Today was a bit intense! Started doing a dressing change at midnight last night as I was maxed out on all of the prescribed painkillers and the dressing on Death Toe had become loose. This meant it was moving around and rubbing, and I was quite quickly losing my marbles with how sore it was getting. I had ended the day being told that as none of the consultants had added it to my chart (although everyone was aware it had been discussed and approved 😦 ) I couldn’t get the oromorph (liquid morphine) last night. Which was fine – I can understand why there needs to be this kind of protocol in place, so I accepted a double whammy of tramadol and sadly had it again reconfirmed that for me, tramadol may as well be tic tacs (specifically, the green ones that don’t really do it for anyone).
When I was changing the dressing, I realised none of the nurses on the ward at all had any idea what was under my sock. [Unintentionally so, but unfortunately that sounds a little bit filthy…] Partly in case any of them were curious (I am thoughtful like that) and partly to have them give their opinion on whether or not it looked at all infected, I went and roped in a spare pair of eyes. She took a quick look at the absolute necrotic mess that is Death Toe – whilst I was literally whimpering with pain trying to sort the new dressing out, and went straight away to get it signed off and fetched me some oromorph.
Instead of eventually passing out with exhaustion for 20 min spells from about 5am, I half-woke once or twice to have my blood pressure checked and had a top up dose of magic at about 3am – other than that, I slept for almost 7 hours!!!! That is the longest unbroken-by-pain-and-pacing-around stretch I have slept since at least June, maybe as far back as March 😀 😀 I was properly crying with happiness this morning; I honestly had been starting to believe I was immune to all pain relief and was doomed to be sleepless and in agony for ever. Which sounds dramatic, but try hardly sleeping for several months and you start to lose grip on reality a little 😉 Not that my grip was particularly excellent to begin with 😀
So that was a wonderful start to the day… Followed by various med student encounters again, which meant more of me awkwardly waffling without any particular guidance as to what they actually wanted to know. Bear in mind this was the day after MethDay and I had horrendous brain fog all day, so I was essentially ad-libbing a story of my life within about five minutes of starting, when all they probably asked was ‘what brought you onto the ward?’ 😀
I then had a proper toe exam by some Docs who I think were from the vascular department… Not entirely sure… I got some more oromorph so they could get within about a cm of Death Toe, with me only softly threatening excruciating deaths all round should they forget themselves and touch it. They were basically looking at the overall [lack of] blood flow to the foot – toes in particular and when they had finished, I had a rather frank chat with one of the nurses who confirmed what I thought was pretty bloody obvious, that the vast majority of the squishy underneath bit of the toe is dead and the rest of it is a complete mess. To the point where to save extended pain and infection risk, an at least partial amputation was a fairly desirable option. It may be a sign of how much I have grown to loathe Death Toe, but the thought of this being a genuine plan that would decisively end the months and months of ischemic pain didn’t upset me other than that this blog would need a new title 😀
To further addle my brain, I then later on had a detailed chat to firstly a rheumy nurse and then my rheumy Dr herself. The plan for the next few days was outlined, including two days of the hated iloprost as a short term emergency measure from tomorrow morning. From Friday afternoon, assuming all of the million blood tests come back ok, I should finally get my hands on that sweet sweet rituximab! Confusingly though, her opinion on amputation remains quite firmly that the blood flow is way too bad to consider it, as the newly created wound would basically not heal. Leaving it as is is a massive infection risk and would leave me in horrendous pain 24/7 so I assume a middle road option is most likely, where all of the dead bits are scraped away and I am left with a weirdly shaped half-toe that needs many months to heal up into its new, wonky shape. I will obviously quickly name wonky toe and give it a back story and love it just as much as the others, but the thought of months more worth of dressings and being lame to come is pretty bloody frustrating 😦
Regardless of what happens, I am in here for at least another four or so days and what happens after is I presume down to how the iloprost and the rituximab are handled, as well as what inventive toe saving/removing plans are put forwards… Good news? I am allowed liquid magic on request going forwards, so the plan is to sleep a bit more now 😀