A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Saturday, 2 October 2010

Plumbed in and switched on

It's a wee while since I last posted, when I was only a few days away from getting my new permanent plumbing in the form of a portacath. I was a tad nervous about the op, but Dr G gave me a small amount of medication to relax me so that I wasn't really bothered about what was going on, and that worked a treat. Before the whole thing started I had to have a single (but rather large) injection of a powerful antibiotic to ensure that the MRSA I carry doesn't infect the surgery wound, and this of course meant getting an IV line in, but seeing as I was getting the portacath put in because getting IV access in me is very difficult these days, it was not the easiest thing to do and the ward sister who was doing it said she could see why I was having the port fitted. Anyway, she eventually got access, and tentatively gave me the meds - teicoplanin - just in case I were to have an allergic reaction to it. Dr G was fairly confident that I wouldn't, but they can't be 100% sure until it's proved either way. Thankfully all went well and an hour or so later I was in theatre. I was given some local anaesthetic and then Dr G started the procedure, which at first I couldn't feel anything of, but then suddenly could as he pushed his finger through my chest muscles to make a hole for the portacath to sit in. It hurt. A lot. I managed not to say anything, but the pained expression clearly showed on my face and I was quickly given some more local anaesthetic. After that there was just a bit of pushing and prodding, and slightly weird feelings on the inside as the catheter bit of the portacath was pushed inside and assessed for length. At first it was all a bit odd and I wondered if I'd just get used to the feeling of the catheter inside my vein, but shortly after Dr G attached the port bit to the catheter bit he decided that the catheter bit was too long, so he pulled it a little way out, cut a smidgen off, and all of a sudden all weird sensation disappeared. The portacath was sewn into place, my skin was pulled together and stuck together with industrial-strength steristrips, a dressing was put over the whole lot and I was taken back to the ward. I was in theatre for perhaps an hour and a half - a little longer than they'd originally thought it'd be - and then I had an x-ray to check that all was okay and there hadn't been any complicating lung collapse or the likes. All clear, a little rest on the ward, and then I was free for my mum and step-dad to take me home. Marvellous! It was a little sore for a few days, but you don't expect to be pain free when you've had a man come at your chest with a knife, push his finger through your chest muscles, and then insert a piece of metal with a plastic tail into you, do you? It wasn't awful though and a regular combination of codeine and paracetamol settled it fairly well.

A little over a week later and I was at the GP surgery because I've been getting neuropathy in my hands. The doc examined me and has decided that I most likely have carpal tunnel syndrome :o( and she's referring me to plastics, which seems a bit odd as you'd expect neurology to deal with nerves etc, but apparently it's plastics who 'do' carpal tunnel syndrome. I'm told they'll do a nerve conduction test (whatever that might be), and if it tests positive then the likely outcome is a small operation to reduce the pressure on the offending nerve - the medial nerve, I think. So yes, that's why I went to the GP, but after we'd covered that she asked, 'So, can I ask? How's you're breathing?' Seeing as I couldn't speak in full sentences it would've been foolish to try to persuade her that I was okay, so I came clean and said that it wasn't great, and that yes, I was had deteriorated a little since I saw one of the other GPs two weeks previously. She had a listen to my lungs. She wasn't very impressed. Actually she looked a little scared, but she was an F2 trainee GP so perhaps hasn't come across an awful lot of awful asthmatics. She left the room and got her supervising GP - Dr Cn - who knows me very well. Now he's seen me a lot worse, but he wasn't happy with me either and both 'strongly recommended' that I go to hospital. I conceded. To be honest I was tired of the struggle that had been getting worse over recent times, and while I was at the surgery they got through to the ward and arranged a bed for me. Now, as is my wont, I almost always have something much more pressing to do than immediately go to hospital, and this time it was that I needed to get home to let the man from the council come in to check the electrics of the new ventilation system. It was supposed to have been done the previous week, but I'd had to cancel it as the appointment clashed with my portacath operation, and suddenly it seemed the worst thing in the world to let him down and not be in at the re-arranged time. The docs were a little confused as to my insistence that this was more important than getting to hospital, but Dr Cn does at least know my strange ways when I'm ill, and decided that I was safe enough to do this. As it turned out, the ward didn't have a bed until 1pm anyway (and it was currently around 10.50am) so I'd have been hanging around the surgery for ages. I was better off at home where I could gather my hospital bag, my meds, sort out the cat, and, of course, let the man from the council do the checking he needed to do.

I went home. I was okay. Well, I was sort of okay, in a kind of Becky-ish way. I texted W to let her know what was happening, and she wasn't surprised to hear that I was being admitted as she'd seen me just 36 hours previously and was concerned. She came right over and waited with me until it was time to come up to the hospital ... although actually we had to wait a little while as W's lungs were naff too and she needed to nebulise before she could drive me up to the hospital.

When I got to the ward I was still in that 'not too bad for Becky' kind of state, but as seems to happen sometimes when I've been deteriorating over a while and then get to somewhere 'safe' to splat, I did then splat and ended up quite poorly :o( We'd been hoping not to have to use my new plumbing quite so soon, but it wasn't long before it became evident that it was going to be put to use. But oh my word, how amazing! It's fantastic! No pain. No farting around with endless cannulae. No panic while trying to get a needle into a vein that doesn't want to be stabbed or have a needle put into it. No hassle. Just get the technique right, plug me in and set me going! Amazing! Wonderful! Awesome! And no hassle since, either. No problems with the lines stopping working, or leaking, or giving up, or getting caught and being pulled out. Nothing. Just straightforward, continual clear running. Huge relief. It's the best thing ever! Can you tell that I quite like it? ;oP So yes, while it was unfortunate that it was needed so soon after being implanted it has made that little bit of hospital life so much easier. However, the night wasn't easy and I was really quite ill. My blood gases were a bit of a mixed bag, with my pO2 being okay, but my pCO2 being a little too high for comfort, and that's a concern. That's the one that indicates how tired you're getting, and rather than coming down it was getting higher. Thankfully I managed to avoid ITU, although the outreach team did come to see me several times over the next several days to keep an eye on me and to keep reassessing whether or not I needed to be transferred to ITU. I don't like it there though and will do all I can to stay up on the ward. Anyway, I avoided it :o)

The night was a long night; a breathless and scary night. The registrar who was on call was worried, and although she'd gone home at about 1am she kept phoning the ward to see how I was, and at about 5am she said she was too worried, was giving up on sleep and coming in to be with me. Bless her. I was utterly exhausted, but still just about holding my own, and then things gradually started to ease, and eventually I fell asleep for a short time, although breathing remained hard work for the rest of the day, the following night and into the next morning. And then I slept. And I slept. And I slept. And then I slept some more. And then I started to feel a little bit more human although still very tired.

We started to tentatively reduce the aminophylline infusion from 50ml/hr to 40ml/hr, and that seemed to go okay, so 24 hours later we reduced it again to 20ml/hr. That started off okay, but then I woke up in the middle of the night unable to breathe and back at square one, with rising pCO2 again, ineffective nebulisers, ITU back up here for 3 hours and outreach keeping returning to check on me. I felt awful. I was scared. I was exhausted. I would've cried if I'd had the energy or the breath, but I had neither. I prayed and I prayed, and I texted my friends asking them for prayer too, and my friends texted back with both prayer and other support, keeping me sane in the scariness of it all. I think the medical staff probably find it odd that I often text when I'm really ill, but it's such a lonely, isolated time, and there's so much going round in my head that I'm not able to speak as I don't have the breath, but which I can say in text with ease. And wherever they are in the country, my friends have been there for me and sat with me in the dark at the end of the text line and seen me through the fearful events, and the painful tests, and the desperate fight for breath, and the complete exhaustion. And I know that they are worried and scared too, but they stay there with me all the same. They are amazing. They give me strength and fight, and they let me know that I'm not alone.

Eventually I made it through the relapse and I slept for another 36 hours with my head full of violent dreams about death, attack, beatings, fear. Little of it was truly restful and I kept waking for brief times full of fear, but too exhausted to stay awake, so I fell back into another, different violent dream. I'm still finding my dreams are violent and vicious and frightening - this phase persisting longer than usual - but perhaps that's because there was such a bad set-back that my body and mind weren't prepared for another assault so quickly on the heels of the first.

At last I am eventually feeling more human - human enough to have the computer out this evening and be updating you on recent times. I am still tired. I'm still on the oxygen and the aminophylline infusion, but the dose has been reduced again this afternoon back to 20ml/hr (it had been put back up to 50ml/hr when I relapsed) ... so now I'm back to where I was the night before I had the set-back. I've no reason to believe that the same thing will happen again, and I actually feel a little more stable this time round than I did last time, but it's always a little anxiety provoking and I won't be counting any chickens of any kind until the drip is down successfully.

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