Now that is what I call a cliffhanger ending to a working week – well played Drs! Day 33 & 34 (Friday and Saturday of week 5 of The Incarceration of Death Toe)

At the time of starting this post, its… 7.15am Saturday morning, nearing the end of having been in here five full weeks and I thought I would use my very awake state to give everyone a Death Toe update…

I am SO awake as firstly didn’t type anything last night – don’t actually remember going to bed really, I suspect I was pretty zonked – I remember going to get some oramorph when Death Toe kicked off in the middle of the night and I remember talking absolute utter total bollocks to the nurses, along the lines of them coming to redress my toe – to which they were looking at me along the lines of “not at 3am sweetie…”

I then just got quite slowly woken by morning obs starting (this was about 6  ish), but the slowly woken where you are lying very very still on your back and realise that if you move you are going to pee yourself, as your bladder reached full capacity a few hours ago. So I went to pee… and had a horrible half-asleep Jurassic Park moment that has THOROUGHLY awakened my brain 😦

A little old lady spent about… two full minutes trying veeeeerrrrryyyy determinedly to break into the toilet I was in, despite the usual calls of “its occupied” and “someone is IN HERE” – think velociraptor kitchen scene with the handle slowly depressing >.< I’ll be honest that scene is all that was going through my head. My pee was scared and I was sitting there thinking “…as a safety feature, you have to be able to open these doors from the outside… What if she has learned that?!” The whole “Clever girl….” clip was also going through my head. I sodding hate Jurassic Park haha 😀 A nurse came to save me eventually and persuaded her to use the other loo on the other side of the corridor within less than a metre.

Yesterday was Day 33 – a Friday – and a bit of a weird cliffhanger one in terms of medical updates, so I THINK I know what is going on, but that is from piecing together various bits and filling in the gaps a little…

My proper day started off a bit unpleasantly, just because I woke to The Three Musketeers standing around looking through my chart, having dozed off whilst breakfast was still being served out and they were obviously doing very early rounds. It is just a strange thing to have absolutely no privacy at any moment and waking with three effectively strange men next to your bed – and then scrambling to wake up so I could use the chance to talk to them productively….

The main discussion focussed on my eyesight – the most vague bedside test for peripheral vision was conducted (think wiggling fingers – two moments after I had woken up…), I was told that my CRP was less than six and they wandered off whilst I was still trying to sip enough water to be able to talk. Not entirely chuffed with the whole thing 😦 I then had a visit to the eye doc (ophthalmologist!!) – this flare has been making itself obvious with the narcoleptic-type head-nod fatigue, so I was aware of having passed out so so many times with micro-naps in the waiting room – its partly funny, but also a bit scary as I have absolutely no control over it sometimes.

The very good news from the eye exam is that there are no signs of small vessel inflammation at the back of my eyes – which is awesome as who wants that! – it is basically looking unlikely that the recently developed blurred vision is caused by anything vascular, which makes it less likely to be a serious, progressive or permanent change! The bad news is that my eyesight is nothing like as good as it was previously – I can normally read every line on those eye exam light box screens, but only six months since bossing my last eye test, I couldn’t manage the bottom two lines and had a real struggle with the two above that. The problem is getting a clear focus at any distance – faces and typing this are equally hard to get my usual sharp crisp image of. This is being double checked on Thursday, but it is looking like the vision issue is either a med side effect (like the tremoring) or a related autoimmune thing making itself known for the first time, the most likely suspect being Sjögren’s syndrome (show-grins!). It will basically be just buddying along with whatever type of vasculitis I have and is a very common one to be a secondary disease… and should be treated equally well with whatever immunosuppressant I receive. Assuming I am self-diagnosing myself correctly, this has just kicked off because I had to stop the methotrexate because of the infection, so there is nothing currently holding my immune system back. Flare central!

The other bit of nice news from Friday is that I was told by the nurses that I was finishing the antibiotics. I clarified that my CRP levels from my most recent blood tests was less than six (means perfectly acceptable liver inflammation markers, which means not showing any times of fighting off an infection at the moment!) and the swab of Death Toe from… a week ago? – was clear. A swab was taken Thursday as well as more blood tests, but assumption is infection gone and last night I had my last bag of benzyl penicillin and my last horrible clarithromycin pills and WAS CANNNULA FREE going to sleep for first night in nearly five weeks!!!

I also got advised that the cryo test done on Thursday was negative. Given this was to be sent to Preston and I had thought it was a long test process of spinning, chilling and heating etc. I am stunningly confused by the speed that this has come back and a little suspicious that I have understood that correctly as it didn’t come from any of the Rheumy Team. If it is an absolutely definitive negative test, it would mean that they really need to kick the cryoglobulinaemia diagnosis to the kerb, as I have still only ever had one positive test. This is… weirdly upsetting. You get quite used to a diagnosis when you have had it for over six months, researched the crap out of it, it fits all of your symptoms and you know more about it that the vast majority of doctors in the UK. I think Mum picked up a bit on what I was feeling, as we had a conversation last night along the lines of ‘just remember, your toe is actually falling off, you are actually ill and you have been ill now for coming up two years’ – there was a sense of relief in June (approx.) when I did get the cryo diagnosis as by that point I had been feeling shit for 18 months with all of the signs of a rampaging autoimmune process of some kinds, but never getting any positive blood tests. I know a lot of other people with autoimmune conditions share the same long wait between illness and diagnosis, but to be given an answer for a few months and then have it taken away again feels unfair 😦 I do struggle a lot with paranoia that everyone thinks I am being a hypochondriac – or that I actually AM a hypochondriac – paranoid about being paranoid 😀 So it feels really necessary sometimes to have my friends and family tell me bluntly that I am knackered and if I was an old dog, I’d have been taken out behind the barn and shot…

Re the cryo result, I am going to have to wait now (it being the sodding weekend) until this is confirmed by my Dr on Monday (hopefully!) but it puts more emphasis on the biopsy result… It also makes a definite run at rituximab less of a guarantee as this was fought for at a funding level on the basis of a cryo diagnosis – and is not necessarily the next step drug normally tried after meth for whatever I DO have. If there is any possibility of fighting for it to be used instead of cyclophosphamide – e.g. any previous studies or precedent that is what I will be pushing for – hopefully with some bloody contact with Addenbrookes to back me up >.<

The sideways featured picture has a story, it isn’t JUST me being a weirdo… As mentioned, I had a lovely visit off Mum on Thursday evening, which was much required as I had spent quite a few days this last week crying down the phone to her, which was upsetting on both fronts. She is currently now with my aunties doing a bit of an annual traditional girls shopping weekend away, something I am obviously having to miss and am more than a bit gutted about. It will involve lots of crisps and gin in hotel rooms and ridiculous levels of outlet sale rack carnage… Now I was born without that ability to coordinate colours or wear anything and make it look remotely like a put together outfit. One of my aunts in particular struggles with this… So I sent this to upset her whilst she is too far away to be able to do anything about it!! There are a few women in my family who have several different lipsticks on them at all times, coordinate their earrings beautifully with their snazzy lime green sketchers… I definitely missed out on those genes; they wouldn’t dream of wearing anything as dossy as the featured pink/red/purple combo 😀 The different patterns and textures of the hat, jumper, long arm warmers, floral patterned light dress and the leggings out of shot sings to ME- I am a texture fiend 😀 But if I had gone to Chester and tried to get away with that, she genuinely wouldn’t have let me leave the hotel haha 😀 The nice bit is she still seems content to blame it on a deprived childhood… and they are all good at throwing armfuls of stuff at me to try on, so I do usually come away with one or two things that are not entirely hideous  😉

They all have instructions to message me pictures of any exciting things so I can buy from a distance and one of my cousins has apparently been designated for unicorn slipper watch – a little side mission I have to get a small Christmas pressie for my friend’s daughter… I would buy some for myself in a heartbeat but Death Toe makes even slippers very painful. Not too sure when I will be able to wear shoes again :/ As mentioned at the end of the last post, I kicked my iv stand very late on Thursday night so was awake off my face on morphine for quite a few hours on etsy, searching for ‘unicorn’ and many associated things  😮 dangerous… It seems that non-essential stuff like mugs are the safer things for me to look at in terms of the fact I will have a whole house to furnish/stock in the next few months. I am finding I am stacking up a fabulous basket on etsy, but then quite safely not going to the checkout, as I have no idea when I would even be going home let alone have a finished kitchen. I definitely don’t need 20 mugs with unicorn patterns on them, but it is a nice way to distract myself in the middle of the night when I’m in pain. Hospital has been good for that side of me really… I wouldn’t say I spend a huge amount on clothes or anything in particular really -I don’t earn enough to and have never had a lot of surplus cash after mortgage, bills etc… But living from one bag for five weeks has really hit home how little I actually need in terms of clothing particularly. Yes, I feel like a bit of a dosser, but I am managing very well with the same two skirts, jumpers, leggings, pj bottoms, vest tops… As long as someone plays washing fairy 😀 Thanks to my faves and my Grandma 😉 The only thing I HAVE ordered is a nifty headband (recommended by one of the vasci family!) that has built in earphones so you can sleep more comfortably with music on low – my mp3 has been my best friend in here to block out ward noises and the varyingly hideous bodily functions going on all aroud me, but it is a bit uncomfy sleeping with ear buds in. Presuming it will fit through the letterbox so someone can bring it in for me???

Oooo music 😀 Having a youtube wander and one of my faves has popped on from… Was it this summer or earlier? Definitely feeling a bit better energy wise today, as I can cope with this and if I could stand up I would be having a skank!! Hospital skanking…

Have confirmed as well that since coming in (five full weeks now) have steadily lost 3.5kg – – which is over half a stone! This really isn’t a lot in the scheme of things (my polite way of referring to the fact that I can quite easily spare it 😉 ) but it is very exciting as I am eating the occasional bowl of sticky toffee pudding and custard and the occasional 3am fistful of pringles, as well as being barely able to hobble with a stick and my exercise consisting of doing a lap to the reception desk and back. For sheer lack of anything to do, I have been a bit obsessed with finding things to compare that weight so I can visualise it – apparently it is for example equivalent to seven guinea pigs! Or 1117 tea bags… I think the below is my fave… except for the grammar :/ That upset me.

jkk

BREAKING NEWS!

With the newer symptoms (blurry vision, dry mouth and lips and the increased hoarseness of what was already a rather un-ladylike growl) having been raised the other day, ENT just had a five minute gap and I got whisked away at breakneck speed. Found the usual case with Drs and consultants – it was the nurse in there who actually explained most of what was going on, but I had some local anaesthetic sprayed up my nose and a camera shoved down my throat!! There wasn’t a lot of warning for this, so I had to just find my happy place and close my eyes… Turns out I have really obvious silent reflux, which will be causing the hoarseness and could also be explaining the dry mouth and fact I can’t really taste anything! If that is the case, it will be exacerbating the dry mouth if I do have this Sjögren’s syndrome thing that the Drs keep muttering about – and it has got worse since being on the higher steroid dose, even though on omeprazole, so that also ties in nicely. Think I basically have to have gaviscon or something now forever? Maybe my voice will go all ladylike and sweet 😀 😀

EDIT:

So one of the ward sisters has printed off the cryo result for me and it is indeed the sample that was taken on Thursday. The sample that was taken with me high off my face on oramorph begging them to do the test properly as it was so important. I am HIGHLY doubtful that it had time to go to Preston to be processed in time for a result to be back on Friday and entered onto the system…But even if it was sent to Preston, I am wondering where I stand with asking that it is redone (and sent to Preston if this is what it needs) with my consultant actually being present. As sure, the sample was walked out of the room in a clenched fist, but even the time alone it took for my blood to flow (think knackered veins plus sludge blood) would have been enough for the temp to drop a crucial few degrees. Which according to the below – just the first two I found on google – is enough to invalidate the test.

http://www.pathology.leedsth.nhs.uk/pathology/Departments/SpecialistLaboratoryMedicineSLM/Immunology/ImmunologyPolicies/PolicyonCryoglobulinDetermination.aspx

Cryoglobulin Determination

Questions being…

  • Did it actually go to Preston?
  • If new protocol in place as I was advised, what differences were there at all between this and previous tests, as the sample was still held in the hand and walked out of the room…
  • I didn’t see or hear mention of a water bath or flask of temp controlled sand at 37 degrees – the tube was filled, held in the hand of the path nurse and then walked out of the room in her fist once a sticker was sorted out
  • When they were doing it, they pointed out that they had done the test before on me and I was in full agreement – in the enthusiastic way only Kath on morphine can be – and pointed out it was being redone because it was SO important that the sample stay at 37 degrees…. AGAIN
  • Even just the time taken for my ridiculous sludge blood to draw into the tube would surely have been enough for it to drop the crucial few degrees?

ALSO.. whilst looking at all of this, most of the articles I am coming across for cryo are mentioning an enlarged spleen… Has anyone even looked at my spleen? NOT THAT I AM AWARE OF!!! Gah >.<

4 thoughts on “Now that is what I call a cliffhanger ending to a working week – well played Drs! Day 33 & 34 (Friday and Saturday of week 5 of The Incarceration of Death Toe)

  1. Hi Again,Kath. Boy what a blog today!! My friend round the corner has the same eye condition as you mentioned—secondary to her Polymyalgia!! She has to use special eye drops and Gel, to keep a little moisture in her eyes!! She also has further complications—cataracts and Glaucoma in both eyes—she is now 81 years old!!!!! I’ll have to hold onto this blog and read again—-to take it all in !! The wee video exert was a funny comparison to your toilet door experience!!! Must stop here, have to prepare dinner, maybe get back later!! You really are a super trooper!! Lol, Peggy in Scotland!!

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  2. Nina Powell says:

    Hi Kath, I have a relative with cryo – my Mum who I believe you have come across on vasculitis uk fb page. She has had cryo for upwards of 5 years and is lucky to be under the care of Addenbrookes. Her cryo tests are ALWAYS put into warm water flask immediately and result takes 48-72 hours to come through. If this protocol is deviated from even slightly the test has to be redone on the next visit as it fails. If you want to know any more detail about what Mum’s treatment has involved please feel free to email or pm me – I probably remember more about what she has had done than she does as she can be a little foggy at times and I accompany her for all appts as she can’t drive. All the best x

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    • Nina – thank you, its one thing researching this myself and believing that to be the case, but that actually gives me a bit of a wall behind me. Especially given I have made my wishes to be cared for down at Addenbrookes clear for…. at,least 4 weeks now!! I will at least make sure the test is being done to their standards if not actually there 😣 Pain level last night from dressing change was off the charts. Not a happy bunny. I appreciate the contact ☺ Kath. Xx

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