and out. Things did eventually settle enough for me to get some rest, and I did my usual thing of sleeping for several days, but progress was slow, I stayed on the aminophylline infusion for over a week as my lungs were so precarious, and I was in hospital for two weeks altogether. I know that I usually update my blog from hospital, but my internet connection (mobile broadband when I'm in hospital) was rubbish, so apologies for that. Since then I've been trying to get my head around a few things.
When I was in this time the issue of getting venous access was a big thing again. It's getting more and more difficult to get a line into me, and while persistence can pay off, it most usually takes at least 45 minutes or more to find a vein and actually get a cannula into me these days. In a non-urgent situation this an uncomfortable nuicance, but in the midst of a life-threatening asthma attack this is getting too dangerous, and it's only a matter of time before the docs can't get access in time. One solution would be to have a portacath fitted - a piece of permenant plumbing - and discussions are now in progress about my suitability for it. The respiratory consultant who 'fits' them - Dr G - is at the RVI, and is someone I've met on several occasions so he knows some of my history, which is helpful. The surgery isn't risk free (no surgery is), even though it's usually done under local anaesthetic, as there's the possibility of lung collapse, and of course the risk of infection. One of the complicating factors with me is that I'm MRSA positive and apparently Dr G always insists that patients are MRSA-free before having the op. This is only right and proper in most cases, but I'm allergic to the MRSA eradication treatment so getting rid of it is pretty much impossible. There are a few antibiotics that can be tried, but I've had at least one of them on several occasions over the years that I've been MRSA positive (I've had them for infections) and I'm still positive so it seems that Mrs A likes my company and is reluctant to leave me be. It might be that Dr G has to make an exception in my case if the decision is made that I'm to have a portacath implanted. The other consideration is that people have to be trained to use them, and while that's fine if I'm on Ward 29 where there are plenty of staff who know how to use them and have the training, it's not so good in A&E if I end up there. J, the charge nurse on the ward, said that he could provide some printed instructions, but they're hardly ideal and certainly don't replace the need for training. I asked if I could be trained to use it so that if/when I end up in A&E I could do what's required myself. J said that in theory this is possible, but in practice it's unlikely that I'd be well enough by the time I get to A&E to be able to do what's required. I think this is the main issue and reason for debate about my suitability for a port, but my consultant - Dr H - is going to discuss it with Dr G. Portacaths aren't usually fitted in people with asthma - they're more often used in people with cystic fibrosis or bronchiectasis - so it's a big acknowledgement of where things have got to with me. It's a lot to get my head around, but I think it's the way forward. It's not exactly something to want, but given the situation I'm in and the fact that it's too often getting too close to not getting venous access in time, I think I do want this (if you know what I mean). I also trust J implicitly, and I think it's highly significant that he's suggesting and supporting the idea of a portacath for me as he's certainly not one to opt for these things unless absolutely necessary. He knows that I 'want' it too and is urging Dr H to agree with the suggestion. Dr H himself isn't averse to the idea, and he certainly knows of the difficulties of getting venous access in me, but he wants to discuss it with Dr G first and get his opinion as well. I'm anxious to get an answer, and had been hoping that Dr H would contact me to let me know the outcome of any discussion. He may do yet as I know that both Dr G and Dr H have been away (not together!) so the discussion may not have happened yet, but I want to know, and preferably before my next out patients appointment in a couple of weeks time.
Another big thing that came from this most recent admission is that they cultured the pseudomonas bacterium in my sputum. Apparently it is possible for people who spend a lot of time in hospital to 'get' pseudomonas, but it's most commonly found in people with bronchiectasis - a kind of permenant lung damage - so the doctors are now questioning whether or not I have a degree of bronchiectasis on top of the asthma. Pseudomonas is an indicator of it, but a CT scan would need to be done to confirm or reject a diagnosis, and it will be up to Dr H to decide if/when this needs to be done. The sputum culture only came back about two days before I was discharged, and during a weekend when Dr H wasn't at work so I've yet to discuss it with him, but it's another big thing that's had my head in a bit of a spin. In some ways a diagnosis of bronchiectasis would explain a few things, like the increase in chest infections that I've had over the past nine months or so, and the fact that it's been taking longer and longer for me to get over the acute asthma attacks. And in some ways, in the immediate term things may not change very much regarding medication and quality of life, but bronchiectasis tends to be progressive, particularly if there's additional underlying problems, so coulpled with my asthma the prognosis wouldn't be very good. I'm trying not to think about it too much until I've had a chance to talk about it with Dr H and maybe have a CT scan, but I can't help but have it go through my mind a certain amount. It's a lot to take in...
And then there's my cataracts, that are a consequence of the long-term high-dose steroids(ridiculously high-dose - they were at 120mg while I was in hospital!) I take for my asthma. I've had the cataracts for five years, and although they're small they're absolutely central and are now getting a lot denser. The one in my right eye is worse than the one in my left, which is slightly unfortunate as I have Holmes-Adie Pupil in the left eye so my vision isn't great from that. In the past the ophthalmologists have said that they'd never operate on my cataracts because of the risks of surgery on my lungs, even though cataract surgery is usually done under local anaesthetic (they've said there's still a risk), but when I saw the optician recently she said that she thinks the cataracts now need operating on. She wrote to my GP, who referred me back to the ophthalmologists and I had an out patient appointment with them last Thursday. W came with me for moral support and to help (if needs be) put my point across that I'd much rather take the possibility of risks from surgery than the definite scenario of blindness from cataracts. In the end I was able to tell them this, and although they were reluctant at first and requested another doctor come and examine me to assess my need for surgery and weigh up the risks, they have agreed to do the op! They've decided that because of my 'complicated medical history' only a consultant should do the op, not an SpR, but that suits me fine, because quite frankly if someone's going to come and stab me in the eye with a knife I want it to be someone who *really* knows what they're doing. I don't have a date yet, but it should be within the next two to three months. I'm so pleased, although again it's a big thing (at least it is for me!), so while it's good news and definitely what I want it's something else to be getting my head around.
It's a lot. It's a heck of a lot. At times I've felt as though my head is going to explode with all that's been going on, so apologies again for not having updated in so long, but sometimes I need to spend a bit of time assimilating this kind of stuff on my own before sharing it with everyone.
When I was in this time the issue of getting venous access was a big thing again. It's getting more and more difficult to get a line into me, and while persistence can pay off, it most usually takes at least 45 minutes or more to find a vein and actually get a cannula into me these days. In a non-urgent situation this an uncomfortable nuicance, but in the midst of a life-threatening asthma attack this is getting too dangerous, and it's only a matter of time before the docs can't get access in time. One solution would be to have a portacath fitted - a piece of permenant plumbing - and discussions are now in progress about my suitability for it. The respiratory consultant who 'fits' them - Dr G - is at the RVI, and is someone I've met on several occasions so he knows some of my history, which is helpful. The surgery isn't risk free (no surgery is), even though it's usually done under local anaesthetic, as there's the possibility of lung collapse, and of course the risk of infection. One of the complicating factors with me is that I'm MRSA positive and apparently Dr G always insists that patients are MRSA-free before having the op. This is only right and proper in most cases, but I'm allergic to the MRSA eradication treatment so getting rid of it is pretty much impossible. There are a few antibiotics that can be tried, but I've had at least one of them on several occasions over the years that I've been MRSA positive (I've had them for infections) and I'm still positive so it seems that Mrs A likes my company and is reluctant to leave me be. It might be that Dr G has to make an exception in my case if the decision is made that I'm to have a portacath implanted. The other consideration is that people have to be trained to use them, and while that's fine if I'm on Ward 29 where there are plenty of staff who know how to use them and have the training, it's not so good in A&E if I end up there. J, the charge nurse on the ward, said that he could provide some printed instructions, but they're hardly ideal and certainly don't replace the need for training. I asked if I could be trained to use it so that if/when I end up in A&E I could do what's required myself. J said that in theory this is possible, but in practice it's unlikely that I'd be well enough by the time I get to A&E to be able to do what's required. I think this is the main issue and reason for debate about my suitability for a port, but my consultant - Dr H - is going to discuss it with Dr G. Portacaths aren't usually fitted in people with asthma - they're more often used in people with cystic fibrosis or bronchiectasis - so it's a big acknowledgement of where things have got to with me. It's a lot to get my head around, but I think it's the way forward. It's not exactly something to want, but given the situation I'm in and the fact that it's too often getting too close to not getting venous access in time, I think I do want this (if you know what I mean). I also trust J implicitly, and I think it's highly significant that he's suggesting and supporting the idea of a portacath for me as he's certainly not one to opt for these things unless absolutely necessary. He knows that I 'want' it too and is urging Dr H to agree with the suggestion. Dr H himself isn't averse to the idea, and he certainly knows of the difficulties of getting venous access in me, but he wants to discuss it with Dr G first and get his opinion as well. I'm anxious to get an answer, and had been hoping that Dr H would contact me to let me know the outcome of any discussion. He may do yet as I know that both Dr G and Dr H have been away (not together!) so the discussion may not have happened yet, but I want to know, and preferably before my next out patients appointment in a couple of weeks time.
Another big thing that came from this most recent admission is that they cultured the pseudomonas bacterium in my sputum. Apparently it is possible for people who spend a lot of time in hospital to 'get' pseudomonas, but it's most commonly found in people with bronchiectasis - a kind of permenant lung damage - so the doctors are now questioning whether or not I have a degree of bronchiectasis on top of the asthma. Pseudomonas is an indicator of it, but a CT scan would need to be done to confirm or reject a diagnosis, and it will be up to Dr H to decide if/when this needs to be done. The sputum culture only came back about two days before I was discharged, and during a weekend when Dr H wasn't at work so I've yet to discuss it with him, but it's another big thing that's had my head in a bit of a spin. In some ways a diagnosis of bronchiectasis would explain a few things, like the increase in chest infections that I've had over the past nine months or so, and the fact that it's been taking longer and longer for me to get over the acute asthma attacks. And in some ways, in the immediate term things may not change very much regarding medication and quality of life, but bronchiectasis tends to be progressive, particularly if there's additional underlying problems, so coulpled with my asthma the prognosis wouldn't be very good. I'm trying not to think about it too much until I've had a chance to talk about it with Dr H and maybe have a CT scan, but I can't help but have it go through my mind a certain amount. It's a lot to take in...
And then there's my cataracts, that are a consequence of the long-term high-dose steroids(ridiculously high-dose - they were at 120mg while I was in hospital!) I take for my asthma. I've had the cataracts for five years, and although they're small they're absolutely central and are now getting a lot denser. The one in my right eye is worse than the one in my left, which is slightly unfortunate as I have Holmes-Adie Pupil in the left eye so my vision isn't great from that. In the past the ophthalmologists have said that they'd never operate on my cataracts because of the risks of surgery on my lungs, even though cataract surgery is usually done under local anaesthetic (they've said there's still a risk), but when I saw the optician recently she said that she thinks the cataracts now need operating on. She wrote to my GP, who referred me back to the ophthalmologists and I had an out patient appointment with them last Thursday. W came with me for moral support and to help (if needs be) put my point across that I'd much rather take the possibility of risks from surgery than the definite scenario of blindness from cataracts. In the end I was able to tell them this, and although they were reluctant at first and requested another doctor come and examine me to assess my need for surgery and weigh up the risks, they have agreed to do the op! They've decided that because of my 'complicated medical history' only a consultant should do the op, not an SpR, but that suits me fine, because quite frankly if someone's going to come and stab me in the eye with a knife I want it to be someone who *really* knows what they're doing. I don't have a date yet, but it should be within the next two to three months. I'm so pleased, although again it's a big thing (at least it is for me!), so while it's good news and definitely what I want it's something else to be getting my head around.
It's a lot. It's a heck of a lot. At times I've felt as though my head is going to explode with all that's been going on, so apologies again for not having updated in so long, but sometimes I need to spend a bit of time assimilating this kind of stuff on my own before sharing it with everyone.
Thursday, 23 July 2009
I am alive!
I am alive. This wasn’t wholly expected last week and I nearly didn’t make it through.
After my last post I did make it to 8:30am (just about) and called the GP surgery. I managed to gasp down the phone to Michelle, one of the receptionists I know well, that I needed to see a doctor and would it be possible to be seen almost immediately. She said I would but was I well enough to go to the surgery. Well no, I wasn’t, but as you will know from my last post I lost all ability to make sensible judgements so I said I would get there, and I did ... but I walked! It can only have been through the grace of God that I got there without collapsing. I arrived. I waited. Michelle came through to say that Dr Cn (the emergency doc for that day) hadn’t come in yet and asked me if I wanted her to phone him. I managed to gasp, ‘Anyone. I don’t care who.’ Within minutes Dr Cg called me through. I was barely able to make it down the corridor by this time, but somehow managed to get to Cn’s room where Dr Cg was seeing me. Dr Cg looked aghast at my state and immediately said I was going to hospital, which shouldn’t have been a surprise to me, but for some reason it was. He listened to my lungs, took my pulse, dashed out of the room and came back very quickly with a bottle of oxygen, which he then plugged me into. Dr Cn arrived, apologised, glanced at me, and looked scared. Dr Cg looked scared back at him and then said, ‘No breath sounds. Weak pulse.’ I was left in Dr Cn’s capable hands ... not that there was much he could do. He too said there was no doubt that I was going to hospital, and although I was completely unable to speak by this time I managed to communicate through writing that I wanted only to go to Ward 29 at the Freeman, and that I’d had some bad experiences at A&E in the past, although at this time I was unable to explain what they were. He rang the ward. They had no beds. I was going to have to go to A&E. He called the paramedics and in the 5 minutes or so that it took them to arrive I told Dr Cn (again through writing) that I was scared; that I was always scared when I had an attack and that I never got used to being so close to my mortality. He didn’t try to avoid it or say it’d all be okay. Instead I saw the reality of it sink into his consciousness and he just said, ‘Yes.’ I am hugely grateful to him for that, because all too often people can’t cope with my fear, probably because it makes them consider their own mortality, and they try to squash it. Allowing me to say I was scared helped me to feel not quite so alone.
The paramedics arrived while I was texting family and some friends to tell them what was happening. Despite not having a working car, and having just finished a night shift, W said she was on her way to meet me at A&E. And while I was being whisked out of the surgery by the paramedics Dr Cn rang A&E to tell them I was on my way but that I didn’t like it there and was anxious about how I might be treated so please treat me well. That was so lovely of him, and I think it really helped.
When in the ambulance the paramedic gave me a shot of adrenaline to try to help things, then tried to get a cannula in, but my veins are so knacked that he didn’t manage and he didn’t want to hang around too long, so we set off with lights and sirens and the paramedic (I think he was called Brian) called through to A&E to prepare them for my arrival, giving an ETA of 5 minutes, which is pretty damn quick for around 5 miles through the city! When we arrived at A&E W had also just arrived and she met me at the ambulance door, having heard the sound of the nebuliser and guessing it was me. W followed as I was rushed into resus where a team of medics and nurses were waiting for me, and there started the desperate fight to save my life, which was ebbing from me. I have relatively patchy memories of events in resus, although more is coming back to me with time, and it’s helped to talk it through with W too who stayed with me the whole time (bless her, she’s been utterly amazing this past week and a bit). I know that when I arrived they weren’t able to get a blood pressure from me until they’d pumped a load of fluids into my veins at great speed, using a pressure bag on the bag of Hartmann’s Solution. I remember having blood gases done, and I know it was more than once, but not how many times. I remember having the aminophylline and salbutamol infusions put up. I remember them putting an arterial line in, and I remember them talking about intubation and getting all the drugs and tubes together for that. Thankfully I managed to avoid intubation ventilation, but they did put me on BiPAP – a kind of non-invasive ventilation (NIV). This isn’t a usual course of action for ventilation of asthmatics, but the ITU consultant anaesthetist who came to see me in A&E wanted to try it first as there are significant risks of intubation, which includes the risk of the tube aggravating the lungs and thus causing difficulties with coming off the ventilator. I was also very keen to avoid intubation if possible, and was relieved to find the BiPAP did help. I still certainly had to work very hard, and the pressures were relatively high (so I’m told), but any relief was better than none, and I became a bit more alert fairly quickly. The anaesthetist did say that intubation was a judgement call that ultimately they would have to make and that although there were risks with it, there were also risks with avoiding it, so at the end of the day if they felt they needed to put me to sleep then they would. Then we had to wait to see if I would improve enough to be shipped across the city to RVI ITU/HDU, or if I’d have to stay at the General Hospital (NGH) ITU. I really didn’t want that, because the last time I was there was when they turned off my best friend’s life support machine 3 years ago. Thankfully I did improve just enough for transfer, although the ITU SpR (registrar – one doc below consultant) came with me in the ambulance, bringing with him all the intubation equipment and meds in case of any deterioration. And the last thing the ITU consultant said to me was, ‘All the best. I hope you get through this one.’ I knew what trouble I was in, but that was an indicator of how much trouble he knew me to be in as well. Not easy to hear, but I respect him more for his honesty.
I stayed on BiPAP for 24 hours and in ITU/HDU for 48 hours ... or maybe it was longer ... I don’t really remember, but I was very keen to get over to Freeman Hospital Ward 29 as soon as possible. In part this was because Ward 29 is like a second home and I know that I’m in excellent hands, but also because RVI haven’t always been very good at checking on things I’m allergic to, and I’ve had some close calls in other aspects of treatment at times, so I feel like I always have to be on my guard when I’m there. Of course I had to be well enough to leave critical care first, but I did eventually make it over to Ward 29, and I’m still there now. It turns out that in addition to the asthma I also have a ‘heavy growth’ MRSA chest infection, which has been causing me to cough up some thick blood. My haemoglobin levels are on the low side too, which may have been caused by the MRSA infection, but the docs aren’t completely sure yet so they’re keeping an eye on that aspect of things too.
It’s been a very rough ride this one, and I’m only just beginning to get my energy back. I’m on antibiotics (doxycycline) for the infection and after a few doses of that I started to feel a bit more like myself, even if still rather wiped out. Given the time I’ve had, and the all too close call with death, it’s not surprising I’m exhausted, and the doctors keep reminding me of that. It’s good to feel like I’m starting to make more progress now, even if I do still have a way to go, and it’s very good to be alive.
After my last post I did make it to 8:30am (just about) and called the GP surgery. I managed to gasp down the phone to Michelle, one of the receptionists I know well, that I needed to see a doctor and would it be possible to be seen almost immediately. She said I would but was I well enough to go to the surgery. Well no, I wasn’t, but as you will know from my last post I lost all ability to make sensible judgements so I said I would get there, and I did ... but I walked! It can only have been through the grace of God that I got there without collapsing. I arrived. I waited. Michelle came through to say that Dr Cn (the emergency doc for that day) hadn’t come in yet and asked me if I wanted her to phone him. I managed to gasp, ‘Anyone. I don’t care who.’ Within minutes Dr Cg called me through. I was barely able to make it down the corridor by this time, but somehow managed to get to Cn’s room where Dr Cg was seeing me. Dr Cg looked aghast at my state and immediately said I was going to hospital, which shouldn’t have been a surprise to me, but for some reason it was. He listened to my lungs, took my pulse, dashed out of the room and came back very quickly with a bottle of oxygen, which he then plugged me into. Dr Cn arrived, apologised, glanced at me, and looked scared. Dr Cg looked scared back at him and then said, ‘No breath sounds. Weak pulse.’ I was left in Dr Cn’s capable hands ... not that there was much he could do. He too said there was no doubt that I was going to hospital, and although I was completely unable to speak by this time I managed to communicate through writing that I wanted only to go to Ward 29 at the Freeman, and that I’d had some bad experiences at A&E in the past, although at this time I was unable to explain what they were. He rang the ward. They had no beds. I was going to have to go to A&E. He called the paramedics and in the 5 minutes or so that it took them to arrive I told Dr Cn (again through writing) that I was scared; that I was always scared when I had an attack and that I never got used to being so close to my mortality. He didn’t try to avoid it or say it’d all be okay. Instead I saw the reality of it sink into his consciousness and he just said, ‘Yes.’ I am hugely grateful to him for that, because all too often people can’t cope with my fear, probably because it makes them consider their own mortality, and they try to squash it. Allowing me to say I was scared helped me to feel not quite so alone.
The paramedics arrived while I was texting family and some friends to tell them what was happening. Despite not having a working car, and having just finished a night shift, W said she was on her way to meet me at A&E. And while I was being whisked out of the surgery by the paramedics Dr Cn rang A&E to tell them I was on my way but that I didn’t like it there and was anxious about how I might be treated so please treat me well. That was so lovely of him, and I think it really helped.
When in the ambulance the paramedic gave me a shot of adrenaline to try to help things, then tried to get a cannula in, but my veins are so knacked that he didn’t manage and he didn’t want to hang around too long, so we set off with lights and sirens and the paramedic (I think he was called Brian) called through to A&E to prepare them for my arrival, giving an ETA of 5 minutes, which is pretty damn quick for around 5 miles through the city! When we arrived at A&E W had also just arrived and she met me at the ambulance door, having heard the sound of the nebuliser and guessing it was me. W followed as I was rushed into resus where a team of medics and nurses were waiting for me, and there started the desperate fight to save my life, which was ebbing from me. I have relatively patchy memories of events in resus, although more is coming back to me with time, and it’s helped to talk it through with W too who stayed with me the whole time (bless her, she’s been utterly amazing this past week and a bit). I know that when I arrived they weren’t able to get a blood pressure from me until they’d pumped a load of fluids into my veins at great speed, using a pressure bag on the bag of Hartmann’s Solution. I remember having blood gases done, and I know it was more than once, but not how many times. I remember having the aminophylline and salbutamol infusions put up. I remember them putting an arterial line in, and I remember them talking about intubation and getting all the drugs and tubes together for that. Thankfully I managed to avoid intubation ventilation, but they did put me on BiPAP – a kind of non-invasive ventilation (NIV). This isn’t a usual course of action for ventilation of asthmatics, but the ITU consultant anaesthetist who came to see me in A&E wanted to try it first as there are significant risks of intubation, which includes the risk of the tube aggravating the lungs and thus causing difficulties with coming off the ventilator. I was also very keen to avoid intubation if possible, and was relieved to find the BiPAP did help. I still certainly had to work very hard, and the pressures were relatively high (so I’m told), but any relief was better than none, and I became a bit more alert fairly quickly. The anaesthetist did say that intubation was a judgement call that ultimately they would have to make and that although there were risks with it, there were also risks with avoiding it, so at the end of the day if they felt they needed to put me to sleep then they would. Then we had to wait to see if I would improve enough to be shipped across the city to RVI ITU/HDU, or if I’d have to stay at the General Hospital (NGH) ITU. I really didn’t want that, because the last time I was there was when they turned off my best friend’s life support machine 3 years ago. Thankfully I did improve just enough for transfer, although the ITU SpR (registrar – one doc below consultant) came with me in the ambulance, bringing with him all the intubation equipment and meds in case of any deterioration. And the last thing the ITU consultant said to me was, ‘All the best. I hope you get through this one.’ I knew what trouble I was in, but that was an indicator of how much trouble he knew me to be in as well. Not easy to hear, but I respect him more for his honesty.
I stayed on BiPAP for 24 hours and in ITU/HDU for 48 hours ... or maybe it was longer ... I don’t really remember, but I was very keen to get over to Freeman Hospital Ward 29 as soon as possible. In part this was because Ward 29 is like a second home and I know that I’m in excellent hands, but also because RVI haven’t always been very good at checking on things I’m allergic to, and I’ve had some close calls in other aspects of treatment at times, so I feel like I always have to be on my guard when I’m there. Of course I had to be well enough to leave critical care first, but I did eventually make it over to Ward 29, and I’m still there now. It turns out that in addition to the asthma I also have a ‘heavy growth’ MRSA chest infection, which has been causing me to cough up some thick blood. My haemoglobin levels are on the low side too, which may have been caused by the MRSA infection, but the docs aren’t completely sure yet so they’re keeping an eye on that aspect of things too.
It’s been a very rough ride this one, and I’m only just beginning to get my energy back. I’m on antibiotics (doxycycline) for the infection and after a few doses of that I started to feel a bit more like myself, even if still rather wiped out. Given the time I’ve had, and the all too close call with death, it’s not surprising I’m exhausted, and the doctors keep reminding me of that. It’s good to feel like I’m starting to make more progress now, even if I do still have a way to go, and it’s very good to be alive.
Sunday, 16 November 2008
With thanks
Less than an hour after writing my last post I was in dire straits and had the paramedics coming for me. The speed with which I deteriorated was startling, and within 10 minutes my peak flow dropped from 100 to unrecordable. I'd had a couple of friends on stand-by for a few days for when I needed to go in, so I called them and even though one of them was in bed asleep they both came round straight away and were here just before the paramedics, who themselves arrived very quickly. My friends N and J hadn't seen me in quite that state before so I think they were a little shocked, as were the paramedics, who I have to say were brilliant, got me straight into the ambulance where they tried to cannulate me, but with my veins being so overused they didn't actually manage to get one in, but they did give me subcut adrenaline in the hope that it'd help. Unfortunately it didn't help and I think I was actually a little worse by the time we got to the hospital. N sat in the front of ambulance with one of the paramedics on the way to the hospital and was told that the crew had been on all weekend, and although it was by then Monday, I was their first call who wasn't a drunk! Apparently they said that my call had made them feel like they'd done something worthwhile and reminded them what the job was all about. How awful that paramedics can be made to feel like they're not worthwhile and are used as a taxi service for people with nothing wrong with them other than the consumption of too much alcohol. I am so very thankful that they do the amazing work that they do.
When we arrived at A&E I was taken straight into resus where there was a bit of a panic about getting a cannula into me, which was proving very difficult and took several people several attempts, but they were eventually successful. Thank God. They quickly gave me all the drugs they could, but they're limited in what they can give me as I'm allergic to a couple of the ones that are often given for severe asthma attacks, so all they can do is give me what they can and then wait and hope. Unfortunately things were taking rather a long time, I had silent chest, my oxygen levels were low on high flow oxygen, my blood pressure was occasionally going a little too low, my breathing rate was apparently 40 breaths per minute and my heart rate was somewhere around 160. All in all, I was really ill and not improving, so the A&E reg called in the anaesthetists, who were obviously worried and wanted me in ITU. There weren't any ITU beds in the hospital where A&E is, and there weren't any at the hospital where patients are usually transferred to from A&E. There was one at the Freeman, but because there's no emergency admissions unit there, and it was 'out of hours', the ITU reg at Freeman said that they couldn't take me. The A&E anaesthetist got onto his boss, who turned out to be the medical director on call, explained the situation, and got the message back that an essential bed couldn't be blocked in such circumstances and that I was to be admitted into Freeman's ITU under my own consultant who, as you know, is based at Freeman on Ward 29 anyway. Now I know that my asthma is severe, and I know that it gets life-threatening, but there's something inescapable about the reality of it when you have an anaesthetist standing at the end of your bed exclaiming down the phone to the director of medicine that he has a patient with severe life-threatening asthma in desperate need of an ITU bed. It hits home. It's frightening ... maybe because the doctor's fear become apparent. I am so thankful for his persistence though and for all the help that he gave me. He called in another anaesthetist (from her home!) to go with me in the blue light transfer from A&E to the Freeman, although she first of all had to put an arterial line into my wrist. I have to say that I was a little scared by the fact that I needed an anaesthetist to escort me in the transfer as this is a sure sign that they're not 100% confident that I'm not going to make it across the city without crashing. I did make it, thankfully, and even more thankfully I just managed to avoid needing ventilating.
I had an x-ray done when I was in A&E, which other than the usual hyperinflation of asthmatic lungs showed a shadow near the bottom of my right lung. They gave me IV antibiotics in the hope that it was a patch of pneumonia, but they (and then ITU) said that they weren't convinced that it was infection as I didn't have a temperature. I had this uncertainty hanging over me for several days, and I have to say that I was quite scared. The last thing I needed was another problem with my lungs, particularly anything sinister such as cancer or fibrosis (which is a potential complication from one of the drugs that I take to treat my asthma - methotrexate). This has to have been the first time in my life that I've prayed to have pneumonia, but pray I did, and so did my friends. Eventually sputum samples revealed that I did have pneumonia, which thankfully meant that other more sinister causes for the shadow on my chest x-ray could be ruled out. Unfortunately the sputum sample also showed that the MRSA that I've had in my nose and throat for several years has now made it's way into my lungs. In theory this shouldn't cause me any more of a problem than it does in my nose and throat, but I know from a previous time of having MRSA in my lungs that it generally slows down the recovery process for me and makes my lungs more unstable/'twitchy'. This may, in part explain why it's taking me so long to recover this time.
So I made it to Ward 29 in the end, although I have to say that I was actually still quite unwell when I got there, and the staff looked a little surprised that I wasn't still in ITU. After another long, sleepless, breathless night, many nebulisers and hours longer of aminophylline later, things did at last begin to settle, and sometime in the afternoon of the day after I arrived on Ward 29 I was breathing well enough to sleep. I was woken at intervals for nebulisers and other medication, though mostly I stayed at least half asleep even then, but otherwise I slept almost continually for 4 days. I was still very tired and lethargic for several days afterwards, and I'm actually still fairly exhausted. I just feel wiped out by it, which I guess isn't all that surprising given the severity of the attack, the pneumonia, the length of time of my struggle to keep fighting for breath, the anxiety over the shadow on my x-ray and the general stress of being in a life-threatening situation, but I just don't feel right and it's getting me down a bit.
So now I'm home. I've been home for a couple of days, but too exhausted really to update my blog or do anything much at all besides plenty of sofa surfing. If I'm honest, I feel slightly traumatised by this most recent attack. I'm not sure why ... I mean, it's not like I haven't had severe life-threatening attacks before ... some attacks just seem to take more out of me than others, and this seems to have been one of them. I'm okay, and I'll be okay, but I am a bit tearful and have the acute stage of the attack running through my mind quite a lot.
Having said all that, I am immensely grateful to all who played their part in keeping me alive and in caring for me during my recovery. I thank them all whole-heartedly, and I thank my friends too for being there for me, particularly N and J, and for those who came to visit me on the ward.
I'm thankful that I survived again, however tough it was.
When we arrived at A&E I was taken straight into resus where there was a bit of a panic about getting a cannula into me, which was proving very difficult and took several people several attempts, but they were eventually successful. Thank God. They quickly gave me all the drugs they could, but they're limited in what they can give me as I'm allergic to a couple of the ones that are often given for severe asthma attacks, so all they can do is give me what they can and then wait and hope. Unfortunately things were taking rather a long time, I had silent chest, my oxygen levels were low on high flow oxygen, my blood pressure was occasionally going a little too low, my breathing rate was apparently 40 breaths per minute and my heart rate was somewhere around 160. All in all, I was really ill and not improving, so the A&E reg called in the anaesthetists, who were obviously worried and wanted me in ITU. There weren't any ITU beds in the hospital where A&E is, and there weren't any at the hospital where patients are usually transferred to from A&E. There was one at the Freeman, but because there's no emergency admissions unit there, and it was 'out of hours', the ITU reg at Freeman said that they couldn't take me. The A&E anaesthetist got onto his boss, who turned out to be the medical director on call, explained the situation, and got the message back that an essential bed couldn't be blocked in such circumstances and that I was to be admitted into Freeman's ITU under my own consultant who, as you know, is based at Freeman on Ward 29 anyway. Now I know that my asthma is severe, and I know that it gets life-threatening, but there's something inescapable about the reality of it when you have an anaesthetist standing at the end of your bed exclaiming down the phone to the director of medicine that he has a patient with severe life-threatening asthma in desperate need of an ITU bed. It hits home. It's frightening ... maybe because the doctor's fear become apparent. I am so thankful for his persistence though and for all the help that he gave me. He called in another anaesthetist (from her home!) to go with me in the blue light transfer from A&E to the Freeman, although she first of all had to put an arterial line into my wrist. I have to say that I was a little scared by the fact that I needed an anaesthetist to escort me in the transfer as this is a sure sign that they're not 100% confident that I'm not going to make it across the city without crashing. I did make it, thankfully, and even more thankfully I just managed to avoid needing ventilating.
I had an x-ray done when I was in A&E, which other than the usual hyperinflation of asthmatic lungs showed a shadow near the bottom of my right lung. They gave me IV antibiotics in the hope that it was a patch of pneumonia, but they (and then ITU) said that they weren't convinced that it was infection as I didn't have a temperature. I had this uncertainty hanging over me for several days, and I have to say that I was quite scared. The last thing I needed was another problem with my lungs, particularly anything sinister such as cancer or fibrosis (which is a potential complication from one of the drugs that I take to treat my asthma - methotrexate). This has to have been the first time in my life that I've prayed to have pneumonia, but pray I did, and so did my friends. Eventually sputum samples revealed that I did have pneumonia, which thankfully meant that other more sinister causes for the shadow on my chest x-ray could be ruled out. Unfortunately the sputum sample also showed that the MRSA that I've had in my nose and throat for several years has now made it's way into my lungs. In theory this shouldn't cause me any more of a problem than it does in my nose and throat, but I know from a previous time of having MRSA in my lungs that it generally slows down the recovery process for me and makes my lungs more unstable/'twitchy'. This may, in part explain why it's taking me so long to recover this time.
So I made it to Ward 29 in the end, although I have to say that I was actually still quite unwell when I got there, and the staff looked a little surprised that I wasn't still in ITU. After another long, sleepless, breathless night, many nebulisers and hours longer of aminophylline later, things did at last begin to settle, and sometime in the afternoon of the day after I arrived on Ward 29 I was breathing well enough to sleep. I was woken at intervals for nebulisers and other medication, though mostly I stayed at least half asleep even then, but otherwise I slept almost continually for 4 days. I was still very tired and lethargic for several days afterwards, and I'm actually still fairly exhausted. I just feel wiped out by it, which I guess isn't all that surprising given the severity of the attack, the pneumonia, the length of time of my struggle to keep fighting for breath, the anxiety over the shadow on my x-ray and the general stress of being in a life-threatening situation, but I just don't feel right and it's getting me down a bit.
So now I'm home. I've been home for a couple of days, but too exhausted really to update my blog or do anything much at all besides plenty of sofa surfing. If I'm honest, I feel slightly traumatised by this most recent attack. I'm not sure why ... I mean, it's not like I haven't had severe life-threatening attacks before ... some attacks just seem to take more out of me than others, and this seems to have been one of them. I'm okay, and I'll be okay, but I am a bit tearful and have the acute stage of the attack running through my mind quite a lot.
Having said all that, I am immensely grateful to all who played their part in keeping me alive and in caring for me during my recovery. I thank them all whole-heartedly, and I thank my friends too for being there for me, particularly N and J, and for those who came to visit me on the ward.
I'm thankful that I survived again, however tough it was.
Sunday, 13 January 2008
MRSA
I wrote this a little while ago on one of the many occasions that I've been an in-patient. I have, for several years now, been MRSA positive, though luckily I have not had sepsis from it (although I have had sepsis from another nasty bug - enterobacter claocae). Because of my status of being MRSA positive I am, what they call, barrier nursed, meaning that I get a room on my own (there has to be an upside to having MRSA) and whenever anyone other than my visitors come into the room they have to put on apron and gloves. The following is a little snippet of something that might one day turn into something longer, but it's about the experience of being MRSA positive and that isolation.
I have an invisible room-mate – a companion with whom I have nothing in common, except the space we occupy. Being invisible she is very easy to accommodate, so I put her up and ignore the bad press she gets. She is reputed for beating the frail and elderly, attacking vulnerable children and further wounding the already wounded. She is a cowardly monster in her choice of victim.
She has done me no harm, though we do not interact much and, for the most part, I forget that we share this space. It is only when medics and nurses, domestics and phlebotomists enter my room, clad in their protective armour of plastic aprons and latex gloves, that I remember I am not really alone. Only then am I reminded of her potential violence.
It is hard to imagine my silent companion as a killer, despite hiding in her anonymity as Mrs A. For all who do not live in this room with her however, proceedings must be undertaken with extreme caution, lest she escape and run rampant in the world beyond my door.
For now she can stay with me here, not that I have a choice as she holds me hostage – both of us in this isolation together.
I have an invisible room-mate – a companion with whom I have nothing in common, except the space we occupy. Being invisible she is very easy to accommodate, so I put her up and ignore the bad press she gets. She is reputed for beating the frail and elderly, attacking vulnerable children and further wounding the already wounded. She is a cowardly monster in her choice of victim.
She has done me no harm, though we do not interact much and, for the most part, I forget that we share this space. It is only when medics and nurses, domestics and phlebotomists enter my room, clad in their protective armour of plastic aprons and latex gloves, that I remember I am not really alone. Only then am I reminded of her potential violence.
It is hard to imagine my silent companion as a killer, despite hiding in her anonymity as Mrs A. For all who do not live in this room with her however, proceedings must be undertaken with extreme caution, lest she escape and run rampant in the world beyond my door.
For now she can stay with me here, not that I have a choice as she holds me hostage – both of us in this isolation together.
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