Friday, 10 June 2016

What a day

Corr, reading over last week's blog, that weekend out seems so long ago now. So where were we... the docs had changed my meds up again and reduced steroids and halved my nebs. There were no improvements from this, in fact my lung function and infection levels were getting worse, so on Tuesday Dr Orchard came up with another plan (love a man with a plan!), which was to up the steroids again but do them through IVs instead so they are going directly into my bloodstream as opposed to through my stomach. This way would be faster acting and more effective. He wanted to trial this for just 48 hours and if there wasn't any improvement on Thursday, the next step was Aminopholin through IV. Again, I was on this orally at the time. If it came to this though, I'd need to move wards.

Thursday came around, which is probably the day that is least fun on the ward. They do the fire alarm testing at 8am for an hour, which is fine as I'm usually up around 8/8.30 but the noise is so piercing and just goes straight through you lol. For an hour. Then bloods, eww. After that though it picks up as the lovely aromatherapy lady comes round and gives a massage- highlight of the week woo :D I was super confident that my lung function had come up; I felt good, I could breathe, I was in a positive mindset.... So I asked to do it and couldn't believe it had gone down! 33%, lower than when I came in :( I was obviously disappointed, but I was OK and knew a plan was already in place for this circumstance. So I went back to my room and saw the doc who confirmed I was moving wards to start Ami IV. Packed and waiting to go, my daddy turned up just in time to come with me :) I must say, for me at least, I was very relaxed about the whole thing haha.

The ward is a high dependancy unit, which sounds scarier than it is. It's just that on the Ami IV I need to have my heart rate monitored continuously as the drug can make it go really high. Hopefully though, this will open up all the little airways in my lungs so that the other medicines I am doing can reach those areas to clear the infection.

It was all going so well until they told me I needed another access done. I have my port in my chest, which is where my IVs go through, but as the Ami is supposed to be going 24/7, I needed another tube in somewhere. Over the years I've had psychological help getting over my needle phobia and have coping strategies to help me get through blood tests, port access', blood sugars, insulin pens etc. But for some reason this really freaked me out. Reflecting on it this morning, I think all the day's events had caught up with me: the disappointment of the last 6 weeks of meds having no effect on my health; my lung function dropping still; moving from a ward where I felt comfortable and knew everyone to a ward I'd never been to and didn't know anyone or what to expect; then being told I needed another access done- a cannula at that, which are notoriously unreliable lol. So I'd say out of 10, my anxiety was like about a 5. The nurse asked if I'd like to try something for the anxiety; I said yes and she gave me a diazepam. I've had it once before when I was much younger. It's a pretty regular anti-anxiety to give someone.

Then she came back to do the cannula and I just lost it: crying, panicking, refused the cannula. The lovely nurse said that was fine and we managed to just alternate my meds through the port. It would have been fine if it had all stopped there but it was like I had opened a floodgate! I couldn't stop crying, literally for about 3 hours. Alex and mum were up at 7.30ish and I was just beside myself, I still don't really know why. If you'd seen me, you wouldn't have recognised me. It's embarrassing looking back on it now lol. I was angry, scared, shaking, bawling, couldn't catch my breath, hot and cold, confused, irritable... just a mess! Poor mum and Al for having to be with me during it, it can't have been nice for them but they were so, so, so helpful and didn't give up trying to calm me down. They were absolute angels, as ever <3 By 9.30pm I was exhausted and was regaining control of my breathing and the panic/anxiety/not sure what to call it! They left me with the wonderful nurses up here who checked on me at least every half hour at first and then every 2 hours during the night for obs and ECGs.

I can't, of course, be sure but I do think the "attack" was due to the diazepam. It's supposed to be anti-anxiety but I feel it did the opposite for me. I read the side effects and it is possible. Plus the last time I had it when I was younger, I remember having a similar experience. So I don't ever want to take it again, it's just not for me.

This morning the nurse said that during the night all of a sudden my obs improved loads- eeeekkkkk :D my heart rate went down, my O2 was 97%. Not sure if it's still like this now but it's a bit of hope that this med might actually make a difference.

I still have to have another access done, but I'm having some tube that I can't remember the name of, put in by a specialist. The plan was to have that done yesterday, but he was away so that's why the cannula was going to be done. Fingers crossed for a smooth and pain free day.

Until next time xo

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