Last week it was my mum's birthday and in celebration she had a week away, hiring two cottages in North Yorkshire for the family to congregate at. We all went - My brother M with his wife N and two boys O and D, my brother C and his new wife S (they were married only four weeks ago in Cambridgeshire - a very lovely time), my step-dad J, and myself. Everyone else went from Saturday to Saturday, but I knew that although it'd be lovely it'd also be tiring and it'd be daft to overdo things, so I only went from Wednesday to Saturday. I did indeed have a very lovely time, and it was great to be with everyone again, even though we had all recently been together at C and S's wedding. Weddings are busy and there's often little opportunity to spend quality time with those you'd like to, and although C and S's wedding was small it was typically busy. I only met S for the first time the day before the wedding as I'd been away in Somerset when she and C had been up to meet and stay with my dad and step-mum back in September, so it was lovely to get to know S a bit better at Mum's birthday week away.
The cottages we stayed at were lovely. They were on a working farm not far from Thirsk, but with the feeling of being pretty much in the middle of nowhere. From the front of the cottages we had a great view of the Kilburn White Horse over the farm's sheep fields that were abound with joyful spring lambs. There were two lambs in a small pen in a barn just off one of the fields. One of them had been rejected by its mother; the mother of the other had died, so both were being hand-reared and the farmer had told us it was fine for us to take my nephews to see them, which resulted in 18 month old D acquiring the word lamb into his vocabulary, and very sweetly waving and saying, 'Bye bye lamb' when we left them. The whole place was very child-friendly with a huge field for kids to run around in, and also with a big climbing frame with slide, a set of swings, and an enormous trampoline. O and D particularly liked the trampoline, even distracting O from the slide, which he's usually a real fiend for. The cottages/farm also have an indoor swimming pool and sauna, which the boys loved, going for a swim every afternoon. I would have liked to join them and the others in the pool, but I didn't think it'd be terribly sensible while the POTS is so unstable and I'm still passing out so much; and the sauna would have been an even worse idea as the heat could affect my BP. I tried to make the most of the times when the others were at the pool though by doing some study on the Thursday afternoon (I had an assignment due), and having a very needed sleep on the Friday afternoon. Friday was my mum's actual birthday and we all went out to The Hare Inn - a 13th Century pub in nearby Scawton - for a meal. I had to take my own food, of course, but the pub were fine with that, and when it came to puddings we even found that there was one they did that was Becky-friendly - Lemon Possit. It was delicious, and it was wonderful to be able to enjoy eating out somewhere other than Peppy's (even though Peppy's are great and ever so good to me), although it did cause some anxiety for the rest of the afternoon in case I had a delayed reaction to it, but there was nothing in it that was likely to kill me, and all was well :o) After the meal Mum, J, C, S and I all went to Rievaulx Abbey. It's a place that W and I had tried to go to earlier in the year, but it was out of English Heritage season, so we'd ended up going to a nearby National Trust place instead. It was nice to get to have a look around Rievaulx Abbey at last, and it really is quite spectacular. I was, however, utterly exhausted afterwards and was grateful of the chance to have a fairly lengthy afternoon sleep back at the cottages while the others went swimming.
I think it was the Thursday afternoon when I was doing a bit of study when C came in for a chat. I don't get to see C very often, because he lives in Cambridgeshire and is very busy with work without much holiday. C's had a lot to contend with over the years, and has led the most bizarre life of anyone I've known. He's overcome a huge amount though, and has miraculously got his life back on track when it could so very easily have gone so very, very wrong. He's the person who I admire most in all the world, and it was great to have the opportunity to talk with him. He came into the cottage clearly knowing that I was alone and he wanted to talk a bit about our first step-mum K, who was a very odd lady and a very destructive force in our family. She died in March 1996 from skin cancer, and despite her complexities and the negativity that we all (my brothers and I) felt towards her, I was upset when she died and this is what C wanted to talk about. For all that he and S are now married, they've only actually been together for about a year, and C thinks that S is having difficulty in understanding why he is having trouble expressing the very complex relationship/situation/person that was K. He's not alone though - it is/was very complicated. K clearly had some mental health issues that weren't dealt with or even properly recognised by those immediately around her (or herself), and I've already mentioned that she was a destructive force ... but her extreme immaturity led to some fun times too, and that, for me, is where the confusion has been. How do you marry together the person who instigates holiday activities that feed the child's soul with the person who has inane jealousy of your mother for 'getting' your father first, confuses you with your mother and consequently frequently treats you atrociously, and who tears the family apart with hate and a degree of insanity? Very confusing for anyone, but especially when you're a child ... and for all that I was almost 22 when K died the confusion was unresolved, and maybe some of it always will be, although it matters less these days ... it has less immediate effect or reason to cause difficulty. C was younger though, and with other complicating factors for him I think it was even more difficult for him to comprehend, so it's not very surprising that he's having trouble expressing it to S. I've been pleased that he felt able to talk to me a little about it, and I've said that if it'd be helpful then I'm more than happy to talk through some of it with S there too. I'm not sure if he'll take me up on the offer, but it's there. I've found myself thinking about it all quite a lot since our chat though, and have talked about it myself with Mum too, who of course has a different perspective on the whole situation, so it's interesting discussing some of it with her too.
Families are weird things, aren't they? Kind of closed entities, yet so vulnerable to change too ... which can have both positive and negative consequences...
Sunday, 9 May 2010
Friday, 23 April 2010
The ups and downs and ins and outs
Phew, it's been a bit of time of medical things and hospital appointments lately. Last week I went back to the falls and syncope clinic at RVI for another tilt table test, but this time 'in a hoover back', as it was described to me at my previous appointment. It turned out not to be a hoover bag as such, but more of a vacuum chamber that covered my lower body and came up to somewhere around the bottom of my ribs. The test started with me lying flat for five minutes or so, with my bp and heart rate being constantly monitored, and then the bed was tilted to about 70 - 80 degrees. The vacuum was kept off for the first ten minutes, so I was just standing there (the bed has a footplate), although I felt incredibly nauseous and kept retching. The almost-upright bed was at such a height that I was towering above the nurses and the consultant and I imagined that I was going to throw up all over the tops of their heads. Thankfully I didn't, and I'm sure they're even more thankful! Although the nausea had started only a few minutes into the test, I lasted for a total of seventeen minutes, with the vacuum having been turned on after ten minutes. The last thing I remember saying was, 'I think I'm going to go.' I was right. I passed out and came around with the bed flat, the vacuum chamber removed, my legs up on a beanbag and the consultant wiggling my feet. It's bad enough fainting when I'm on my own or even when there are other people around who are just getting on with life, but it's another thing having people stand around, watching, and waiting for you to pass out. It's also not so great when those who have just seen you pass out are really pleased that you have done. The consultant was just a bit too happy about it for my liking ;oP Anyway, he said that my blood pressure 'went ridiculously low, but it was conclusive.' I asked about my BP, and was told that it had gone from 128/70 - text book normal - to 20/0 - barely a BP at all! So the conclusion is that as well as POTS, I have vasovagal syncope. Now the medication I was on for the POTS - ditiazem - has the potential to lower BP so it obviously wasn't a good idea that I stay on it, and it's been changed to ivabradine, another med really designed for angina. I've started on a very low dose, but it's planned that this will be increased in another couple of weeks time, so hopefully I'll see a bit more improvement in my heart rate then, because at the moment it's going faster than it was when I was on the diltiazem, though still slower than it was (most of the time) before any medication. So that's where I'm up to ... or down to ... with the falls and syncope clinic, and I'm due back in 11 or 12 weeks.
On Wednesday I managed to dislocate my right shoulder. I don't recommend it. It hurts. I managed to get it back in myself by holding my right wrist with my left hand and swinging my arms at a weird kind of angle. I just did what it felt like needed to be done, and thankfully it worked, though the pain of it going back in caused me to pass out, but I was expecting this as I did the same thing about 15 years ago, so I was standing next to the bed while I did this so that I had a soft landing. It was still very sore and movement was restricted, but I thought I'd see how things went. In the end though I went to A&E to get it checked out and x-rayed. I'm pleased to say that it was fully back in place and in the right place, and that there was no fracture. The nurse was about to put a sling on me, but I wondered if my shoulder was likely to better more quickly if I keep using it. The nurse that to an extent that's true, but to keep the sling because I'd probably find that I need it to rest my arm for several days at least, and it'll take about six weeks for my shoulder to heal properly :o( I did take the sling, and I'm glad that I did because my shoulder's been very painful and resting it has helped a little, although it's very inconvenient, especially as I'm right handed. Anyway, I'm using it a lot and my asthma consultant yesterday said that he'd recommend using the sling all the time for a week or so, but then start mobilising it a bit more so that it doesn't seize up. That's what I'm doing.
As I've just mentioned, yesterday I had an appointment with Dr H, and of course the main thing on my mind for this appointment was the result of any conversations he'd had with Dr G about the possibility of portacath, as I talked about here. Dr H said he'd spoken to both Dr G and Dr K - an ITU consultant who knows me very well, and that initially both were taken aback by the idea, but when they went on to discuss it further they could see the positives and all have decided that it can happen. They do all have their concerns, most importantly my MRSA positive status as the portacath obviously goes straight into the bloodstream so any infection is potentially extremely serious. There is one proviso, and that is that the port is never used in A&E, because they're not trained in using them. It can of course be used on ward 29 and also on emergency admissions at RVI as one of the nurses from the respiratory ward there (wd 52) can come, and they're as experienced as the staff on 29 because they deal with a lot of CF patients. Dr H had been going to suggest that the op be done very soon, but we're having to wait now until my shoulder is better :o( Apparently ports are usually put in the left side, but sometimes they have to go in the right if the docs can't get into the left well enough, and Dr H didn't want to get me all geared up for it only to have to postpone it because we couldn't move my arm into a suitable position. He said he'd email Dr G and let him know what the plan is, and that it'll likely happen in July/August. I'm disappointed that it's being delayed by my shoulder (though I understand and agree with the argument), but I'm 'pleased' that the portacath is going ahead ... pleased in an odd kind of way, because it's not something that one really wants to have to be pleased about.
I told you in my Head-spin post that the ophthalmologists have agreed to remove my cataracts, but that by the time my appointment had finished all the 'dates people' had gone home, because the clinic was running three hours late! I was told that I'd get a letter in the post with an appointment, but I still haven't heard anything so I phoned them up today. They still can't give me a date as I'm down to have the op done by the consultant. I don't really understand why this means they can't yet give me a date, but they did say that it's likely to be mid-June that I have the op. Although this is a couple of months wait it actually fits in quite well with other things that are going on, like my OU course that's due to finish on 27th May, and a few days away with W in the first week of June. There might even be a little bit of recovery time between the first cataract op, the portacath op, and then the second cataract op.
Off on a tangent of ins and outs... I can't drive for a few days because of my shoulder so I had to get a taxi to my appointment with Dr H yesterday. I ordered the taxi at 8:40 thinking this would give me plenty of time to get to my 9am appointment. I went to wait for it outside, sitting on the garden wall, and I waited, and I waited, and I waited some more. I was getting a little frustrated when it hadn't turned up by 8:55am and was about to phone the taxi firm to ask where the cab was when the car pulled in and flashed its lights. I got into the car, and said where I wanted to go. The driver looked at me. She looked rather scared. Then I realised that I wasn't sitting in a taxi, but in a random woman's car! 'You're not a taxi, are you?' I said. She shook her head. 'Um, okay ... I'll be getting out, then...' I mumbled in a very embarrassed hurry as I clambered out and attempted to appear unruffled. I ambled back to the wall, sat down again, and realised that the poor, now traumatised lady, had pulled in and flashed her lights to allow another car to pass. Oops.
On Wednesday I managed to dislocate my right shoulder. I don't recommend it. It hurts. I managed to get it back in myself by holding my right wrist with my left hand and swinging my arms at a weird kind of angle. I just did what it felt like needed to be done, and thankfully it worked, though the pain of it going back in caused me to pass out, but I was expecting this as I did the same thing about 15 years ago, so I was standing next to the bed while I did this so that I had a soft landing. It was still very sore and movement was restricted, but I thought I'd see how things went. In the end though I went to A&E to get it checked out and x-rayed. I'm pleased to say that it was fully back in place and in the right place, and that there was no fracture. The nurse was about to put a sling on me, but I wondered if my shoulder was likely to better more quickly if I keep using it. The nurse that to an extent that's true, but to keep the sling because I'd probably find that I need it to rest my arm for several days at least, and it'll take about six weeks for my shoulder to heal properly :o( I did take the sling, and I'm glad that I did because my shoulder's been very painful and resting it has helped a little, although it's very inconvenient, especially as I'm right handed. Anyway, I'm using it a lot and my asthma consultant yesterday said that he'd recommend using the sling all the time for a week or so, but then start mobilising it a bit more so that it doesn't seize up. That's what I'm doing.
As I've just mentioned, yesterday I had an appointment with Dr H, and of course the main thing on my mind for this appointment was the result of any conversations he'd had with Dr G about the possibility of portacath, as I talked about here. Dr H said he'd spoken to both Dr G and Dr K - an ITU consultant who knows me very well, and that initially both were taken aback by the idea, but when they went on to discuss it further they could see the positives and all have decided that it can happen. They do all have their concerns, most importantly my MRSA positive status as the portacath obviously goes straight into the bloodstream so any infection is potentially extremely serious. There is one proviso, and that is that the port is never used in A&E, because they're not trained in using them. It can of course be used on ward 29 and also on emergency admissions at RVI as one of the nurses from the respiratory ward there (wd 52) can come, and they're as experienced as the staff on 29 because they deal with a lot of CF patients. Dr H had been going to suggest that the op be done very soon, but we're having to wait now until my shoulder is better :o( Apparently ports are usually put in the left side, but sometimes they have to go in the right if the docs can't get into the left well enough, and Dr H didn't want to get me all geared up for it only to have to postpone it because we couldn't move my arm into a suitable position. He said he'd email Dr G and let him know what the plan is, and that it'll likely happen in July/August. I'm disappointed that it's being delayed by my shoulder (though I understand and agree with the argument), but I'm 'pleased' that the portacath is going ahead ... pleased in an odd kind of way, because it's not something that one really wants to have to be pleased about.
I told you in my Head-spin post that the ophthalmologists have agreed to remove my cataracts, but that by the time my appointment had finished all the 'dates people' had gone home, because the clinic was running three hours late! I was told that I'd get a letter in the post with an appointment, but I still haven't heard anything so I phoned them up today. They still can't give me a date as I'm down to have the op done by the consultant. I don't really understand why this means they can't yet give me a date, but they did say that it's likely to be mid-June that I have the op. Although this is a couple of months wait it actually fits in quite well with other things that are going on, like my OU course that's due to finish on 27th May, and a few days away with W in the first week of June. There might even be a little bit of recovery time between the first cataract op, the portacath op, and then the second cataract op.
Off on a tangent of ins and outs... I can't drive for a few days because of my shoulder so I had to get a taxi to my appointment with Dr H yesterday. I ordered the taxi at 8:40 thinking this would give me plenty of time to get to my 9am appointment. I went to wait for it outside, sitting on the garden wall, and I waited, and I waited, and I waited some more. I was getting a little frustrated when it hadn't turned up by 8:55am and was about to phone the taxi firm to ask where the cab was when the car pulled in and flashed its lights. I got into the car, and said where I wanted to go. The driver looked at me. She looked rather scared. Then I realised that I wasn't sitting in a taxi, but in a random woman's car! 'You're not a taxi, are you?' I said. She shook her head. 'Um, okay ... I'll be getting out, then...' I mumbled in a very embarrassed hurry as I clambered out and attempted to appear unruffled. I ambled back to the wall, sat down again, and realised that the poor, now traumatised lady, had pulled in and flashed her lights to allow another car to pass. Oops.
Friday, 16 April 2010
Studies
In amongst all the health stuff I'm still doing my studies with the Open University, and in fact this module (Children's Literature) is almost over. Only six weeks left until the End of Course Assessment is due in! And this is the last course that counts towards the classification of degree I'll get as the last course I have left to do is actually the foundation course that I didn't do at the beginning of it all, and foundation courses are only pass or fail. Presuming I pass my current course (which I will unless something goes terribly, terribly wrong with the ECA) and the foundation course (which I'm sure I will) then I'm guaranteed at least a 2:1 in my degree, and that's if I get a low Third on the children's literature course. Anything above a low Third on this course and I get a First in my degree ... and so far I'm heading for a First in this module :o) There are no guarantees though so I'm not letting up the pressure on myself. Yup, I'm a glutton for punishment.
I've been wondering what to do after I get my degree, given that I can't work because of my health and that I'm loving the fact that I'm finally achieving my academic potential. I had been planning on going on to do an MA in Creative Writing with the Open University, which was due to start in October 2011, but the OU have withdrawn this proposed course so I was a bit stuck and had to start thinking again. The other complicating factor is that I've found the children's literature course so fascinating that I've been wondering about taking my studies with that further, and I know from a one day conference on children's literature that I attended at Newcastle University that they (Ncl Uni) do an MLitt in English Literature specialising in Children's Literature. I spoke to my current OU tutor about my options, as he's been encouraging me to do further study in children's literature. It was a very interesting discussion that gave me even more to think about, but he thought that while the OU course in CL is a good course there are holes in its presentation of the theorists that could hamper MLitt study, so if I were to do CL at postgraduate level then I'd be better off looking for a taught MA (MLitts are self-directed research programmes), probably by distance learning. And then the doubts set in about whether or not I wanted to drop the idea of doing creative writing at postgrad level... Oh decisions, decisions. Still, there's plenty of time to think about it as I still have another year of undergraduate study to do, but as funding will be an issue and I'll need to apply for grants etc to cover the fees, then I do need to start thinking about it ... that's what I was thinking anyway...
I went on with my investigations into future study options and ended up making an appointment with one of the English professors at Newcastle University to discuss some of my options. It was most productive. It made my mind up for me. And despite the fact that I still have a year of undergraduate study to go, and that I haven't yet put in an application for postgraduate studies, I've been verbally accepted to start a Postgraduate Certificate in Creative Writing at Newcastle University ... starting this September - i.e. while I'm still doing my undergraduate studies! I'll be doing the PGC part-time to allow for the OU study I have left to do, and of course to allow for my health problems, but in the second year I may well top-up some of the study time with further postgraduate credits. I know that I'll go on from the PGC to either an MA or an MLitt, but I don't have to make my mind up at this point, and I also don't yet have to decide whether I go for creative writing or children's literature as the PGC can, apparently, contribute to either. Perfect! I rather suspect that I'll go on to further creative writing, but we'll see. In the meantime, I'm really pleased to have sorted out what I'm going to do next; amazed that I have a verbal acceptance on the PGC before putting in an application and based on my current OU achievements and one informal meeting with one of the English professors at Newcastle University; and a little bit scared about starting my postgraduate studies while I'm still an undergraduate. Now I just need to remember to put in my official application form, otherwise none of it's going to happen this year!
I've been wondering what to do after I get my degree, given that I can't work because of my health and that I'm loving the fact that I'm finally achieving my academic potential. I had been planning on going on to do an MA in Creative Writing with the Open University, which was due to start in October 2011, but the OU have withdrawn this proposed course so I was a bit stuck and had to start thinking again. The other complicating factor is that I've found the children's literature course so fascinating that I've been wondering about taking my studies with that further, and I know from a one day conference on children's literature that I attended at Newcastle University that they (Ncl Uni) do an MLitt in English Literature specialising in Children's Literature. I spoke to my current OU tutor about my options, as he's been encouraging me to do further study in children's literature. It was a very interesting discussion that gave me even more to think about, but he thought that while the OU course in CL is a good course there are holes in its presentation of the theorists that could hamper MLitt study, so if I were to do CL at postgraduate level then I'd be better off looking for a taught MA (MLitts are self-directed research programmes), probably by distance learning. And then the doubts set in about whether or not I wanted to drop the idea of doing creative writing at postgrad level... Oh decisions, decisions. Still, there's plenty of time to think about it as I still have another year of undergraduate study to do, but as funding will be an issue and I'll need to apply for grants etc to cover the fees, then I do need to start thinking about it ... that's what I was thinking anyway...
I went on with my investigations into future study options and ended up making an appointment with one of the English professors at Newcastle University to discuss some of my options. It was most productive. It made my mind up for me. And despite the fact that I still have a year of undergraduate study to go, and that I haven't yet put in an application for postgraduate studies, I've been verbally accepted to start a Postgraduate Certificate in Creative Writing at Newcastle University ... starting this September - i.e. while I'm still doing my undergraduate studies! I'll be doing the PGC part-time to allow for the OU study I have left to do, and of course to allow for my health problems, but in the second year I may well top-up some of the study time with further postgraduate credits. I know that I'll go on from the PGC to either an MA or an MLitt, but I don't have to make my mind up at this point, and I also don't yet have to decide whether I go for creative writing or children's literature as the PGC can, apparently, contribute to either. Perfect! I rather suspect that I'll go on to further creative writing, but we'll see. In the meantime, I'm really pleased to have sorted out what I'm going to do next; amazed that I have a verbal acceptance on the PGC before putting in an application and based on my current OU achievements and one informal meeting with one of the English professors at Newcastle University; and a little bit scared about starting my postgraduate studies while I'm still an undergraduate. Now I just need to remember to put in my official application form, otherwise none of it's going to happen this year!
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.
Sunday, 28 February 2010
Beyond a joke
This isn't funny. It really isn't funny. I think, no, I'm certain that I have bronchitis. I've had it many times in the past so I know what it feels like and it feels like this. I'm bubbling away and my lungs are being ever so musical, and they have that itchy, scratchy, rubby, irritated feel about them, and I'm coughing like a heavy smoker, and I feel rubbish. My nebs give me some relief, but only about 20 minutes and then I'm back to where I started. I should probably be in hospital. I nearly gave in and called an ambulance last night, but in the end I couldn't face the prospect of the post-admission process of being carted around the city from hospital to hospital, so I'm hanging on until tomorrow when I can contact Ward 29 and go directly there ... although I'm still hoping that I can avoid hospital all together. I'm probably being naive.
I'm so, so sick of this. It's been one thing after another and I'm knacked. I would dearly love some respite from it - from the ceaseless bouncing from one illness to the next, and from feeling so unwell so much of the time. And while breathing is such a struggle I can't even get any proper rest. I'm exhausted.
I know that if I were a spectator to myself then I'd be urging myself to go to hospital sooner rather than later, and that I really ought to be going sometime round about now, but I just can't face the emergency admissions unit at RVI. While I was lying/sitting in bed last night I was saying to myself, 'This is stupid. Just call an ambulance. You would if it were anyone else,' but I couldn't do it. I thought about calling the out of hours doctor, but I knew that they'd just send me to hospital and I'd end up at the RVI's EAU anyway. If it gets absolutely desperate then I will give in before tomorrow, but right now I'd prefer to take the risk of staying at home ... maybe it's a stupid risk ... most likely it is ... part of me doesn't want to take the risk, but after last time on EAU's attached ward I just cannot face the prospect of that again. Of course, there's the possibility that even if I wait until tomorrow and contact Ward 29 that they won't have a bed, and then I'll be in the position of knowing that I have no choice but to end up in EAU until 29 have a bed. I hate this.
Am I rambling? I feel like I'm rambling. I feel like I'm not making much sense. I'm just fed up with all this and the situation I'm in. So very fed up and not feeling at all well.
I'm so, so sick of this. It's been one thing after another and I'm knacked. I would dearly love some respite from it - from the ceaseless bouncing from one illness to the next, and from feeling so unwell so much of the time. And while breathing is such a struggle I can't even get any proper rest. I'm exhausted.
I know that if I were a spectator to myself then I'd be urging myself to go to hospital sooner rather than later, and that I really ought to be going sometime round about now, but I just can't face the emergency admissions unit at RVI. While I was lying/sitting in bed last night I was saying to myself, 'This is stupid. Just call an ambulance. You would if it were anyone else,' but I couldn't do it. I thought about calling the out of hours doctor, but I knew that they'd just send me to hospital and I'd end up at the RVI's EAU anyway. If it gets absolutely desperate then I will give in before tomorrow, but right now I'd prefer to take the risk of staying at home ... maybe it's a stupid risk ... most likely it is ... part of me doesn't want to take the risk, but after last time on EAU's attached ward I just cannot face the prospect of that again. Of course, there's the possibility that even if I wait until tomorrow and contact Ward 29 that they won't have a bed, and then I'll be in the position of knowing that I have no choice but to end up in EAU until 29 have a bed. I hate this.
Am I rambling? I feel like I'm rambling. I feel like I'm not making much sense. I'm just fed up with all this and the situation I'm in. So very fed up and not feeling at all well.
Thursday, 25 February 2010
Testing times
The last couple of weeks have been something of a challenge, which is part of why I haven't updated my blog.
It started with a standard review appointment with my asthma consultant, who described my asthma to a medical student as 'terrible' and then made the usual comment that there's nothing more we can do at the moment. In a last ditch attempt to try anything we thought we'd maybe give tiotropium a go seeing as it's probably the last thing we haven't tried to date. This would have to be in place of the ipratropium nebules as they're very closely related drugs and there's a significant increase of risk of side-effects such as glaucoma if used in conjunction. It was a gamble, but a gamble worth taking. It didn't work out though, and although it would've been nice to have been able to cut down on the time I spend using the nebuliser, and the generally quantity of medication I take, my lungs didn't like the change and began to go downhill. My consultant has gone on holiday for a couple of weeks so wasn't around when I called his secretary to explain the situation and get the official say-so to go back to my old meds, but she spoke to one of my consultant's colleagues and they've given that say-so.
The day after my appointment with the asthma consultant I had an appointment with my POTS consultant at the falls and syncope service. I had a huge number of questions for Dr N, and managed to get through most of them, although some of the time was taken up with questions to and from three medical students who were sitting in on the consultation. On the whole, I don't mind med students coming in, because they have to learn and they're going to learn best by having patient contact. There's been one occasion I can think of where I've requested a preference not to have a student present, but that was because I'd wanted to discuss a sensitive issue that might have needed some explanation to the student, and I didn't want to go into it. Anyway, this time I had no objection and it meant that the three third years learnt a little about POTS. As I'm still passing out a lot Dr N decided that it'd be a good idea to get a tilt table test done, and before I knew it I found myself being strapped to a bed and tilted to an angle of 70 degrees. The plan had been to leave me for thirty minutes and if I didn't pass out by then they'd give me GTN (this is supposed to make you more sensitive to fainting, or something), but I'm allergic to nitrites so I can't have GTN so they changed the plan to a forty minute test without GTN. After 6 minutes I was feeling really nauseous. After 13 minutes I was throwing up and almost out. At 13 1/2 minutes the test was stopped. In addition to the POTS diagnosis they've now also given me the vague diagnosis of vasovagal syncope, which basically means that I faint, so it's not a very informative diagnosis really. However, because I didn't actually reach the point of passing out, but was only very, very close to it, Dr N wants to repeat the tilt table test. I'm not looking forward to it, especially as, to use Dr N's description, next time they'll 'put me in a hoover bag'!!! Er, great... Apparently this will reduce the test time from 40 minutes to 20 minutes, but to be honest I can't see the use in this seeing as I only lasted 13 minutes last time.
The following few days were doctor-/appointment-free and on the Monday evening W and I went to the theatre to a fantastic production of Pride and Prejudice at Theatre Royal. It was great fun, and the company (Theatre Royal Bath Productions) really brought out the humour in the story. We both really enjoyed it, but it turned out that we also both picked up a cold while we were there. I had to do what I could to ignore feeling coldy and grotty and the ensuing lung-grumpiness as I had another late essay to write for my OU course. I eventually got it done and sent off into the ether towards my tutor on the evening of Wednesday last week, but then proceeded to feel grottier with the cold. Miserable.
The next day I had an appointment for a sight test at the optician - the 'usual' optician, not the hospital optician I go to every six months. My prescription has changed again (though not by much), but I'm not getting new lenses just at the moment because the optician says she thinks my cataracts are now at a stage where they need removing. Things have been getting cloudier/mistier and the light scattering has been getting worse, so I knew that the cataracts were getting denser even if maybe not all that much bigger. I know the cataracts themselves are still pretty small, but they're dead central so interfere with vision significantly, and I've been aware that the one in the right eye is definitely getting worse. The optician wrote a letter to my GP suggesting a re-referral to the opthalmologist and I now have an appointment with them for 1st April. The thing is that last time i saw the opthalmologist she said that she'd be extremely reluctant ever to operate on my cataracts because of the risk of the anaesthetic on my asthma. She said that there's even a risk using local anaesthetic so really wouldn't be keen to do the op. But I'm not keen on going blind, and personally I'd rather take the risk, especially as I know that Dr H (my asthma cons) can give advise and be involved if need be. I have a whole host of thoughts and emotions running through me with this ... I don't want to go blind so I want the cataract removal op; I don't want to die from asthma so I'm nervous about the risks to my lungs; I don't want to have cataracts in the first place and I slightly resent the steroids I take for my asthma that have caused them in the first place; I don't relish the idea of any kind of surgery, full stop; I'd love the world to be clearer again and know that once the cataracts are removed then there's almost zero chance of them returning (the only possibility would be if they didn't remove every little scrap of lens). I'm nervous, impatient, anxious, excited (at the prospect of clear sight, not at having surgery!). Very mixed up.
At around 3am I woke up with my right eye stuck together and I immediately knew that I'd picked up conjunctivitis, most likely from the optician. I got up, gave my eyes a bit of a clean so that I was a little more comfortable, but they still continued to dribble their nasty gunk, and as the night went on the gunk got gunkier and my eyes got sorer. The right was definitely worse than the left, which would fit in with the optician having fiddled more with my right eye as she had a good look at the cataract in that eye. I phoned the optician in the morning just to make them aware, rather than to complain, but they were ever so defensive saying that they'd had no other complaints and it was 'probably just a coincidence'. I'm still sure I got it from there, and I wasn't really complaining, just telling them so they could make sure their equipment/opticians are clean and infection-free. Anyway, I ended up heading up to the walk-in centre for some chloramphenicol eye drops, so that was another medical contact. Drops in hand (well, drops in eyes really ;oP ) I went home to gather my things before taking myself up to Edinburgh for the weekend. I was staying with Mum, getting a bit of much-needed TLC and was planning on meeting up with a couple of OU friends, one of whom I'd never met before and was visiting Edinburgh from Portland for the weekend.
It was lovely to get some parental cossetting, especially while I was feeling so yuck with the cold, conjunctivitis and increasing lung-grumpiness. The lung-grumpiness was getting worse though and I started to produce pond life so on Sunday morning I ended up phoning NHS24. I needed some antibiotics before things got too nasty. I have to say that both the people I spoke to on NHS24 were very good and responsive, taking my medical history on-board with appropriate significance. Within half an hour I had an appointment with the out of hours doctor at the OPD at Edinburgh Royal Infirmary, so Mum, J (step-dad), and I got ourselves together and took ourselves off to the ERI. Again, I was impressed by the thoroughness of the doc (an experienced GP and out of hours doc), and appreciated his concern and reluctance to just prescribe some antibiotics and send me on my way, even though I didn't want to end up round the corner in A&E. The doc had taken a history from me and was subsequently aware of my potential to crash with my asthma, so he phoned through the medical registrar, explained my situation and discussed the best plan of action. He then called for a porter and I was trundled round to Immediate Care in A&E, where I was examined, x-rayed, jabbed with a cannula, had bloods taken, and nebulisers given. All the staff were lovely, and the doctor was very on the ball, and clearly concerned, though I think more by my history than by my presentation. He said that at that point I was 50/50 for admission, and I think that I had I not had my parents with me then he would definitely have admitted me. Even with them there he was very reluctant to let me go, and it was only after a few hours of observation that I was allowed home. I didn't feel great, but I didn't feel as though I needed to be in hospital, and with antibiotics now in hand things should settle. Settling grumpy lungs can be a bit of a long job though and they're still not very happy. In fact, today I've been barking like a seal :o(
I was back at the doctors' surgery yesterday too, because out of nowhere at around 9pm on Tuesday evening I started having intermittent waves of excruciating stabbing pain in my stomach/liver area. The GP made sure it wasn't pleurisy, which she said in my case is considered an emergency (!). Thankfully it isn't that, but I didn't think it was anyway. Other than that though she seemed a little uncertain as to what it is, but options include an ulcer (which would probably be medication induced), chest wall inflammation, or muscular (but it doesn't feel muscular). The plan of action is a passive wait and see if it settles on its own, and she's given me some pain killers. It is a little better than it was, though it hasn't gone yet and I'm dosing myself up when I can. I'll see how it goes over the weekend, and I'm hoping that it'll be much improved by Monday, whatever it is. I've had an ulcer from some of my meds in the past, and although the pain is presenting differently, it's a similar type of pain, so I wonder if this is another ulcer. Even if it is it could heal itself so I'll see, and I'll hope.
Today has been a pyjama day. I've done very little, barked like a seal, wheezed a fair bit, done an hour and a half's study, felt guilty about not having done more study, but not guilty enough to actually get productive. I will get down to it. I have to. I've got several weeks to catch up on, but on a positive note, that essay I mentioned earlier, I got 88% for!
It started with a standard review appointment with my asthma consultant, who described my asthma to a medical student as 'terrible' and then made the usual comment that there's nothing more we can do at the moment. In a last ditch attempt to try anything we thought we'd maybe give tiotropium a go seeing as it's probably the last thing we haven't tried to date. This would have to be in place of the ipratropium nebules as they're very closely related drugs and there's a significant increase of risk of side-effects such as glaucoma if used in conjunction. It was a gamble, but a gamble worth taking. It didn't work out though, and although it would've been nice to have been able to cut down on the time I spend using the nebuliser, and the generally quantity of medication I take, my lungs didn't like the change and began to go downhill. My consultant has gone on holiday for a couple of weeks so wasn't around when I called his secretary to explain the situation and get the official say-so to go back to my old meds, but she spoke to one of my consultant's colleagues and they've given that say-so.
The day after my appointment with the asthma consultant I had an appointment with my POTS consultant at the falls and syncope service. I had a huge number of questions for Dr N, and managed to get through most of them, although some of the time was taken up with questions to and from three medical students who were sitting in on the consultation. On the whole, I don't mind med students coming in, because they have to learn and they're going to learn best by having patient contact. There's been one occasion I can think of where I've requested a preference not to have a student present, but that was because I'd wanted to discuss a sensitive issue that might have needed some explanation to the student, and I didn't want to go into it. Anyway, this time I had no objection and it meant that the three third years learnt a little about POTS. As I'm still passing out a lot Dr N decided that it'd be a good idea to get a tilt table test done, and before I knew it I found myself being strapped to a bed and tilted to an angle of 70 degrees. The plan had been to leave me for thirty minutes and if I didn't pass out by then they'd give me GTN (this is supposed to make you more sensitive to fainting, or something), but I'm allergic to nitrites so I can't have GTN so they changed the plan to a forty minute test without GTN. After 6 minutes I was feeling really nauseous. After 13 minutes I was throwing up and almost out. At 13 1/2 minutes the test was stopped. In addition to the POTS diagnosis they've now also given me the vague diagnosis of vasovagal syncope, which basically means that I faint, so it's not a very informative diagnosis really. However, because I didn't actually reach the point of passing out, but was only very, very close to it, Dr N wants to repeat the tilt table test. I'm not looking forward to it, especially as, to use Dr N's description, next time they'll 'put me in a hoover bag'!!! Er, great... Apparently this will reduce the test time from 40 minutes to 20 minutes, but to be honest I can't see the use in this seeing as I only lasted 13 minutes last time.
The following few days were doctor-/appointment-free and on the Monday evening W and I went to the theatre to a fantastic production of Pride and Prejudice at Theatre Royal. It was great fun, and the company (Theatre Royal Bath Productions) really brought out the humour in the story. We both really enjoyed it, but it turned out that we also both picked up a cold while we were there. I had to do what I could to ignore feeling coldy and grotty and the ensuing lung-grumpiness as I had another late essay to write for my OU course. I eventually got it done and sent off into the ether towards my tutor on the evening of Wednesday last week, but then proceeded to feel grottier with the cold. Miserable.
The next day I had an appointment for a sight test at the optician - the 'usual' optician, not the hospital optician I go to every six months. My prescription has changed again (though not by much), but I'm not getting new lenses just at the moment because the optician says she thinks my cataracts are now at a stage where they need removing. Things have been getting cloudier/mistier and the light scattering has been getting worse, so I knew that the cataracts were getting denser even if maybe not all that much bigger. I know the cataracts themselves are still pretty small, but they're dead central so interfere with vision significantly, and I've been aware that the one in the right eye is definitely getting worse. The optician wrote a letter to my GP suggesting a re-referral to the opthalmologist and I now have an appointment with them for 1st April. The thing is that last time i saw the opthalmologist she said that she'd be extremely reluctant ever to operate on my cataracts because of the risk of the anaesthetic on my asthma. She said that there's even a risk using local anaesthetic so really wouldn't be keen to do the op. But I'm not keen on going blind, and personally I'd rather take the risk, especially as I know that Dr H (my asthma cons) can give advise and be involved if need be. I have a whole host of thoughts and emotions running through me with this ... I don't want to go blind so I want the cataract removal op; I don't want to die from asthma so I'm nervous about the risks to my lungs; I don't want to have cataracts in the first place and I slightly resent the steroids I take for my asthma that have caused them in the first place; I don't relish the idea of any kind of surgery, full stop; I'd love the world to be clearer again and know that once the cataracts are removed then there's almost zero chance of them returning (the only possibility would be if they didn't remove every little scrap of lens). I'm nervous, impatient, anxious, excited (at the prospect of clear sight, not at having surgery!). Very mixed up.
At around 3am I woke up with my right eye stuck together and I immediately knew that I'd picked up conjunctivitis, most likely from the optician. I got up, gave my eyes a bit of a clean so that I was a little more comfortable, but they still continued to dribble their nasty gunk, and as the night went on the gunk got gunkier and my eyes got sorer. The right was definitely worse than the left, which would fit in with the optician having fiddled more with my right eye as she had a good look at the cataract in that eye. I phoned the optician in the morning just to make them aware, rather than to complain, but they were ever so defensive saying that they'd had no other complaints and it was 'probably just a coincidence'. I'm still sure I got it from there, and I wasn't really complaining, just telling them so they could make sure their equipment/opticians are clean and infection-free. Anyway, I ended up heading up to the walk-in centre for some chloramphenicol eye drops, so that was another medical contact. Drops in hand (well, drops in eyes really ;oP ) I went home to gather my things before taking myself up to Edinburgh for the weekend. I was staying with Mum, getting a bit of much-needed TLC and was planning on meeting up with a couple of OU friends, one of whom I'd never met before and was visiting Edinburgh from Portland for the weekend.
It was lovely to get some parental cossetting, especially while I was feeling so yuck with the cold, conjunctivitis and increasing lung-grumpiness. The lung-grumpiness was getting worse though and I started to produce pond life so on Sunday morning I ended up phoning NHS24. I needed some antibiotics before things got too nasty. I have to say that both the people I spoke to on NHS24 were very good and responsive, taking my medical history on-board with appropriate significance. Within half an hour I had an appointment with the out of hours doctor at the OPD at Edinburgh Royal Infirmary, so Mum, J (step-dad), and I got ourselves together and took ourselves off to the ERI. Again, I was impressed by the thoroughness of the doc (an experienced GP and out of hours doc), and appreciated his concern and reluctance to just prescribe some antibiotics and send me on my way, even though I didn't want to end up round the corner in A&E. The doc had taken a history from me and was subsequently aware of my potential to crash with my asthma, so he phoned through the medical registrar, explained my situation and discussed the best plan of action. He then called for a porter and I was trundled round to Immediate Care in A&E, where I was examined, x-rayed, jabbed with a cannula, had bloods taken, and nebulisers given. All the staff were lovely, and the doctor was very on the ball, and clearly concerned, though I think more by my history than by my presentation. He said that at that point I was 50/50 for admission, and I think that I had I not had my parents with me then he would definitely have admitted me. Even with them there he was very reluctant to let me go, and it was only after a few hours of observation that I was allowed home. I didn't feel great, but I didn't feel as though I needed to be in hospital, and with antibiotics now in hand things should settle. Settling grumpy lungs can be a bit of a long job though and they're still not very happy. In fact, today I've been barking like a seal :o(
I was back at the doctors' surgery yesterday too, because out of nowhere at around 9pm on Tuesday evening I started having intermittent waves of excruciating stabbing pain in my stomach/liver area. The GP made sure it wasn't pleurisy, which she said in my case is considered an emergency (!). Thankfully it isn't that, but I didn't think it was anyway. Other than that though she seemed a little uncertain as to what it is, but options include an ulcer (which would probably be medication induced), chest wall inflammation, or muscular (but it doesn't feel muscular). The plan of action is a passive wait and see if it settles on its own, and she's given me some pain killers. It is a little better than it was, though it hasn't gone yet and I'm dosing myself up when I can. I'll see how it goes over the weekend, and I'm hoping that it'll be much improved by Monday, whatever it is. I've had an ulcer from some of my meds in the past, and although the pain is presenting differently, it's a similar type of pain, so I wonder if this is another ulcer. Even if it is it could heal itself so I'll see, and I'll hope.
Today has been a pyjama day. I've done very little, barked like a seal, wheezed a fair bit, done an hour and a half's study, felt guilty about not having done more study, but not guilty enough to actually get productive. I will get down to it. I have to. I've got several weeks to catch up on, but on a positive note, that essay I mentioned earlier, I got 88% for!
Monday, 8 February 2010
A bit less Wensleydale
Last time I posted I was feeling pretty emotionally crumbly, but things in that respect have improved over the past five days or so. I think this was in part down to an appointment with my new psychiatrist. I've seen a psychiatrist for many years now, initially because I was extremely depressed (for reasons that I won't go into), but I've been really well in that respect for almost seven years. Of course I've had the occasional reactional blip, almost exclusively in response to my physical illness, but they've been short-lived and understandable. I now see the psychiatrist because of the emotional impact that my asthma has, but I don't see them very often these days simply because I don't need to - I generally cope a whole lot better with the things that life throws at me. In fact several years ago the psychiatrist I was seeing at the time said that he wouldn't discharge me because I cheer him up too much :o) That was two psychiatrists back.
The psych services are very unstable with extremely little consistency, which I think is terrible as it's one area of medicine where the development and maintenance of a trusting doctor-patient relationship is vital, but it's just not there. Maybe it's doctor burn-out, I don't know, but whatever it is I'm now onto something like my 12th psychiatrist in 14 or 15 years! Things have been more stable since the middle of 2003, although I am now onto the third psych since then.
Usually psychiatrists are fairly good at telling you that they're going to leave, but the last one didn't tell me and the first thing I knew about it was when I received a very strange letter from the community mental health team (CMHT) that I think I mentioned a few posts back. The name and address at the top of the letter were mine, but it then went on with 'Dear Lesley', told me that the appointment I'd been expecting just a couple of days later with Dr G had been cancelled and a new one made for me with Dr M - a psychiatrist I hadn't seen for two years - on 32nd January. Hmmm, someone obviously wasn't with it! I phoned the CMHT to ask them what was going on, and while they couldn't account for the date or the wrong name, they assured me that the letter was for me and that the reason my appointment was to be with Dr M was because Dr G had left. Oh. News to me. They said they'd send me another appointment, this time for a date that existed, so I waited, and I waited, and then I got a letter saying they were sorry that I couldn't/didn't attend an appointment with a Dr T on 30th December. Had I known about it (and had I actually been in Newcastle) then I would've gone, but I didn't go because I didn't know ... and anyway, who was this Dr T? I phoned the CMHT again, explained my reason for not attending and asked who Dr T is, and the answer? A new psychiatrist. Really? What a surprise. Oh well. Eventually, having supposed to have had an appointment with Dr G at the beginning of November, I saw Dr T on Monday just gone. I hadn't realised how uncertain I was about meeting yet another psychiatrist until afterwards. It's not just the prospect of having to get to know yet somebody else, explaining the past and my current health/disability, but also the prospect that it's yet another locum so there's no real point in going into things in too much detail or working out their approach to 'treatment'. I had nothing to worry about. Dr T has taken on a permanent position, is fairly young, a lovely, approachable woman with a good sense of humour, on the ball, and not too quick to jump in with medication. Like almost every other doctor I've seen in the past couple of months she hadn't heard of POTS before, but as this has been the thing that's impacted so enormously on my life over recent times, this is what I needed to talk about. She was open to learning about POTS, and of course was concerned about the impact it's having on my life both physically and emotionally. She also said that if there's ever a time when I'm not well enough to get to my appointments with her, if I give her a few days notice then she's quite happy to come and see me at home! This is amazing. This is how the mental health services should operate, but it's not something that's ever been offered to me before. Occasionally Dr M would come to see me in the Freeman when in with my asthma, but it wasn't something that had specifically been offered, rather something that I asked if it would be possible.
After my appointment with Dr T I was hugely relieved. I knew I was in safe hands, and that those hands are here to stay, and I'd also been able to off-load a bit of the trauma of the past few month's life-changing on-set of POTS. I'd been miserable, crying, scared, and emotionally crumbly, but now I'm not so Wensleydale (like the cheese).
It's a huge relief, all of it.
The psych services are very unstable with extremely little consistency, which I think is terrible as it's one area of medicine where the development and maintenance of a trusting doctor-patient relationship is vital, but it's just not there. Maybe it's doctor burn-out, I don't know, but whatever it is I'm now onto something like my 12th psychiatrist in 14 or 15 years! Things have been more stable since the middle of 2003, although I am now onto the third psych since then.
Usually psychiatrists are fairly good at telling you that they're going to leave, but the last one didn't tell me and the first thing I knew about it was when I received a very strange letter from the community mental health team (CMHT) that I think I mentioned a few posts back. The name and address at the top of the letter were mine, but it then went on with 'Dear Lesley', told me that the appointment I'd been expecting just a couple of days later with Dr G had been cancelled and a new one made for me with Dr M - a psychiatrist I hadn't seen for two years - on 32nd January. Hmmm, someone obviously wasn't with it! I phoned the CMHT to ask them what was going on, and while they couldn't account for the date or the wrong name, they assured me that the letter was for me and that the reason my appointment was to be with Dr M was because Dr G had left. Oh. News to me. They said they'd send me another appointment, this time for a date that existed, so I waited, and I waited, and then I got a letter saying they were sorry that I couldn't/didn't attend an appointment with a Dr T on 30th December. Had I known about it (and had I actually been in Newcastle) then I would've gone, but I didn't go because I didn't know ... and anyway, who was this Dr T? I phoned the CMHT again, explained my reason for not attending and asked who Dr T is, and the answer? A new psychiatrist. Really? What a surprise. Oh well. Eventually, having supposed to have had an appointment with Dr G at the beginning of November, I saw Dr T on Monday just gone. I hadn't realised how uncertain I was about meeting yet another psychiatrist until afterwards. It's not just the prospect of having to get to know yet somebody else, explaining the past and my current health/disability, but also the prospect that it's yet another locum so there's no real point in going into things in too much detail or working out their approach to 'treatment'. I had nothing to worry about. Dr T has taken on a permanent position, is fairly young, a lovely, approachable woman with a good sense of humour, on the ball, and not too quick to jump in with medication. Like almost every other doctor I've seen in the past couple of months she hadn't heard of POTS before, but as this has been the thing that's impacted so enormously on my life over recent times, this is what I needed to talk about. She was open to learning about POTS, and of course was concerned about the impact it's having on my life both physically and emotionally. She also said that if there's ever a time when I'm not well enough to get to my appointments with her, if I give her a few days notice then she's quite happy to come and see me at home! This is amazing. This is how the mental health services should operate, but it's not something that's ever been offered to me before. Occasionally Dr M would come to see me in the Freeman when in with my asthma, but it wasn't something that had specifically been offered, rather something that I asked if it would be possible.
After my appointment with Dr T I was hugely relieved. I knew I was in safe hands, and that those hands are here to stay, and I'd also been able to off-load a bit of the trauma of the past few month's life-changing on-set of POTS. I'd been miserable, crying, scared, and emotionally crumbly, but now I'm not so Wensleydale (like the cheese).
It's a huge relief, all of it.
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