After my last whinging post, I thought I should write something less miserable and whiny!
I finally managed to have an appointment with a respiratory physiotherapist, which was much more helpful than I was anticipating :) She has written to my consultant to recommend that I start Carbocisteine, it's a medication which makes sputum less thick so it's easier to cough up. She went through the Autogenic Drainage (a breathing technique to clear sputum) and explained how we could adapt it to suit me. When a physio tried to go through it with me before, I really struggled with the control needed so I gave up with that technique pretty quickly! The physio also gave me an Acapella to use along with AD. I must admit, I'm quite lazy when it comes to doing things like this when I'm feeling well but that is what I need to be doing, so I can become better at doing it and increase the frequency when I'm poorly.
I've had to stop the steroid nebs which were started whilst I was inpatient at Heartlands. I started to notice that within minutes of using them, I was becoming wheezy, coughing, and my sats and peak flow were dropping. It's very strange as that wasn't happening when I first started on them! I spoke to the respiratory nurse at Heartlands, I was hoping she'd say to switch over to a different type of steroid neb but she said to stop the steroid nebs, go back on my original doses of steroid inhalers, and I'd be reviewed in clinic (I'm still waiting for that appointment!)
Oh and an update on the subcut Terbutaline trial. The team at Heartlands are claiming they didn't know anything about my cardiac history, and if they had known then they wouldn't have wanted to do the trial anyway! Absolute rubbish, I know it's been on letters from my local consultant, I'm on cardiac medication and I've spoken about my cardiac history - there is no way they didn't know! I think it's more likely that they overlooked it and only realised their error when I said I'd had some chest pain whilst on the trial (which I said was muscular pain anyway). I'm a little annoyed about that; a two week admission which was a bit of a waste of time! So, the latest update I had from the respiratory nurse regarding the results of the trial was that they think the subcut Terbutaline did help slightly (which I didn't think/see) but they're waiting for information from my local consultant about my cardiac history before making a decision on whether it should be a long term treatment for me. I don't think it helped anyway so I can't say I'm bothered by all this waiting for the decision!