Thursday, 8 August 2013

Not what I'm used to

When I get ill, as in, poorly needing IVs, I've almost always gotten away with a couple of weeks of my usual cocktail (colomycin and ceftaz over the last few years since we ditched the tobramycin for the colo in favour of grasping whatever hearing remains) just with simple home IVs. Maybe a third week if I've needed it... but nothing extra. All my hospital admissions since I changed to adult care, have been last minute things cos of feeling extra crappy, low sats requiring temporary oxygen for a few days - a week, and have always been through last minute quick appointments with the cf consultant, ether the day we phone up asking for a quick slot, or the day after. I can't remember the last time I was admitted straight from a regular routine check up. And I've always been quite pleased with my ability to stay out of hospital as much as possible.

Until Monday.

Two and a half weeks ago, I had a routine clinic appointment, which was slap bang in the middle of the massive heatwave that was hitting the UK from all angles. So naturally, I was putting down my exhaustion and coughing down to the heat, which I'm not used to at all. At that appointment, my sats were 93 (low for me but not too low to require o2) and my lung function had dropped a chunk of 15% or so within a few weeks since my previous appointment/admission where my original IVs hadn't worked. So that was a surprise, to see quite a drop not too long after finishing 3 1/2 weeks of IVs. We wondered if it was due to the heat, which I was hoping, or the tobi pod haler, as it was my month on. I was crossing my fingers hoping it wasn't, as the idea of having to ditch the inhaler and go back to the neb version, is almost soul destroying. Anyone who's had to sit with tobi neb for about 20 minutes with a dying eflow mesh (or any amount of time really) will understand due to the horrendous taste that makes you want to puke rather than continue to take it.

In concern for my reduced lung function, the dr scheduelled an appointment for 2 weeks later, opposed to the usual 6-8 weeks, to see if my lung function would creep back up after finishing the month of tobi pod, and also with some salt tablets cos of the goddamn heat. So two weeks passed and although I wasn't expecting amazing results, I was hoping I'd get away with scheduelling some IVs to start in a few days time, as my boyfriend was planning to take me back to keilder for a couple of days.

That, didn't go quiiiiite to plan. Sats of 89 (for someone who usually has them at 95-98 on room air, I'd been feeling it for weeks) I'd lost 1 1/2 kg in 2 weeks (understandable due to loosing my appetite entirely and also feeling constantly sick from all the coughing, I'd been eating only a few bites a day some days) annnnd a further CHUNK of lung function lost. I'm not sure what it is in %, it's never been this low for me, but its at 1.10L. 1.30L (which is was at the previous appt) was around 40ish % so frankly, I don't want to know the numbers. Numbers scare me, and I've been quite happy trying to keep my LF in the 50-60%. That said, 4 years ago I was hitting 80%. I have no idea where it went, but I'd so love that back one day. Anyway, with how shit I was feeling, so tired, out of breath, coughing and everything else, the dr just looked at everything and said straight away "I think you need to come in."

Well bollocks. I understand that was the right choice, no self respecting dr could possibly send me home in that state without a plan. I was just so annoyed that my lungs had managed to mess up one thing I had planned, and that the feeling crappy wasn't down to the heat and wasn't going to go away on it's own. There were no beds on the ward that day. Lucky really, I didn't bring much with me (there was a couple of days of clothes and meds in the car as we were meant to go straight to keilder, but I knew that wouldn't be enough, and was missing some of the more vital things). So I went back to my boyfriends, stayed the night, and went home in the morning where we phoned the ward to find out if they had a bed. They did. I had a quick shower (always important to grab the last full shower before being accessed!) and packed my bag and was wheelchaired up to ward 52 as I was too tired to walk around the hospital.

 Toobs in abundance. (Not boobs, Gem. I'm not that lucky in that department...)

Sats of 87, a temperature, high CRP, low white blood cell count, a blood gas, some antisickness tablets and an xray later... I'm on 3 IVs 3 times a day and 24/7 oxygen until the damn sats go back up on their own. I'm on my usual colomycin and ceftaz (although theyre usually only twice a day too) and aztreonam IV. This one is new for me, but I've been hearing amazing stuff off others who've used the neb or the IV, so I'm so hoping that my lung function and sats go back up, along with my weight and then I can break free and enjoy the rest of the plans we have for August. The dr is playing around with the 'you may be borderline' game again, but in the 3 days I've been here so far, no one has taken my blood sugars, despite the fact that he's been asking every day. I don't see why they don't just give me a little monitor myself and I can check when they want me to. I do my own IVs, physio, nebs and tablets in here so I don't see why I don't do that too.

Whilst I've been here (I can tell I still feel shit as I'm not getting fidgetty yet. I know I need to stay till I improve some, and I've been told I'll be here at least over the weekend) Gem and Stiv have been entertaining me via snapchat. I may have abused the screenshot option a bit much and now my photo gallery is full of Gem's face.


Despite feeling poop, I did manage to have an amazing birthday on Saturday (even wore a dress, but there's no photographic evidence of that...) and had the best. cake. EVER. Be jealous... 


All this aside, if you haven't read it yet, you should go straight to Kirstie's blog and read her latest post. Keep her in her thoughts, keep all appendages crossed, send mendy vibes, whatever you choose. I hope so much that she can kick all this in the bum and come out top once again.

World mental heath day

So today was World mental health day. It seems a shame that so many people only feel able to speak out about mental health on one day of the...