Sunday, 5 May 2013

Week Two....

The trial of continuous subcutaneous infusion of terbutaline (CSIT) is over, and didn't exactly turn out the way any of us planned.

Following on from my last post, Monday morning came and I headed to the hospital for the syringe driver to be restarted for week two of the trial. I was actually feeling a little better compared to the previous week. Tuesday morning came and I wasn't feeling as great, but I had a friend stay over on Monday night so I put it down to being tired. Tuesday day wasn't too good, but I managed.
Tuesday night turned into a complete disaster. I have no idea what I was playing at. My lungs gradually became unhappier, and for 3 hours solid I was stuck to my nebuliser. I even used an epi-pen which I don't really remember doing. I should have called an ambulance, I kept thinking about calling an ambulance, I can't explain why I didn't. Eventually at midnight I started to feel better, I moved to the bedroom where I could get comfortable and doze a little.

Wednesday morning I went to clinic and burst into tears as soon as I sat down. I told the respiratory nurse specialist what had happened overnight and she wasn't impressed. She went and got my consultant out of his clinic, he also wasn't impressed and insisted on stopping the trial and admitting me. I argued a fair bit, but I didn't stand a chance. 

It turned out that week one was the placebo, and week two I was receiving terbutaline and due for a dose increase on the Wednesday. My consultant said it wasn't safe to continue with the trial. He couldn't be sure whether (1) I was actually reacting to the terbutaline (2) it was simply a case of my lungs playing up and the terbutaline wasn't doing anything (3) or my lungs were actually getting worse and the terbutaline had helped a little - even though I should have called an ambulance the previous night, I didn't but was okay after 3 hours of struggling to breathe. So he decided the best thing to do was stop the trial and admit me to hospital for monitoring. 

It felt like a complete waste of time. I spent the afternoon in outpatients waiting for a bed to become available on the respiratory ward. They found me a room that wasn't being used so I could get some sleep. Eventually I was moved to the respiratory ward at about 6pm, I still felt okay and slept a little and flicked through some magazines. 10pm I went to bed. 11pm I woke up coughing, within minutes I couldn't breathe. Luckily the nurse looking after me had looked after me before, she knew not to mess around and fast bleeped the doctor on call straight away. Things rapidly went downhill from there, respiratory arrest and transfer to intensive care. Luckily I improved with aminophylline, magnesium, adrenaline, hydrocortisone, nebs and being ventilated with a bag valve mask, and avoided being intubated and ventilated. The rest of my admission was undramatic; continued with my favourite medication, IV aminophylline, transferred back to the respiratory ward, gradually weaned down oxygen, all the usual steps in readiness of going home.

I managed to sweet talk the on call consultant into discharging me home yesterday. A surprisingly short hospital admission for me. Unfortunately I haven't been feeling too great since being home, but not bad enough to go back into hospital. My consultant doesn't know what to say about the CSIT trial, I'm going to have to wait until my next appointment at Heartlands for them to make a decision about what to do next......


  1. super sorry that the trial didnt work, thats a huge shame, fingers crossed the Heartlands have something else up their sleeves for u!!

    on other notes, i hope you hare feeling a lot better that during ur admission, ur lungs are certainly putting u through it!!

    massive hugs for u!!


    1. Thanks hun :) I'm feeling pretty fed up with it all right now - I'm sure you know that feeling! Heartlands in a few weeks so fingers crossed...... xxxx