Friday, 13 May 2011

Hospital and escape!

Well for a start, I'm very confused over where my last update is! I know it was posted, I had someone comment on it (thanks Wendy) but now there is no sign of it! Weird.....

In the early hours of last Friday morning I eventually gave into these stupid lungs of mine and called an ambulance. I don't remember very much after that point, I'm told that when they arrived my sats were in the 60's% and I was given lots of adrenaline, nebs and oxygen. I became more alert not long before we got to hospital and had the paramedic telling me that he hadn't seen me in a while. It's been well over a year since I last called an ambulance but there seems to be one poor paramedic who gets me a lot and even though time passes, I guess he remembers me as I have a tendancy to go into respiratory arrest on him!
When I got to hospital I felt slightly better but ABGs were pretty shocking so BiPap was discussed, thankfully they didn't feel the need to go down that route as I can't imagine that I'd tolerate that very well! So instead I had IV magnesium, more back to back nebs and O2, and my old friend IV aminophylline.
Friday night I started to deteriorate again with aminophylline, O2 and back to back nebs so I was given more IV magnesium and my lungs slowly calmed down.
IV aminophylline came down on Sunday morning but Sunday night was a bit of a nightmare. pCO2 rose, pO2 dropped and I spent most of the night on 100% O2 as anything less would make my sats drop below 90%.
Monday morning I finally felt better and managed to get some sleep during the day.
There seems to be a common theme whenever I'm admitted to the respiratory ward - most of the other patients in my bay are crazy! Elderly old ladies with dementia and infections are not a great combination!!! There was a very sweet old lady in the bed beside me, she was very unsteady on her feet and when night time came, she just got up and wandered around until someone found her and walked her to the bathroom. Monday night I had the shock of my life when I'd just gotten to sleep and she fell on me! LOL!!
Tuesday the IV aminophylline finally came down, and eager to get home I stopped my nebs. I'm not allowed home nebs so have to be off them for 24 hours before being allowed home. Tuesday night, one of the other ladies who was a 79 year old tiny thing, caused such a fuss and was agressive that security were called up. It was so funny, these 2 big security blokes turned up to control this tiny old woman!
Wednesday I was initially aiming to go home but my peak flows had dropped and I was wheezy so I very reluctantly agreed to stay another night. Wednesday night whilst I slept, 79 year old agressive crazy lady came over to my bed, pulled back the covers and shook me awake! She was looking for her husband, when she realised I wasn't him she went onto the next bed and woke up the next person!! Haha if it hadn't have been me being woken up in the middle of the night I think I would have found it quite hilarious!
Thursday review came and the stupid dr decided my peak flow was still too low to discharge me. I considered self discharge but thats not really a route I want to go down as it looks so bad in my medical notes, and if I did ever end up being readmitted soon after then it would be my own fault. So I kicked up a little fuss (I don't like to be too compliant ;-) lol)and finally agreed to stay again, but made it clear that I thought it was stupid to keep me in hospital just because they were worried low peak flows = massive asthma attack. Tuesday morning onwards I wasn't receiving any treatment that I don't have at home so I was literally sat there incase I became ill, and I'm more than capable of looking after myself at home.
Today, peak flows were still rubbish and sats were down. The poor SHO came along and I immediately started with my arguement that I wanted to be discharged. My consultant wasn't around this week and I wonder if I'd have been able to go earlier if he was. No one was willing to take responsibility discharging me with crap peak flows so another consultant came down to see me. Thankfully he agreed that they couldn't keep me in hospital just incase I became poorly, so said I could go home on the condition that if I feel even slightly worse over the weekend I go straight back in, and that I don't exert myself. Haha like that's going to happen!

So, I finally made it home! :D When I get home after a hospital admission I have to throw everything that has been to the hospital in the washing machine, I always feel dirty in hospital. So washing machine on, showered, moisturised (hospital makes my skin dry) and clean pjs on. Then I felt much better! Tommy baby had decided to be sick all over the floor at this point though, I swear, he'd gone walking around my flat being sick in different places, so that was a nice welcome home present lol. Then I had to clean out his food area and litter tray, by this point I was feeling pretty exhausted so I resisted the urge to get the vacuum out. I'll have to save that little chore for another day as I always feel pretty ill and exhausted for a day or 2 after a hospital admission. Then again, that depends on how long I can stand looking at the messy carpet for!

Tuesday, 3 May 2011

Postivity shines!

It's world asthma day! Only people I speak to and see on a regular basis know about my horrible lungs, I don't really publicise it or talk about it very much. Recently I realised I'm treating it as a secret, something I'm ashamed of because of the huge impact it has on my life. The past week or so I've been including asthma in my 'facebook life'. I posted a link to my Get it off your chest story, and I posted a status advertising world asthma day (granted I stole the status off someone, but that's only because it was so good!) The result has been people sending me messages who I haven't spoken to for a while; asking about brittle asthma, how it effects my life, and my medication. So there, I have raised awareness of brittle asthma and I resolve to stop hiding my condition :) I can't complain that the lack of asthma awareness when I hide my own condition!

This morning I had a work meeting with a HR manager and my union rep. I wasn't expecting much to come out of this meeting, there is a bit of a pattern to these things - I get my hopes up, come out of the meeting feeling unsure about what is happening, then over the coming days I feel disappointed and worse than I did previously when I realise I won't be returning to work anytime soon :(
Anyway, today was different!! I've been given a date to start a gradual return to work, it's 2 weeks away but I'm not sure Occupational Health will have had their input by then so it may be delayed.... but that is just basically ticking boxes as Occ Health confirmed I was fit to return to work ages ago and I'm not any worse since then.
I don't want to be too optimistic or positive about this until I actually return to work, I've built my hopes up many times to have them smashed when it all goes wrong.... but I can't help feeling good about this latest development :D

This isn't a return to my nursing position, that is a seperate ongoing battle, but I'm feeling quietly optimistic about that too. Playing a waiting game there right now.

And finally, I can't blog without giving my lungs a little mention. They're being a complete nightmare, at times I'm absolutely fine and other times I'm breathless and wheezy at rest so moving around isn't much fun! I don't know what to do or say, but I'm trying my best to avoid hospital and so far I'm succeeding!!

:) :) :) :)

Wednesday, 20 April 2011

Horrible lungs

My record run of avoiding hospitals has come to an end. I went almost a year without needing to go into hospital for treatment. I should clarify, I mean almost a year without needing to go into hospital since being diagnosed with asthma 6 years ago, I'd never been a patient prior to that!

Since starting Azithromycin my asthma has felt worse. I'm sure it's just a coincidence, but it means I can safely say Azithromycin hasn't made any improvement yet!

Last night I was in Exeter when I realised I needed to get myself to hospital. I could have gone to the nearest hospital where I always get admitted but because of my medical history and all the ED doctors know me, they automatically try to admit me and I couldn't be bothered with the battle and ending up having to self discharge.
So, I made the decision to drive back to the district hospital close to where I live. They only have a Minor Injuries Unit and no facilities to admit me, if I turn up there worse than they can deal with they call an ambulance to take me to Exeter. Last night was I confident I wasn't severe enough that I'd scare them!
I drove the 30 minute drive, I'd forgotten how horrible it is to drive whilst having a full on asthma attack, I've driven in worse states but it still wasn't comfortable.
Once at the MIU unit I had to sit around and wait to be seen, the duty doctor didn't seem to understand brittle/difficult asthma and couldn't get his head around the fact that I'm on long term high dose steroids, he kept asking the same questions as if he thought I'd made a mistake.
There was a lot of we'll give you a nebuliser then we'll wait and see if it helps, after 30 minutes you can have another one, we'll stick to salbutamol to start and then throw in an atrovent in a couple of hours!
Don't get me wrong, they doctor and sister were both lovely, and I wasn't life threatening or anywhere near that. I guess because in Exeter most of the staff know how poorly I get, they don't waste any time in treating me, often I feel like they overtreat me. I've never been made to sit and wait to see if I improve! It was a little frustrating as I knew I needed back to back nebs but it took them a little while to work that one out last night.

For majority of the time I was in the MIU I was the only patient, I heard the sister complaining that she had been on the go pretty much constantly all night which made me smile!!

After hours of intermittent treatment with nebs and oxygen I felt less breathless and wheezy. My sats were 93% and peak flow had gone up to 200. This is the other reason I chose to go to the MIU, I knew they'd discharge me with stupid clinical observations like that whereas Exeter would have never let me go! I genuinely did feel better though so it was fine :-)

After spending most of the day asleep I now feel much better than I did, but I am aware that my lungs are really not happy. I just hope there isn't a 'proper' hospital admission looming in the near future!

Monday, 4 April 2011

New drugs!!

Well, new drug to be truthful, but drugs sounded better!

Since my last post I've been really struggling, I've thought about calling an ambulance more than once but decided against it, which has turned out to be an okay decision as my asthma has become more manageable after every attack.

Today I saw my consultant, I've been wondering what the next move would be for a while now. It turns out that the CT scan I had done shows that there is some thickening and inflammation, but not enough to be diagnosed with bronchiectasis :) At least, I think that was what he said, for some bizzare reason I find it hard to concentrate on what my consultant tells me, I wait for a copy of the letter sent to my GP to make sure I've understood what was said!! He has suggested I start an antibiotic called Azithromycin, 3 times a week. If anyone has been on it I'd love to hear what you thought of it. He is going to write to my GP and get him to prescribe it, so I have to wait for that letter before starting.

I felt really ill and wheezy this morning, and in a way I was glad that I'd be able to go to see my consultant and be able to 'show' how I was feeling. Typically, by the time of my appointment I was feeling relatively okay! Peak flow and spirometry were a bit pathetic, but everything else was fine. I feel like such a fraud when I go in and say "I feel so ill, blah blah, can't breathe at night, blah blah" but I look fine!!! I hope that made sense, I don't like or want to be ill, but I wouldn't feel like such a fraud if my clinical presentation wasn't totally contradicting what I was saying!!!! That is the reason I took so long to be diagnosed too, my lungs have a magical ability to behave whenever I go to respiratory related appointment, but play up before and after!

My new favourite film is Phantom of the Opera. I'll know the words soon I've been watching it so much lately. One day I'd love to go to the theatre to watch it, this is officially now on my 'to do' list :)

Wednesday, 30 March 2011

Rant!!

feel free not to read this, I'm just so fed up that I need to get it out!

Todays plans were to go for a short walk, dye my hair, and make soup. Considering I only managed to get out of bed at 2pm, it's looking unlikely that I'm going to manage any of them.

I hate hate hate hate hate my horrible lungs. After an entire night of wheezing, coughing, using inhalers, sitting upright, dozing for about 10 minutes a time, oxygen sats of 82% - 90%, I feel awful :( I'm tachycardic, thanks salbutamol, but I've got to the point where the shakes no longer effect me (does that happen to anyone else? You have so much that you go past the shakes?? I get the shakes with back to back nebs, but not otherwise)

I've had the discussion with my consultant many times over having a home neb. He always refuses, he says if I need a neb I should go to hospital immediately as my asthma has a tendancy to rapidly deteroriate. He thinks I'm not responsible enough, if I had a home neb then I'd stay at home until I became very poorly.
But I don't go to hospital unless I feel my life is in danger, I just make do with my inhaler and spacer, which I've heard numerous times is as good as a neb, but I really don't think that it is!!
Maybe if I did call an ambulance every time I needed a neb, then he'd see my point, but I really really really try to avoid hospital/999 calls until I get to the point of knowing I need medical attention otherwise I'm in trouble.
I guess that statement might prove that my consultant is right, I am irresponsible when it comes to my asthma. I wouldn't let anyone else get away with what I do, but I'm different, I'll always be fine *roll eyes* then I have a shock which proves I'm not invincible and start to take care of myself, but then slowly revert back to my stupid ways. I'm incredibly blasé when it comes to my asthma, it frustrates other people, and at times frustrates me as I know in the past I've let myself get into dangerous situations because I should have acted sooner.

Anyway, after being sat down for an hour, my sats are 93%. See they're improving, I don't need to worry. (and before anyone says anything, I've always dropped my sats when my asthma plays up, I've had investigations but we're still not sure why it happens, it's not typical for an asthmatic, but it's typical for me. I was once sat in resus with sats of 78% but I really didn't feel too bad!!)

My chest is tight, my back hurts, my head hurts, my peak flow is 180 and as soon as I move to get a drink I become breathless and my sats drop, so as long as I stay here, sitting down, I should be okay. Just for the record, if I become worse then of course I will call an ambulance, I don't want to die, but I know my own body, as it starts to ease off I should be okay, until it starts over again then I'll have to reassess.

Meh. I guess it could be worse. I'm just feeling very sorry for myself. I've got an appointment with my consultant on Monday so I'll see what he has to say.

Monday, 14 March 2011

Mojitos!

I didn't realise it had been quite so long since I last posted! To be honest, not much has happened....

I had a CT scan of my chest, I haven't heard anything back following this so I'm taking no news as good news and hoping that I haven't developed bronchiectasis. I had my DEXA scan today, the results are right on the border between oestopenia and healthy, not great but better than my last one in 2006 so I'm relatively happy with that :)

My horrible lungs are still, well, horrible! The last time I had a undisturbed nights sleep was last year sometime, I've just had to accept this is life now! I really notice my stupid lungs when I'm walking with other people, I can't walk and talk at their pace, I get breathless so easily, I find it extremely frustrating and embarrassing. Actually, I get very breathless when I'm walking on my own at my own pace, but I suppose I notice it more and feel more self conscious when I'm with other people :( I wasn't going to reapply for my DLA when it's expires later this year, but it appears that my optimism that my asthma was improving was just that, optimism :( Ahh well, it could be worse, at least I'm not in and out of hospital every other week like I used to be!

I'm still not back at work despite my numerous emails and phone calls. I've now been off for a year, granted it was almost 2 years last time this happened, but still, it's not helping my 'battle' to get back to nursing on wards when I can't even sit in an office..... it would have been so much easier for me to accept medical retirement back in 2007... but I refused to give up then and I refuse to give up now.

And apart from all that, I'm trying to keep myself busy so I don't have too much time to sit and dwell on things. I'm still enjoying volunteering for the Samartians, although it's disturbing how many sex calls or people phoning up to hurl abuse down the phone we get! I do my shifts in the afternoon or evening as my lungs don't like mornings, sometimes it can take a few hours for the wheeze and breathlessness to ease off. I'm having issues when it comes to night shifts - wheezing and coughing down the phone isn't great, so once I've completed all the nights required to become a fully trained Samaritan, as opposed to a New Samaritan, I might have to look at whether volunteering on nights is good for me.
I'm also making an effort to meet up with friends, and have fun drinking cocktails, my favourite pastime :D Haha seriously, I think it would be so easy for me to sit at home moping about how awful my life is, how ill I am blah blah blah, I'm making sure I have some fun times so life isn't all doom and gloom :)

Wednesday, 2 February 2011

Who wants a simple life?

Do you ever feel like life goes from one drama to another?

Asthma control is so so, could be better but could also be worse so I'm not complaining too loudly. My respiratory team now want to run tests to see if I have bronchiectasis, and I need to have a colonoscopy following some concerning symptoms involving blood. Fun times ahead :(

In other news, I had all my hair chopped off! It was down my back and now it's cropped really close to my head. It's a little shorter than I anticipated but I've received lots of lovely compliments, I'll be happier when it's grown a little longer so I can tuck it behind my ears.

I've also completed the first part of Samaritans training and shifts with my mentor, now I'm free to take calls without being listened in on. I was nervous about it but I found it easier to take calls without my mentor listening in, it felt more natural so that was good!