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.

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!

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.