So to start off on a fairly random note, the above is a recommended portion of smarties – who in their entire life has ever counted out a portion of smarties?? It did however hit home the appetite decrease, as I was having a cuddle post-snot fest yesterday lunch time and managed TWO. Two smarties. Then had to force myself to eat lunch when they brought it back; a perfectly harmless ham and tomato sandwich. Pain, drugs and being stressed and knackered are playing hell with my appetite! I always thought I was a comfort eater but apparently not
Part 1 – I have wanged some pictures further down, which will probably make most normal people feel ill, so please read on at your own risk!!
Yesterday (Monday and day 8 inside) was in a word traumatic. I had been in a stupid amount of pain from Sunday afternoon, to the point where the oramorph wasn’t even working and I was in a proper stew about talking to my rheumy Dr about a referral to Addenbrookes. Just the fact I was in so much pain and no one was around the entire weekend with any answers was distressing and annoying as well.
Started off with being hooked up to the last batch of iloprost and was flying through it…. Then I had what I have been considering Dr chat Part 1, with my rheumy Dr and her two fifth year med students (both really lovely!). Part 1 had me crying within… five minutes. I started off describing Thursday night and the exploding toe incident and was told that yes, Death Toe was in fact infected. This had me bawling immediately as I had basically associated infection with no rituximab, which is true to a certain extent as she doesn’t want to crack on with it immediately, but with the delay in rituximab working anyway was a bit of a pointless thing to be a drama queen about. I have been prescribed seven days strong iv antibiotics and knowing me will likely need many weeks more… Below is how you use a bin bag to protect a cannula…
The main problem with Part 1 was that I was knackered, had just finished six hours of iloprost, five of which at level five, and was already terrified of the conversation three days before hand, despite the lovely people at Vasculitis UK giving me support and encouraging me to stop feeling guilty for advocating for myself. I am basically the one who is going to care about myself the most, have the most time and invested interest in learning about my condition and have the most intimate access to the patient 😀 No filth intended.
I am sure she had already been told about my wish to involve Addenbrookes as I mentioned it to a few staff over the weekend, but I managed to bring it up – by that point already snotting all over the place. Should also mention I had only recently had a top of oramorph that wasn’t working at that point and was in excruciating pain still from Death Toe (setting the scene like a pro haha). My request was basically that a particular Dr at that clinic had indirectly offered his assistance and that, knowing that he is a reknown Vasculitis specialist, I would be stupid to not accept that and get referred for his advice at the very least. Now the problem is I can’t refer myself, but I have the right to request a referral. This is a problem as I am a complete wet lettuce and didn’t want to hurt MY Dr’s feelings by insinuating that I didn’t trust her haha – this became painfully clear when I am essentially off my face on pain and morphine and kept trying to re-word what could really have been a simple demand >.<
The upshot of all of this is that the specialist was emailed and a message left and I have been updated today to confirm no reply yet, but he had clinic time today so should by now have picked up the messages. This is pretty ace as I know he is in favour of instant plasmapherisis, which I would like sooner rather than later, given that I am already off work sick and it takes quite a few days in hospital and that if the rituximab takes a few weeks to kick in at least, I will essentially be unprotected from the vasculitis doing whatever the hell it wants. This has become more concerning with Death Toe becoming a revolting infected git, as for example that means already missing this weeks meth – fair enough the meth isn’t doing a lot but its better than nothing!
I also had a lot of tests I was worrying about. My cryo type hasn’t been done yet as the last sample was lipemic – e.g had weirdly high levels of fat molecules in. This is a bit of a bugger – another sample was sent of asap to get cryo levels and typed, but my immunology results (things that indicate rheumatoid arthritis, or lupus for example) have consistently been coming back negative, up to the latest ones. This means, if I do have cryo, it is either caused by a weird virus I had in the past which no one would be able to pin down, or I have essential mixed cryo, which is something like 1% of cases. 1% of an already very rare type of a rare group of conditions is…. a small number. I don’t like being rare; hardly anyone knows anything about it or how to treat it!!
Anyway. Other things discussed, still ankle deep in snot and hysterics, included the need for a nerve conduction study as I have been increasingly getting numbness and pins and needles in fingers and toes, correlating with the level of damage showing in each digit. Death Toe’s new fave thing has also been to shoot nerve pain up my shin and make my foot hyper sensitive. I was sorted out for a pain nurse visit (still to happen) and also discussed the ultrasound which essentially just proved small vessel vasculitis is quite severly affecting all four of my limbs. In the meantime, I am now on twice daily slow release morphine, with oramorph for breakthrough pain – will be handy for dressing changes etc. The new pills are absolutely gorgeous 😀
I was given a bit of a chance to calm down and eat aforementioned sandwich and my wonderful inside-friend came and cuddled me for a bit. I know she just wanted the smarties, but we pretended otherwise so as not to ruin the moment 😉
Part 2 – Disgusting pictures below!!!
I will keep this section short and sweet as the memory is making me want to vomit. I had a dressing change on Sunday, which involved a hydrocolloid dressing being put on Death Toe to loosen off the necrotic tissue. This seemed to make sense at the time and no consultants were present to voice concerns.
My Dr didn’t remove the dressing herself, partly as it was obvious I was in a shed load of pain. Instead she magic’d up a tissue viability man, who waited patiently whilst I scarfed down some more oramorph, politely advised him that I wasn’t having a good day and that if he touched my toe without prior consent I would not be responsible for my actions.
It was agreed that I remove the dressing; which I did. Quite slowly and carefully. It hurt a LOT. So I was basically whimpering and biting my hand and swearing a lot, but also trying to use expressions like ‘shine a light’ as it was visiting time and there were members of the general public amongst us. The pictures basically speak for themselves, but Death Toe is infected and I am apparently quite sensitive to hydrocolloid dressings, which was apparently not a wise type of dressing to use… If you can imagine a rabbit being skinned old-fashioned style in a oner, that is basically what happened and is why Death Toe was so shitting painful Sunday night and Monday!!! I am sorry. These are truly vile… The underneath part is essentially a deep necrotic pit of doom…
Yes, my toenail has also vanished completely. After all of this, Death Toe was re-dressed with a dry basic dressing and now needs to be re-done every 48 hours (woopee…) and it is still a little unknown how much will survive. On a cheerful note, the mri did show the infection isn’t in my bone at the moment!! Osteomyelitis? Yep that one. None of that!
I then basically went into exceptionally drugged floop mode – with the bad dressing off and the new one on, even having been freshly skinned, Death Toe was actually less painful almost immediately. But I was exhausted. So much to the amusement of everyone but the senior nurse on Monday night, I went to the toilet… and fell asleep for what was apparently nearly two hours 😀 ie sitting on the loo, pants round ankles etc, woke up with head leaning on loo roll holder on the wall. I assumed I had done a head nod for a few mins at most and having had no idea of time I went – or time I woke up and left, was unaware I was in trouble until one of the staff grabbed the senior nurse and sicced her on me!!
She had been looking for me for ages to set up the iv antibiotics and had already told security to keep an eye out for me and was amazed at how I magically got back into the ward without having left – when the whole time I was about 10m from my bed, unconcious on the toilet hahaha 😀 You don’t know tired until you can pass out on a shared ward toilet 😀 Hopefully that amuses you all. I was still wiped out and felt hideously guilty, but she forgave me and got her own back immediately by taking a few attempts to cannulate me 😀
This is being typed up on the Tuesday, as I have spent the whole day reeeeeally wanting to function as a human but failing utterly – last night I did the essential updates to family and a friend to cascade round regarding the consultant convo and infection etc., and gave myself permission to not blog at all earlier today, as I knew I needed to sleep lots. As proven by the TOElet nap (all credit to Dad, he is so funny, should have been in advertising, etc.).