Monday, 24 June 2013

Slight blip, admission, and back to normality

I had a week enjoying the delights of hotel NHS last week. I was admitted on Thurs 13th June and got home on the following Thursday.

Basically, the IVs of which I'd tried hard to persuade the dr that I needed a change of, didn't do the trick. When I started them, we kept one of my usual, colistin, and changed ceftaz, which I'd been using almost constantly for every dose of IVs, for 15 years, and switched it with Tazcocin. Now, I was kind of hoping this would kick my lungs into shape. Especially as it'd been a mere 3 weeks since my previous IVs and it was really starting to take the piss (insert ironic ceftaz piss related joke here). But with how quickly the cold I caught had wrecked havoc, I genuinely couldn't have even waited till my next clinic appointment. So IVs were started and I waited for the IV goodness to hit.

And waited.

And waited.

And instead of feeling better, I felt worse. pleurisy came back with a vengeance on some days, the hemos decided to join the party, and the exhaustion was starting to make me look like I'd taken up boxing (p.s. hammer to the face related injury from the other day had no play in these attractive dark circles under my eyes) So a week into this, and yes, all this started AFTER I started IVs, I decided that I wasn't putting up with this for a further week if I was going to continue to feel shite and not improve. I mean, 2 days after starting IVs, usually I can tell a noted difference. Mostly cos the crap in my chest can't wait to clear itself and I shift a serious amount. This time it was different. Horrible chest, horrible chest contents, a death rattle that would stay all day and give me a break for a mere 5 minutes after physio or hypertonic saline nebs, before starting up again. So I had my sister call the chest clinic. First mention of hemos and their ears perked up. Admission was mentioned, and I was told to come into clinic at 2ish to speak to the consultant. Even though he was quite busy running the chest clinic, the chest ward, and HDU. The outcome of this, was that they wanted to admit me straight away. The ward was full, so they had to send home one of the regulars that are always in and refuse to do home IVs, or generally, look after themselves. The doctor genuinely said that there are a few patients who 'treat the hospital like a hotel', and the girl who was sent home so I could have a bed, has basically been in pretty much every time I have too. Which isn't often, but its often enough. I don't understand why some people refuse to look after themselves. And obviously its hard for the drs to see what they're really like at home, so they can say they take everything, do all nebs/physio etc, when in fact they're not, and they've already got their bags packed basically to re-admit themselves. I know some people have no choice but to do IVs in hospital, which is fair enough, but some people just don't even try. Obviously the idea of spending so long in hospital, willingly, is mad to me, as I hate admissions from all aspects, and then some. But still..

Anyway, I digress. So, I did get a bed on Thurs, but the plan of action didn't exactly involve much. They gave me a steroid increase to 30mg whilst I was in, and made me finish the rest of the 2nd week on the same IVs. It didn't do much, but by the end of the 2nd week, my chest was a tad clearer and the hemos had stopped, but I wasn't 100%, so they put me back on old faithful, ceftaz and colo, for another week (and a half if we're being picky). So the drugs were changed half way through my week long stay, and I was able to go home on Thursday (after about 3 different doctors asking whether I preferred Thurs or Friday, I couldn't have chosen quicker to be honest. I had the pharmacy and a couple of nurses double checking the IVs to be delivered on Thurs afternoon at home, so I could finish the course. I thought it would only be a few days worth as three weeks would mean I finish either today or tomorrow, but I actually finish on Thurs coming, judging on the amounts of intermates in the fridge.

You'd think home IVs would make things so much simpler... and it usually does. However, the pharmacy managed to forget to give me one of the drugs, and delivered 14 (7 days worth) of ceftaz in intermates (when I usually have syringes, cos no one thought to check that part with me. TA!!) I got absolutely no colomycin at all, and both the delivery men and the hospital didn't have a clue what had happened. Lucky that it was colo, and that its simple to mix up, as I have plenty of vials from nebs, I know the dosage I need, and you only need to add saline to mix it. If it had been the other drug, we were probably looking at me going back into hospital until I could have some delivered (especially as deliveries are arses over Fridays/weekends). Basically I have to suck it up and mix my colo IV twice a day until Thursday evening which is my last dose. Not the worst thing to happen when some people have to mix up every drug, every time, but still, annoying to have the mess happen in the first place.

I'm just glad I was able to finish these at home, cos I don't personally notice a difference between home and hospital, other than the fact that I hate waiting on someone to bring me my IVs etc. I even had the joy of having to get someone to replace my port needle on the Tuesday. Our hospital says it should be replaced after 2 weeks, so I went down to clinic via insane wheelchair driving porter to get it changed. The nurse who did it said she was learning, and I'm fairly sure I was her first or one of her first attempts. She did well, despite poking me too hard on the edge where the tube connects whilst trying to get into the right position, but accessed it fine and it flushed fine too, even though she pushed it sooooo slowly, probably just out of nervousness. When I got back to the ward I noticed it felt weird, like it was sitting at an angle and I seemed to pull the skin around it when I moved my arm (or yawned...) I ignored it, but must have caught it at some point, as when it came to do my evening IVs, nothing would budge, and luckily my nurse for the night knew how to access ports, so 10 minutes later I already had a new one plonked in much more nicely.

But yes, it's nice being home and not worrying that you're a burden. It's nice to be able to see my parents whenever they're around, rather than just for the short while they visited (basically every day, sometimes with my sisters too) and it's nice to have been able to spend a couple of full days and entire weekend with my boyfriend rather than worrying about him driving home through newcastle at 1 in the morning. The handy thing about our unit is that as it's sort of separate from the rest of the ward, we don't strictly have visiting times. Which meant there were a few late night visits and trips to the hospital costa, and those are the things that keep you going just that little bit more. And obviously I've got massive love for gem, stiv and my old friend steph who all texted me loads and kept me company basically whilst I was in and they're a fair distance away so couldn't visit.

And as always, the photo spam.

 Being highly mature at clinic a couple of weeks ago

My room on the unit. No fridges anymore cos of infection control, but we do have ensuites (to the left of where I was standing) and flatscreens with freeview, so there are worse situations to be in. The sweltering heat wasn't helped by the minimal opening windows though, and we're not allowed fans "in case they blow up." Cos that's normal. 

Not the worst hospital food! apart from the tomato soup, vom. Our CF menus even come with nice trays :D

 We have a sign :D

 What I do when I'm bored, whilst either entertaining or pissing off the rest of the ward with my itunes blasting

 My favourite tray :D it's so me, I was seriously tempted to nick it if they wouldn't question it's disappearance 

Bored, can't sleep, so it's instagram selfie time, clearly.

Saturday, 1 June 2013

Because frankly, I need a good old rant

So, last IVs, lasted for 3 weeks (and weren't actually that necessary in the end. I'd asked for a further week due to still feeling run down, and that was actually due to the anaemia). My chest did feel better though, and the iron tablets have helped my energy levels go back up to normal, and I no longer look like I've had frequent meetings with various doors/walls/cupboards... you know, the usual stuff I bump into daily.

I think we all know what comes next. I caught a cold. The unfortunate part of having a younger sister, is having a younger sister who's still in school, and who likes to bring back all the manky germs that those little spawns of Satan enjoy to harbour. I tried my hardest not to catch the cold. And when I did, I tried my hardest to get rid of it. I did manage; it was gone within 3-4 days. Unfortunately it was a quick mover and I already had the dry tickly cough, which soon turned into the nasty chesty cough. It's awful having the dry cough, as it's constant, doesn't stop, none of the little tricks we know will stop it, and it's just exhausting. So you can't actually wait for it to progress as a chesty cough can be treated, and there's stuff you can actually do about it. But that also means a chesty cough needs antibiotics, and the simple stuff will just never do.

I'd happily take Cipro, or alternatives, if I could (or if they were offered...). For a long time now, cipro has been a no go for me, seeing as I never felt any better, my chest never changed, and it was pointless to put up with the utter loss of appetite and the silly 'don't take at the same time as milk' rules for two weeks. I did try once again last year, after feeling run down after my holiday, but the loss of appetite (which drs don't seem to want to believe, for some infuriating reason) was actually awful, I barely ate, and despite sticking with the entire two week course, I felt no change (and caught another cold during, so was back on IVs the week after).

Yesterday, after putting up with this chesty cough from hell (along with loss of appetite, tiredness, chest pain, chest gremlins, coughing fits that leave you gasping and needing to do extra nebs just to cope... should I carry on?) I had an impromptu hospital appointment at clinic, hoping they could sort me out. I knew this would mean antibiotics of some description, but I hated the idea of yet another course of the same IVs, when the well-ness hadn't even lasted as long as the previous course had. I pointed this out, that I'd have orals if I could (if someone would bloody stretch to something other than cipro. I was lied to and was told levofloxacin doesn't treat pseudo, and other suggestions were ignored, despite being told of these by other CFs with the same bug at different hospitals) or that if I had to have IVs, Id rather not have yet another round of ceft, the same drug I've had for about 15 years for just about every round of IVs, and colistin, which I've also had constantly without change, since switching tobramycin for that several years ago.

First suggestions were cipro. No thanks. Second was meropenum. I felt AWFUL on this drug, I remember not being able to go to school for a few days for feeling so rubbish, and sleeping for nearly 2 days straight. The dr who needs to sort out his God complex said 'Mero doesn't make you sleep. And whats so wrong with that anyway...' second suggestion was Tobramycin. I said no thanks, Id rather retain the little hearing I have left. Because there was never an actual conclusion to why I lost my hearing (was it down to a random gene that reacts to aminoclycides that anyone can have, or purely down to the levels being too high?) it's not something I'd like to risk right now when I have other options and I'm not that desperate. Finally, he said I could have Tazocin. He then tried to push Tazocin with oral cipro, and I said no. So as of Tuesday, I start Taz and Colo IVs, for two, three, who knows how many weeks (probably three I'd guess. I've never heard of anyone in my hospital having longer than 3 weeks of IVs all done at home).

I wish that I could say I went into this appointment, got the drugs sorted and left. Unfortunatly, I think the doctor was trying to kill some time of a Friday afternoon with no other patients, and decided to yap on about how he thinks I'm maybe 6 years or so away, mostly likely by my late 20s, from needing transplant.

Yeah, transplant. 

6 years away or 60 years away, I don't think this was the time to bring it up. I hated him even more in that instance, as transplant for me, is something far away in the future that I don't like to worry myself over. I'm aware that my life is most likely going to include one, unless the kalydeco for DF508 or anything else actually halted all decline and highly improved my quality of life. But I've always thought it was so many years away it was not something I had to rack my brains over at this instant. And I'm still not, I'm just so angry that the doctor thought it was a good conversation topic, with his shitty little prediction, when in 6 or so years, who knows how many changes in the medical world they'll be? And in my personal world? What if I stayed at this level of lung function for another 5-10 years before dropping anymore (my lung function is around 50-60%, another reason why transplant isn't exactly on the forefront of my mind), what if I caught a bug that made me decline fast? Either way, starting the conversation with 'Well at this rate of decline with your lung functions over the last 5 years...' and banging on about how I have quite bad scarring in my lungs (yes I KNOW thank you) and how my weight is still a bit too low for transplant level (fantastic, so in your eyes I have 6 years to increase my BMI one number up). It took so long to get to the point where we finally started to discuss IVs, as like I said, all orals were thrown off the table due to me not bothering with cipro and levo being veto'd by the doctor himself. Also doxycycline and chloramphenicol (as suggested by Gem and Mich) were both utterly ignored, as were my wonderings on whether my steroids, at 10mg a day for the past several years, could be a reason why I catch everything going.

There is a reason why we've renamed him Doctor Penis. My usual, fantastic doctor, who listens, and actually has medical training from this century (and a much, much better bedside manner) was away on his holidays. I'm hoping he'll be back on Tuesday when I go to start my IVs so I can have a good bitch, as the nurse I saw (and any other nurse, actually) didn't agree with why I was so angry at the doctor, and said 'Do you know what his job is? It's to keep you well enough for as long as possible until you need to actually go on the list.' And that's all fair and well. But trying to scare the utter bejesus out of me about something that is in the future (far, FAR fucking away in the bloody distant future) and taking an age to get to the point where he was actually going to prescribe something to help me in the present moment, the moment where I needed treatment to feel well again to ensure that future events don't move into sooner future events, is not a fucking good way to talk to patients. 

Even more annoyingly, amidst all the transplant annoyance, he went through every drug on my prescribed list and said 'Do you still take this? And that?'

Believe it or not, I try my hardest to be compliant, I take every medication and tablet and nebuliser I need to do. Talking to me like a patronising twat, as if I'm some stupid stubborn child who won't take their creon, is another reason why I hate to be in the same room as him.

The final little irritating nail in the coffin of annoyance, was the fact that his eyes couldn't seem to cope with the cleavage in the room. His eyes were darting everywhere from me and my older sister, and I'm so, so glad neither of us were wearing low cut tops, cos he would have had a heart attack in his old age to see any skin from the neck down.  

All I can really draw from this, is that it's hard to be a young woman trying to talk sense into a doctor who thinks he's god's gift and cannot be wrong, and refuses to admit he's set in his ancient ways. From what I've heard, other patients, male patients I should add, get on with him fine and find him a good doctor. Funnily enough, I've heard one or two complaints from them, but the majority come from other women. Basically, he's a sexist twat who really needs to retire. Or at least try and stop impersonating Simon Cowell with the hoiked up trousers.

Long year? Long post

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