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.