Monday, 30 July 2012


Last wednesday I had another endoscopy at Chelsea, just to check again for any varicies (popping out/ leaking blood vessels in the food pipe), and if all the previous ones are still holding and A.O.K. The actual procedure was pretty all right - sedation, dimmed lights, nurses holding your head... it's all quite relaxing in a non-relaxing sort of way.

As I came round afterwards, there was a big sort of muddle, and I ended up chomping down a sandwich as I was told it was fine to eat. It wasn't. Short story short, my food pipe has been agony ever since. I haven't been able to eat or drink without having immense pain afterwards and a sort of reflux/heartburn sensation. Even eating tiny wee morsels of food and sipping drinks it's been hell. My appetite hasn't diminished, so it's proper torture. Friday night I said FUCK IT and got 3 pieces of fried chicken, chicken wings, chippies and a coke for din dins whilst slobbing out in front of the opening ceremony, and gobbled it all up despite the intense after burn. Yes yes, not wise at all. Fears of having lost weight and hunger made me a desperate chick.

Saturday night everything got stuck sort of half way down, and instead of slipping down after a few mins, it just got worse. Big cough to chuck it all up again and out comes not only a lovely chomped up half a sandwich, but loads of blood. Oh fuckity. They always ask me "have you vomited blood?" and woohoo, now I have.

Yesterday I went to A&E which was long and tedious and nothing really happened. All my blood results showed I wasn't actively loosing blood (yay), and blood count was pretty allright (yay), so they just sort of forgot about me - or really, fed me to the lions a.k.a psycho grannies on Acute Assessment ward. Oh joy. And I wasn't allowed ANY FOOD WHATSOEVER.

Today my nurse was a lady who used to be at the Brompton, so we had a good old bitch about it, and about crazy geriatrics, and endoscopies, and clueless pharmacists. She tried her best to get something to happen in the midst of a serious lack of doctors but to no real avail, however eventually I spotted Dr Steel: gastro doc extrordinare and endoscopy pro (it wasn't his fault, I blame agency nurses who don't read notes and me obviously residing in the 3rd circle of hell. See pic.). He was like a breath of fresh air clearing out the dead cobwebs of misinformation and hospital ward mismanagement, telling me straight away what was the problem, why it happened, and what I should do given that I thankfully haven't continued to lose any more blood in serious or grotesque circumstances. "Go home!" said he, "and eat nothing! Only liquids and nothing but from now until no pain is felt!" Food pipe has basically been narrowed considerably given all the banding was done in the same place, and the protruding tied-off dead varicies haven't fallen off yet, so it's even more narrow. Everything I swallow either gets stuck or has to push past these tender varicies, and because I had been eating it's made everything bleed and irritated. I imagine my oesophagus is a bit like Dante's hell. Gets worse as you go down...! (Rejection of sin? Rejection of food more like.)

Looks like a food pipe, right?

Now I have all my meds in liquid form (can't bloody wait to taste those monstrosities, can you imagine!? Liquid cipro?! EW) and a fridge full of Mars Refuel milkshakes and Oasis. I've given my current KFC, pizza, and steak&chips cravings a raincheck (without much luck to be fair), and instead will experience the extreme dieting lifestyle. Extreme dieting, high calorie style. Of course.

I was sort of hoping they might do another endo, and then I could miss my clinic at the Brompton tomorrow. No such luck. I just don't think i'm that lucky.

Update as of 12am: I'm never attempting to have liquid medicine EVER AGAIN. *shudder*

Update as of 31 July: Went to clinic, had a lucky escape with a surprisingly good lung function (76% FVC) despite having a nasty chest, a residual cold, and hardcore week! Really thought they were going to keep me in. I think the new lung function machine is the root of this surprisingly brill blow as my chest was rumble grumble city. At least this gives me a chance to get beneath this temporary cold induced cough and fling it out into the stratosphere without jepordising transplant availability. Lots of high cal supplements to take (YUCK) to make up for inability to eat solids. Short term pain for long term gain. Oh jeez...


  1. Finally found you!

    Well massive boo to the situation at hand my dear. Not the same scenario but what you have experienced is what our Sophie had with numerous oesophageal strictures and everything just getting stuck on the way down.

    She was in a huge amount of pain so I have every sympathy to what you have experienced. Stupid, inexperienced morons with pathetic after care!

    Cipro in syrup form is very grainy so be careful taking that little nugget and if you can handle something cold, try freezing whatever calorie drinks you have and make mini milk type ice lollies. You may be more inclined to have a small sense of enjoyment from them.

    Here's hoping your burning inferno settles soon and you can get back on the KFC train swiftly!


    1. Thanks for the tips Gem, def going to try freezing the nasty supplaments, i've never liked them! But a variation on a mini milk I could do!
      Poor Sophie, must have been worse for her being so young, at least I know this is only a temporary pain and will die down soon (well, I bloody hope so!). Not so easy to grasp when your a wee thing.
      I just wish they would read the report before offering food! You think in an endoscopy suite that's the first thing they'd check ! Honestly. And telling important info to heavily sedated people isn't that clever either...!


  2. Thanks for commenting on my blog I just spent a long while reading your blog and am so glad to find it.

    Nearly every post I read I wanted to comment on because I have been through so many of those things myself. From the varices to the fluid to the giant spleen and the endoscopies. I have never had any esophageal bleeds though. God that sounded scary. I'm glad you're ok! And I hope you can eat again soon pain free.

    I am hoping that you get your transplant very soon. I'm sorry that you are going through all this but I'm glad a found a fellow blogger who is waiting for a liver transplant.

    Oh and also I just have to say I just saw Moonrise Kingdom last week and it was so good! Wes Anderson is an all time favorite of mine. I wish I could escape to his whimsical worlds!

    1. I know it's awesome to find blogs by people that are leading similar-ish lives to you. Haven't found many liver people so glad I found you too! I look forward to reading all your posts - though 'look forward' seems an odd way of putting that when there'll prob be more tedious and crappy things to come. Damn livers! I just hope you get your call soon. Or bleep rather. So jealous you actually get a pager!? I was really hoping thats how they do it here but nooooo. All the best! X

    2. Yes it's very hard to find other bloggers waiting for liver transplants, especially young ones!

      I know I was pretty happy to get a pager. My nurse actually said, "Well I know some people don't like them so if you really don't want one you don't have to take it." But I obviously wanted it haha. Who wouldn't?

      "Looking forward" to reading more of your posts too. But hopefully soon they'll be about recovery and life after transplant rather then this waiting game!

  3. Aw no! That's so stoopid that they told you you could eat, I think that as a punishment they too should suffer a liquid diet. I hope it all gets sorted soon as and that you can get back to KFC binges! Can you eat ice lollies? They're a bit more fun than normal liquid (until they melt and you're all sticky...that's deff no fun, especially when bees start chasing you.)
    This will be no consolation, but you're actually very on trend right now with your liquid diet...all the rage in Essex haha! xxx

    Oooh by the way, I LOVED your last post!

    1. Yay you're back! Ice lollies hell yeah, as long as I don't get too greedy and start munching away...! I know right, BANG on trend. I feel very pseudo-essex-celeb, and now strangely have an urge to buy big sunnies and get a fake tan at Amy Child's salon. Seriously though, NO idea how people do this. It's so lame. Can't wait to hear about your hol ! xxx (oh and thank you, the long-ass poem one?)

    2. Don't forget the chihuahua, you need one of those too!
      Yeah the poetry one! Love a bit of Coleridge, did the Ancient Mariner at A-Level and loved it. The post before was also really good, I really want to read Herland now. xxx