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.


Gem said...

I just don't understand why he bought transplant up in the first place if he still thinks it's 6 years away?! Everyone has bad patches and this could be what this is- he's being so narrow-minded about this. Does he not realise how fucking terrifying the thought of transplant (and the thought of being poorly enough for transplant) is for anyone? He should treat you (for now at least)for how you are at the moment. Anything could happen which could put off transplant. I just don't understand why he thought it was appropriate to bring this up now when it's potentially years away!

He needs a smack. In the face. With a table.

Loveyouuu xxxxxxxxxxxxx

Little Harriet said...

I can't believe that he brought up transplant! I could understand if you needed to think about being listed fairly soon but 6 years! That's just ridiculous! My lf is high 30s to low 40 yet my team haven't brought it up yet (they are great) as they know that it would scare the crap out of me. I think most pwcf have the transplant thought in the back of our minds but it's something you try not to think of until you have to.
How insensitive!


Grace O'Shea said...

Can't believe he mentioned transplant for 6 years time.. You can't make a prediction with CF that far in advance! Haha. I can see why you don't like him, that'd drive me up the wall, you know what IVs and orals work for you. As others have said, transplant is always in your mine but not necessarily topic of discussion when you're not ready..there are more sensitive ways of going about it haha. Hope the IVs go ok honey xx

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