I didn't realise that it had been a month since my last post - bad Dawn!
I'm plodding on through life, which is both good and bad. Work is still an issue, I'm not entirely sure where I stand and what is going on; I'm in a horrible position where I'm being told one thing by one person and then being told half of something else by someone else which doesn't match what I was told initially. I just wish people would be honest rather than think they're being nice and trying to spare my feelings, which in the long run ends up in making a situation even worse!!
I had an appointment at the Severe and Brittle Asthma Unit at Heartlands last week. I must admit, I wasn't feeling too hopeful before I went. Clinic was running 1.5 hrs behind when I got there so people were moaning, but then respiratory physiologist told me that Dr Mansur was running the clinic on his own which is why it was running so behind. Well, this made waiting over an hour worthwhile! I've wanted to see Dr Mansur from the beginning but every other time have ended up seeing one of his registrars, which is fine but they don't make any big decisions without discussing things through with Dr Mansur first, so I'd rather just see him in the first place!
First we discussed Bronchial Thermoplasty. I'd previously been told that I'd been ruled out for this treatment as I've had too many chest infections over the past year. Dr Mansur said he didn't want to rule it out straight away, but would look at my CT scans to see the extent of my Bronchiectasis. Apparently Bronchiectasis is a contraindication for Bronchial Thermoplasty, but they might go ahead if the Bronchiectasis is very mild. I have very mixed thoughts about this procedure, but I'll save that for another blog.
Then we discussed the subcutaneous Terbutaline infusion. This has been mentioned before, but Dr Mansur said that he now thought that should be our next step. I'd need to be admitted to hospital for 10-14 days, and have a trial of Terbutaline to see if it actually helps. Unfortunately, winter is not the best time to try to get an elective bed on a respiratory ward so Dr Mansur thinks it would probably be around March time. My local consultant had previously mentioned running the trial at my local hospital, so I mentioned this as it would obviously be much more convenient. The respiratory nurse specialist at Heartlands is going to liaise with my local respiratory team, and discuss where would be best placed to run the trial.
When the subcut infusion was first discussed, I was really optimistic that it would work. Since then I have tried Bambuterol tablets (which is a prodrug of Terbutaline) and unfortunately I simply couldn't tolerate them. I was shaky, couldn't sleep, and I had a constant severe headache which didn't respond to any medication and was severe enough to stop me from doing day to day life. So whilst I still want to give the Terbutaline a go, I'm not falling into the trap of thinking that this is my wonder drug, and is going to transform my life.