I'm home. I got home on Tuesday evening after a lengthy wait for some of my meds that had inadvertently been left by the pharmacy hatch rather than being sent up to the ward. They'd been ready for three hours when they were finally located and then collected. Oh well, such is life. I never expect a quick getaway from hospital so I just get on with the wait and while away the time (or should that be 'wile'?). Anyway, I got home in the end and it's great to be here. The cat has been ever so cuddly >^..^< It's wonderful to be in my own surroundings with my own things and no hospital clatter :o) The only thing is that I'm exhausted and finding it hard work being at home too. My lungs aren't fairing too badly given how recently I've been discharged. The main problem is the anaemia and the iron. It's wonderful that the pharmacist managed to find a preparation of iron that I'm not allergic to, but I am having other side-effects - gastrointestinal effects that are getting me quite dehydrated, even though I'm trying to drink loads of water. I'm told these effects should wear off fairly soon, but in the meantime it's not pleasant and isn't helping me achieve a general feeling of wellness. And there's the anaemia itself. My Hb was still around 8 when I was discharged, which was a bit controversial, but as I have a suppressed immune system, and I'm a sitting target for infection the longer I'm in hospital, it was thought that I'd probably be better off at home. I agree, except that I don't feel great and I can't do very much of anything ... even staying upright is a bit of a challenge at times so I'm spending a lot of time sofa surfing and thinking about doing some study to catch up, but I don't have the mental energy to concentrate :o( I must get my head around some study at some point though, because I'm getting quite behind with my course now. I'm hoping that the gastro effects of the iron will soon sort themselves out, and that then I'll feel a bit better in that respect. The iron will take several weeks to have full effect on my Hb (so I'm told), but I should hopefully begin to feel some benefit much before then. I have to go for blood tests at my GP surgery the week after next to check that my Hb is starting to come up, and if it isn't then they're to look closer into the cause of my anaemia, but I sincerely hope that things are significantly improved.
One of the very disappointing things of this whole situation is that there's no way that I'm going to be up to doing my gym marathon on 25th. I know it was an (over) ambitious date to set in the first place, but I needed to set a new date when I did ... and now I'm going to need to set another one. This is something I desperately want to do, and I will do, but I'm not going to be stupid and do myself in in the process. I want to do it before Christmas, and I want to do it before the pre-Christmas craziness gets too crazy, so I'm now proposing to do it on 15th December. This gives me four and a half weeks from now to get back on track with health and fitness, and is hopefully more realistic than 25th November. I am disappointed, but I know that I'll do it, and in the end there'll be an even greater sense of achievement. Oh, and it gives people more time to sponsor me, or donate through my Just Giving page.
So yeah, a bit of a mix - it's great to be home. It's great to have my creature comforts and be with my little black creature (the cat). It's not so great feeling not so great and being so worn out. I'll press on and come through in the end, and while I wait I'll snuggle up in my cosy new slanket that I'm loving :o)
Showing posts with label Just Giving. Show all posts
Showing posts with label Just Giving. Show all posts
Friday, 13 November 2009
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
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
Saturday, 29 August 2009
Movement
I'm back home. I got home on Wednesday night after battling for an hour with the Edinburgh traffic before managing to make it onto the A1, and then crawling my way down a stretch of the A1 where they were doing roadworks and taking us down in convoy to ensure a 10 mph speed limit. I eventually made it back around 10.30pm, and of course then it took me a while to wind down after the drive before I could sleep, so when it came to getting up for my hospital appointment on Thursday I wasn't too impressed with it being morning. I managed it though ... not that it was exactly revelatory, and there haven't been any magnificent advances in the treatment of severe asthma in the past three weeks, so we spent most of the time talking about my consultant's holiday to Spain and his past holidays to Greece when he liked to go island-hopping 'as a youngster' :o) However, I did mention the fainting to him, which I thought was a good move as it's now happened a couple of times, and there've been other times when I've felt faint but haven't actually passed out. He decided to take blood to check my Hb again, which I know is the right thing to do, but always seems a bit paradoxical to take haemoglobin out of me when I haven't got enough of it to begin with ;oP I'm guessing he'll write to the GP with any results.
I had a great time in Edinburgh and very much enjoyed all the things I went to at the Fringe Festival and the Book Festival. Apart from the passing out thingumy I think I'm doing a bit better physically now too and I'm slowly getting some strength back. Next on the agenda then is to get myself back to the gym (supervised exercise/physio) and get back to training for my Big Wheeze Gym Marathon. I wrote about this idea some time ago, but I have now (at last!) managed to get sorted with the info I wanted about the Ward fund and donating through Just Giving. I'm thinking of maybe setting up a temporary blog, which I'll link to from this one, to track my progress, but in the meantime, if you want to donate and/or read more about the event and what Ward 29 at Freeman Hospital does then you can do so at my Just Giving page All sponsorship is valuable and very welcome ... and now that I've set up the page and advertised it to the world then there's no backing out. Eek! Here's to my craziness, planned for 30th October 2009!
I had a great time in Edinburgh and very much enjoyed all the things I went to at the Fringe Festival and the Book Festival. Apart from the passing out thingumy I think I'm doing a bit better physically now too and I'm slowly getting some strength back. Next on the agenda then is to get myself back to the gym (supervised exercise/physio) and get back to training for my Big Wheeze Gym Marathon. I wrote about this idea some time ago, but I have now (at last!) managed to get sorted with the info I wanted about the Ward fund and donating through Just Giving. I'm thinking of maybe setting up a temporary blog, which I'll link to from this one, to track my progress, but in the meantime, if you want to donate and/or read more about the event and what Ward 29 at Freeman Hospital does then you can do so at my Just Giving page All sponsorship is valuable and very welcome ... and now that I've set up the page and advertised it to the world then there's no backing out. Eek! Here's to my craziness, planned for 30th October 2009!
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