Friday, 26 April 2013

Week One....

I started the continuous trial of subcutaneous terbutaline this week. I think this week has been the placebo, I really hope this week has been the placebo. I've experienced absolutely nothing, not even the placebo effect! In fact, as the week has gone on, my lungs have slowly, gradually gotten worse. I've got daily appointments with my respiratory nurse whilst on the trial, she commented on this decline and today wanted me to be admitted as my oxygen saturations were only 90%. I talked my way out of it, I think the fact that I was able to talk in full sentences was what swayed it, and I promised to get to hospital if I needed to over the weekend. 
I'm really hoping that I can keep out of hospital, I desperately want to finish the trial and the trial will have to stop if I get admitted. It's taken so long to set up that I just want it over and done with now!
So next week is week two of the trial. I'm holding out that next week is going to be the terbutaline, and that it makes a difference to my asthma. If not.... well I'm trying to not think about that.......

I had an incredibly frustrating meeting at work today. To the people who matter (Human Resources, Occupational Health, Lead Nurses), I am a delicate little flower who can't do anything, and I mean anything which is in the slightest bit physically demanding. This opinion is not shared by myself nor my respiratory team. Obviously I accept there are limitations caused by my condition, and yes, when I'm poorly I'm severely limited. But I don't spend my life poorly. But then, I understand it's hard to know what to do with me when sometimes I'm really well - to the point where you wouldn't know there was anything wrong with me, and sometimes I'm really unwell - to the point of being unable to move and at worst, respiratory arrest. Then of course, the majority of time I spend at varying levels in between those two extremes.
Anyway, it was agreed that I could return to work next week, back to my old ward in a non clinical role. I pointed out I'm on the subcut trial and have a syringe driver to carry around, and have daily appointments with the respiratory nurse. They said that was fine. I should have said I don't actually feel well enough to work at the moment, but I didn't feel able to. I've been pushing to go back to work so I can't hardly say I can't as soon as they sort something out for me. I went to see my respiratory nurse and she advised that going back to work, mid way through the trial, when I'm already not feeling well, was not going to be a good idea. So I'm having another week off sick, then go back to work (in a role I really don't want to do) the week after. 

*sigh* sometimes it seems that life is back on track, but it never is.

Monday, 15 April 2013

Nothing is straightforward!

Following on from my last post, I was in hospital for 3 weeks. Yes, 3 long weeks! To start with my consultant didn't want me to go home as I was "too unstable" and was desperately trying to sort out the sub cut bricanyl infusion. But the NHS being the NHS, nothing is straightforward and there were all kinds of complications and hurdles to jump. Then I got a chest infection so couldn't start the sub cut anyway. After a week of IV antibiotics, my lungs settled down enough for my consultant to let me go home with the anticipation that we'd do the sub cut trial soon..... I've been out of hospital for 5 weeks now, and everything is finally set up for me to start the sub cut next week! Unfortunately I've picked up a cold and have a stressful few days ahead of me, so I need these lungs to remain stable and not throw a tantrum before next week.

I saw my GP not long after I'd been discharged. He said (and I quote as these words are stuck in my head) "the trouble with you, Dawn, is that you're going to die one day". He went onto say that I think I'm ok when I'm not, when I should be seeking help. I disagreed - I don't think I'm ok, I know I'm not ok, but what am I supposed to do? I can't go into hospital until I need to be in hospital!

Anyway, I'm still not back at work. The Occupational Health doctor I've been seeing for years has retired so I had to see the new consultant. He seems to be of the opinion that I'm a delicate little flower who can't even push a bed. He has recommended redeployment on medical grounds, but again, in the NHS nothing is straightforward or sorted out quickly!

Monday, 1 April 2013


It's been a while since my last post. I have been meaning to write, I get onto Blogger then I find I just don't have the words.

Since my last post I ended up in hospital again, less than 2 weeks after I was discharged. Usual story of managing at home until getting very poorly very quickly. For the first time ever, I have no recollection of the paramedics arriving. I always manage to 'hold on' until they turn up, then I know I'm safe - I'm in their care, they'll look after me. I've always thought of it as some kind of survival mechanism. Apparently this time I was unconscious and barely breathing when they turned up, then went into full respiratory arrest. I've always taken some comfort in this survival mechanism; however bad I get, somehow I manage to keep myself going until help arrives. Now, I can't depend on this. Does this mean I shouldn't depend on the fact that I always manage to call for help? What happens when one day I can't get to the phone and dial 999? When other people have asked me that my answer has always been "but I always manage to call for help". Up until this time, I've always managed to 'hold on' for the paramedics to turn up before collapsing. There are a lot of 'always' in this, but now this survival mechanism doesn't seem dependable.

My respiratory nurse tried to talk to me about having a pendant alarm. I was horrified. Then my parents brought up the idea. I laughed and said old people need pendant alarms, not me, I'm 31.

I didn't intend to write about this. I hadn't even thought about this since leaving hospital. All of a sudden I feel very vulnerable.