Day 17: Toemorrow… Toe be or not Toe be – that is the question?! Guest starring Cystitis :D (No, not like that…)

As a blog title, it was one of the first Dad came up with (there you go Dad, credited… Well done, very funny…) and – its maybe a bit anticipatory, but… well, read on 😉

My morning started as usual at about 5.30 am with obs to check I was alive – was already running a small temp by that point and to a certain extent this has gone on all day :/

So Bay Life breakfast kicks off about 6.30 am and the curtains all get whipped back and the lights all get wanged on – heaven help you if you lost any pjs in the night! Meds come round at 8.30 am – I was chatting to the nurse doing them and mentioned that I was hoping for a LOT of blood tests back and that also expecting a dressing change for Death Toe… and I was told that the tissue viability nurse had ‘left instructions’ on how to dress a necrotic toe he hasn’t seen for nine days and NO ONE has seen for three… Bear in mind this is a toe that over the space of the last three dressing changes in about a week went to 50% necrotic from being skinned down to the pink and raw, with two smallish patches of necrosis… I was absolutely speechless. Jaw on floor. Can you instruct anything on that basis???

I didn’t really go into it with her as I was processing… I finished my jam/butter roll combo and went and found the ward Sister in charge – she is a particular fave of mine so I was glad she was on 🙂 Explained why I was worried as calmly and rationally as I could, advised the little brat was already overdue its 48 hour dressing change (was supposed to be yesterday) and that I had heard nothing about infection since finishing iv antiobiotics on Monday as well and that I wasn’t looking forward to whatever surprise had been cooked up for me.

In typical Kath style I am now becoming increasingly paranoid that all of the staff have labelled me paranoid (and/or hysterical) haha – a lot of this has been more frustrating from the meth-fog lifting a little since having a full week off and KNOWING how much clearer my brain is now, but also knowing I had had two weeks by that point of being incapable of articulating anything verbally.

Anyway, the Sister was ace and agreed straight away that was not ideal and arranged that someone from rheumy team and tissue viability nurse would have a pow wow and get to me this afternoon BEFORE a dressing change.

Was quite proud for not crying with that wobbly start to the day and then a little after breakfast I read a horrible story about a dementia care home and started howling :/ It felt like only a matter of time today 😉

I didn’t see my Dr but had a lovely long chat with one of her minions (a very lovely, highly intelligent lass, but calling them all minions is too good) so I actually have a bit more news for everyone! All of the blood tests yesterday except two came back today – and they are all fine – ie clincally as interesting as cabbage! So my kidneys are still ok (the one I keep flapping about) and I am not showing any obvious indicators of another autoimmune/rheumatological issue such as lupus etc. as well as whatever small vessel vasculitis process is going on. With regards to kidneys – and aforementioned paranoia, I made a point of advising that I was struggling to balance my knowledge that Cryo in particular goes for kidneys and that dipsticks are earlier indicators than blood tests, with the fact that no one had so far told me what was reasonable in terms of dipstick frequency. I think the example actually made my stance on wanting to know as much as possible a bit easier for her to appreciate – I would hope so anyway! We discussed it down to a possibly Thursday (time before weekend when everyone vanishes)/Monday twice weekly pattern until something changes in any way. She also told me what to look out for in terms of what I would notice at the point of peeing, as Cryo kidney damage APPARENTLY doesn’t initially present with pain :/

My doctors really still think I have cryoglobulinaemic vasculitis – they are waiting on that ‘double check’ blood test coming back as soon as possible and if that comes back as postitive they can start treating it. The Dr I spoke to today was saying that even if it came back negative, she reckoned the team would insist on it being redone anyway, after I confirmed no flask was used to keep it at 37 degrees. A flask was requested by rheumy Dr without a doubt, who was also saying on Monday that the protocol for cryo testing is being tightened – but this clearly hasn’t filtered down far enough, as the phlebotomists were sniggering about the flask yesterday morning. I had held my peace – again not really standing up for myself, but was hovering on the edge of going icy cold rage mid-blood tests and pointing out that the difference between a careless test was a diagnosis and chemo… Which makes me feel like an idiot to be honest for not speaking up now 😦 I suppose if it can be redone if I ask then fair enough. No one is coming near me with cyclo unless there are no other options.

As discussed, the other possible option is something called anti-phospholipid syndrome… the other test that I didn’t get back today is the fancy one that went to Sheffield (beta 2 glycoprotein 1!). The Sheffield one may be enough to confirm anti-phospholipid syndrome in itself, but the other test that was sent for this (lupus anti-coagulant) came back negative today! If we don’t get a clear hit on these, then the diagnosis will be left at ‘undifferentiated small vessel vasculitis’ for now. I was ‘undifferentiated connective tissue disease’ for almost a year, so this is progress anyway!!!

Another fun option that someone just pointed out is that I could very easily have both 😀 hahaha – treatment is the same as far as I can tell 😉

The other nice blood test news is that it looks like the infection is cleared already from my bloodstream!! – but we are still going to have to do constant checks to make sure it isn’t hiding in the dead toe tissue. As mentioned, I am feeling a bit spikey with the temp today and the swab taken on Sunday has not shown its face… I asked if necrotic tissue swabs would grow good cultures and told not so fabby!
… So yep, constant blood tests to check infection indicators in the meantime. More iloprost also likely tomorrow – or “if I can find some in the fridge” 😄, which will keep the infection highway between Kath and Death Toe open!
Tissue viability nurse WAS the original plan after this morning’s grump, but then when discussing with rheumy lass (and as verified by TVN when he popped his head around the curtain mid-convo), he would more deal with the wound if it was raw and needed dressings etc. The necrotic tissue needs removing, so no dressing change was done today and Death Toe is getting looked at by the vascular surgical team TOEMORROW (still funny) as this is now more their territory. They will put a plan together for debrading away the necrotic chunks – or decide we need to just lollop all him off… They may just crack on and start removing bits tomorrow in theatre under local anaesthetic if they have a space. It feels weird. I have been begging for a full toe chop for months and it may be tomorrow depending on what is under this dressing…
I suppose its a beginning if they can at least start slicing off chunks tomorrow – I guess they have no idea what is going on in there. Also how much worse it has become in the last… four days by tomorrow!! – and also if infection is festering in there still etc etc… The most ick yet awesome part of that conversation was trying to handle the image of chunks of Death Toe being used to grow a culture to see if the infection has remained in the necrotic tissue 😀 DEATH TOE BABIES!! If we count infection cultures as babies…

Lidocaine was started tonight as planned with the pain nurse – the patch is almost the size of my foot, and not entirely sure it is doing anything yet, but it is a 12 hour slow release job – running it ten to ten – COWBOY TIME 😀 Was sort of expecting to not feel my foot by now!!

Oooooooooooooo teeth grind……….. (A little while ago at the time of finishing this now) but I asked a lass to see if it was time for obs yet as I was wanting a quick temp check, as its spiked about 20 mins ago and I got told by someone – can’t remember who! – that just a little after it spikes up is best time to check it. Given above current situation, I am being infection paranoid right now. So the nurse came round to check obs pretty soon after and was clearly going to be doing everyone else anyway. I am saying that I am clammy and feel roasting – and my face is OBVIOUSLY showing this… She starts off with, yes well its the weather at the moment. To which I said that I am just worrying, because I have just stopped antibiotics and don’t have all infection checks back and have been spiking (at least for ME) all day… So its 36.7, to which I said great, not a problem, wanted to check, its done that before and I’ve been super warm and clammy and it hasn’t shown up (subtext being, when I was actually definitely infected over the last ten day…). “Yes, well its not a problem until its 38.” NOT TRYING TO TELL YOU YOUR JOB SWEETIE, BUT YOU DON’T TRY AND TELL ME WHEN I FEEL FEVERISH…

Then I am looking at P over her shoulder, who still hasn’t left to go to a care home and is now due to leave us tomorrow… and she has no thickened drink on her table and was moving her big bottle of water around and looking at me… So I mentioned it as she is filling in my obs and said I thought P maybe wants a thickened drink… “Well! Do you mind if I finish doing this first?! I have to do everyones obs and then I have to go sort out YOUR zomorph and YOUR lidocaine patch… P will just have to wait, one of the girls can get to her.” – I pointed out that I am just aware that P cannot say for herself and had to leave it there as my jaw was clenched and am now pretty bloody riled up. I don’t know how common it is for people to have different temperature ranges as well, but I generally run at about the 36.4 mark from what I can see, and 37.6 earlier today was HIGH for me, hence the concern based on earlier readings today, but I was feeling exactly the same as I had done then and as I had done the entire time I was infected last week.

Had to go brush my teeth and bawl my eyes out at the same time – in many ways a cyclical process as I get very annoyed at how much of a mess I look when I cry hehe 😀

Would like to finish on a cheerful note; one of my absolute faves came in tonight on a planned visit to bring back clean washing and post – and brought another fave with her as a surprise!! I got an hour of cuddles and venting and being told I am awesome haha – AND! Post wise, I got the BEAUTIFUL yarn in the pic, so now have a small project being planned whilst in here. It is absolutely stunning and 100% merino so soft as anything 🙂

Got some awesome pressies as well, including books of quirky minature art scenes that are DEF going to be plagerised to hell on here! – and a tub of brownie squares that smelled good enough to make me want some, despite hospital hunger vanishing problem! Best pressie however, was the already named Cystitis, as featured above. She is called something so classy to tie in with my nickname being ‘Phyllis’ – a quirky adaptation of Syphilis, as discussed in a previous post. Super soft…

I was in the fabulous position of being able to limp them to the way out sign, say my goodbyes in dramatic kiss-blowing fashion as they disappeared down the endless corridor, and then finally, just still within ear shot, say nice and loudly “Thank you so much for giving me Cystitis!” It felt good 😀

EDIT: I just replied with the below to a comment on facebook. In the interests of not putting a false front on this, decided to share on here too. If you are overcome with sympathy, consider people dealing with entire limbs as opposed to a stupid non-balance essential toe 😕

– I’ll be honest – I’m still up bawling my eyes out. Lidocaine doing jack so far – bailed 15 mins ago and had some oramorph. Not sure how long they take to kick in? Also very aware that I’m scared of all the other stuff, but have casually joked about amputations since the first ulcer about 20 months ago. Now no idea what I’ll see tomorrow – its been too many days and it had changed SO fast last time – and no idea what they’ll do. Part of me really wants one proper full amputation under general as I have had debrading/slicing chunks etc before and it a) hurts like hell and b) tends to need several repeat attacks… 😣 Crappy crappy evening!



2 thoughts on “Day 17: Toemorrow… Toe be or not Toe be – that is the question?! Guest starring Cystitis :D (No, not like that…)

  1. Hi Kath, feeling so much for you as I read all what’s happening to you! Do hope there’s better news “Toemorrow” very impressed!!! Sending you a big hug!!! Lots of love Peggy!!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s