Friday, 26 April 2013

Extended confinement at Hotel Brompton boo hiss

Yeah I knew i'd spoken too soon.

It went like this:

IVs randomly stopped > cold > nastier cold > cough > nastier cough

So um, another 2 weeks of IVs.

On a brighter note, JLS have split, which gave me a whole day of fabulous tweets, mostly from that Katie Weasel account and the #JLSwewillneverforgetyounotevenindeathbutImightaswellbedeadcosmyheartwontbeatagain hash tag. (Or something along those lines).

I saw this last night outside my room with a "To be condemned" note on it (one of the notes had lots of exclamation marks - some freak physio must get a litte rowdy at the thought of incineration/ putting something outside for the bin men), so thought i'd bagsie it to take home (exercise bug is still here... this is getting worrying). But then the one I wanted magically slash maliciously disappeared this morning leaving the other, substantially scruffier, one. However my stealth sign manoeuvres were all in vain as the physio said I wouldn't be allowed it, or either, ANYWAY. What a meanie. She obviously takes pleasure from others' pain (both humans' and machines' - at least she's not discriminatory, thank heavens for that) and so it was obviously her that took great delight in condemning those poor bikes to some mechanical hell. It was written in thick, evil,  red marker too. (Blood is a now a precious, heavily monitored commodity in hospitals (thanks NHS cuts) so no more scary notes or death threat letter-fun-times to be had). It's all a load of bureaucratic "health and safety" rubbish - why make us poor sick weak people suffer at the hands of an invisible Physiotherapy Tsar that dictates that because something is old it is dangerous and therefore unusable by those who desperately need it? Disabled abuse that is. Disabled, cheapskate abuse. 

Anyway I soldiered on through the heartache, only to be confronted by Mr. Consultant who made me burst into tears at the news my lung function is really shit and probably will never be as good as it was before transplant. Look here yeah, the deal was this would make it better, so I may consider asking for a refund. But then he said he actually hadn't looked at my X-Ray (to see if my diaphragm has been cured of it's vertigo and has come down), and was going on my snotty-cold lung function blow I did yesterday... mid fever-y cold. What a knob. So I was going to try pretend today didn't really happen, minus heart-broken fans, because they're funny.

However, I then pestered little junior doc ("Putty" I like to call them), into actually going to look at said X-rays - one from the beginning of my admission and the recent one, and lo and behold, how the mighty should have kept his insensitive trap firmly shut. Whose diaphragm has come down? Oh yeah. Given, not all the way, but the spectacular dome has now turned into a mild mole hill. (I'm going to stick with mild mole hill as that aliteration works nicely, but I don't actually know what a mole hill looks like. I think it must be flatter than a dome. This lack of mole knowledge is probably the one downside of living in a city.)

My theory was how do they know it can't be fixed given they don't know what caused it? It's not right that they can shatter my years of hard work, my FVC dreams*, my illusions of grandeur in one fell swoop. I know I said previously I like to know everything to do with my health, but with some things, especially ones that can't be fixed, I think i'd rather be kept in the dark - at least so I continue to strive for better instead of giving up. That's a dangerous place to be, and not a very nice one.

So i'll keep going with trying to get it down even more so I can fill these little things with as much air as I can, and getting rid of this god forsaken bitch of a cough. It's such a twat.

*Change "FVC" to "PVC" and i'm on to a porn-film winner.


  1. Ludicrous bunglings indeed, Laura. A bit thick, though, that they put you on a roller-coaster after everything you've already been through. xx

  2. Seem to have figured out how to comment, finally. It wasn't working when I went direct to Publish. Lost several little comments by making THAT mistake. This time, I went to preview, when I got to prove I'm not a robot and then publish, easy peasy. Lots of love, Linda xx

  3. So sorry to hear that you didn't get to go home. Booo! I hope you get to go home so so soon. It's about time they gave you a break already! Also such a load of junk that they told you your lungs will never be the same. Doctors are sometimes stupid. They do not know what determined people are capable of. Hope you are staying sane in that place! xo

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