A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

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.

8 comments:

Emily H said...

Hi there Becky,

Sorry to hear you've been having a rough time, hope you're on the mend now.

Couple of things - I have a port, as you might know - have had it since July 2008 and it's been a (probably literal) life-saver on many occasions since then. I don't think there's anyone else in my area who has one for asthma - as you say, they're more commonly used for CF. Unfortunately, there are two main hospitals in Nottingham, and the one I go to regularly (Queens) is not the one that the CF team is at. This means that even on the respiratory ward, very few of the nursing staff are familiar with ports. In fact, the only people who are familiar with ports at Queens are the Paediatric Oncology nurses, and they're always too busy to leave their ward and come to A&E to needle a port of someone who is not their patient. If I'm well enough, I needle it at home before the paramedics arrive, so that I can have IV aminophylline within minutes of getting into Resus (as delays in having it have seemed to contribute majorly to my chances of getting ventilated, in the past). If I'm not well enough to needle it myself, then Alex needles it for me, if he's at home with me, or meets me at A&E and needles it there if he's at work (obviously, I'm in a privileged position, having a husband who's a doctor and who works at Queens!). I'm also in the process of teaching a couple of other friends (most of whom are doctors and ex-colleagues) how to needle it, so that if Alex is working elsewhere, or away, there will be someone available who can do it. I've also shown my sister how to needle it - she's not medical, and that is a slightly higher risk strategy, as the hardest part, technically, for a non-medic, is the very necessary aseptic technique to prevent infection (the actual needling is very easy, pretty much like sticking a drawing pin in a notice board!). For medics, aseptic technique is second nature, but for non-medics, it takes a lot of practice, and it's very easy to inadvertantly contaminate yourself or the patient by touching something that you shouldn't, for example, without even realising. So asking non-medics to needle it probably does slightly increase the risk of infection (which usually means the port has to come out). Nevertheless, it's certainly possible to teach friends and family to needle it so that you have a group of people 'on call' who can do it.

Also, if I recall rightly, a lot of your attacks seem to be the slow deterioration over a few days type ones, although I know that you, like me, have the sudden onset 'Type II-ish' ones too. I tend to deteriorate over minutes to hours rather than days, but I do have some attacks that are more slow onset, and if I feel that I am going downhill, then I often needle my port whilst I am still well enough to do it, just in case things deteriorate. This isn't as wasteful and risky of infection as it sounds, as it has to be needled once a month to flush it with heparin anyway, so often you can use it as an opportunity to do that.

[sorry - have to post as two messages - too long!]

Emily H said...

[here's the rest!]

The other thing I wanted to say was about your worries over a potential diagnosis of bronchiectasis. I don't know if you knew, but since my ARDS and long ventilation in 2007 I have had bronchiectasis and interstitial fibrosis, as a result of the ARDS and the very high pressures they had to use to ventilate me. It does require some extra consideration, and change things a bit, and I was very concerned when I initially got the diagnosis (although, like you, I was pleased to have an explanation for the more frequent chest infections and other symptoms) but there is a lot that can be done, management-wise, and I have it under control now to the extend that I don't often get really severe infections. You learn to predict the infections from the very earliest of symptoms, before you get to the blubby, productive stage. Proper chest physio has also made a lot of difference (although it's difficult, because a lot of the techniques recommended for bronchiectasis, such as 'huffing', are too much for the twitchy airways of brittle asthmatics and tend to precipitate bronchospasm), and I've also been helped by taking prophylactic antibiotics three times a week - azithromycin, which is used a lot in CF, is thought to have anti-inflammatory properties as well as anti-bacterial, so it's made a lot of difference, and I'd recommend it, provided it's not one of the ones you're allergic to of course!

Take care, and feel free to get in contact if you want to discuss ports, bronchiectasis or anything else.

Love Em H xx

Emily H said...

PS - meant to say, as well, that I'm relieved to hear that they've seen sense and decided to sort your cataracts for you. I'm sure you'll be fine - I've seen 95 year old men who, as the anaesthetists like to say, 'aren't fit for a haircut' have their cataracts done under local and cope with it fine. I suspect that, like me when I had my port, you'll find lying flat the hardest bit, but they can often do it with you at a bit of a tilt if that's easier for you. Hope it all goes okay xxx

B said...

So much has been going on. I'm glad you're still breathing.

I'm still hoping to see you soon. Do you think you could manage coffee in town, maybe?

Dawn said...

Hi Becky
Glad to see you back :)
Wow, that certainly is alot to get your head around!! I don't have any advice; I just thought I'd say hi!
Take care
Dawn xx

Formerly known as: Queen of Bling said...

Wow, you sound like I did! I just had a portacath and love it with the exception that it must be flushed monthly! They didn't let me in on that so it's kind of a nuisance. I was misdiagnosed for yrs w/ asthma, copd, broncheactisis. I have Cystic Fibrosis that was missed; my brother even died from it! Just make sure they are thorough! Thankd for sharing your story, sometimes you forget there are others suffering. I needed this to bring me in check this morning :-) Blessings to you.

Raven/Missy said...

Becky,

That is a lot to have going on at the same time. I can understand why your head is in a bit of a spin, mine would be also.

I will keep you in my thoughts and prayers that things settle down for you real soon and you feel better also!

BeckyG said...

Thank you all so much for your comments. It means a lot to have the support of others.

Emily, thank you ever so much for all the info about ports and bronchiectasis and how you manage both things. My consultant has said that he's happy for me to have a port, but Dr G is still thinking through the risks with Infection Control, so it's not yet a certainty. I'm desperately hoping it'll happen though, and the longer I have to wait for an answer the more nervous I'm getting about it being negative. I have an OPD appointment with my consultant next week, and I'm very much hoping that Dr G will have got back to Dr H with a decision by then. If I eventually get a positive answer then I may well be in touch, especially about teaching non-medical bods how to needle the port.

Beth, I'm definitely up for a coffee!

Dawn, thank you for your support. It's always lovely to hear from you so thank you for your post, even though I know it's hard to know what to say.

Formerly Known as Queen of Bling (I love that! ;o) ), I'm glad that what I write here is of help to others, even if that's just letting others know that they're not alone if they're going through similar things. That's one of my aims (even though I've been rather sporadic with my writing here over recent times), because there was such a long time when I felt very isolated with my health problems. There has to be *some* usefulness in it all, so if reminding others that they're not alone is a consequence of my writing here then I'm happy :o) Very sorry to hear about your situation though, and especially about your brother. Great to hear that the portacath has been a good thing for you, and that they finally worked out what's causing your problems.

Raven/Missy, thank you too for your message of support. As I've said, it means a lot to know that people are holding me in their thoughts and prayers, even those who I've never met. Thank you.

Thank you all.
Becky.