So… The Wed night saw my new consultant step in and arrange a transfer by patient transport ambulance. He offered to get me up to his hospital and I basically bit his hand off, as it nicely got me away from everything I was no longer very chuffed with. He was talking even in preliminary discussions about more aggressive treatment (not hard…. ooo I’m feeling bitchy apparently!!) and investigation, which at the point I was/am at is much preferable to fannying around and sacrificing more toes etc. on that altar… The lovely ambulance crew got me strapped onto a stretcher and then wrapped me up into some kind of Kath-bug, very snugly indeed. I dozed quite a lot on the journey and then got wheeled right up to a bed in a little shared room quite late at night. I got started on quite a hefty dose of a different, stronger iv antibiotic, which continues three times a day at least throughout this post… A lovely member of the ward night team got me settled in and I conked out pretty easily, having been absolutely shattered for days on end by that point.
######Before I go any further, major viewing warning for further below; exposed flesh-of-Kath, bloody plex lines and infected digits!! You know you like it 😉 ########
Thursday I had a very busy morning, getting a femoral line put in… I already shared a pic of this on my Facebook page, but it is glorious enough to share again 😉 See below! I had some bloods taken out at that point and flasked for another cryoglobulin test… My Dr is still thinking it could possibly be cryo! It always fit in terms of symptoms and progression and a cryoglobulin test done earlier this month showed a weak postive – in that there was cryoprecipitates in the sample, but too little to identify what kind/test the sample properly. So there was a hefty blood sample taken out of the line just before it was capped… Result not yet in…
I then got wheeled down on my bed – through the WHOLE HOSPITAL 😀 – very dramatic!! – to the renal dialysis unit, where I got hooked up for day 1/5 of plasma exchange again – see resultant carnage above! I previously had this in December at Addenbrookes and the thought behind it is that my immune system is attacking something in my blood plasma (if it is cryo that I have, then it is attacking the cryoglobulins!) so plasma exchange not only gets rid of the antibodies attacking the bad guys but also stops my blood being all sludgey (which would be explained if it is cryo, by it being full of cryo blobs as they are big bastards when they fall out of solution (when I get colder)!). The lassies on the dialysis unit are lovely and got me settled in quite nicely; I was still so tired, I was completely out of it and asleep for most of of the time. Not sure how long… Maybe five hours? They removed about three litres of dodgy plasma! One cool thing I just learned (Monday night…) is that my tingly lip thing I get with the citra-lock they use to seal the lines between use is a known but quite unsual reaction – so that explains when they said I am “very symptomatic”!! I had told them as you are asked to mention anything weird and it was pretty bloody obvious – and has happened each time! – but didn’t realise it was so unusual!
Thursday eve I also got a visit from the parentals; they were doing a cross-over and meeting at the hospital, Dad coming up from down south and Mum down from Scotland – pretty good organising, but slightly dysfunctional 😀 😀 It was a bit of an emotional one. I had a chat with my new consultant whilst getting plasma exchange (hereafter plex!) and basically, the rituximab I had two infusions of in December isn’t an aggressive enough drug/hasn’t acted quickly enough really to be safe leaving by itself.
[Bit of a recap…] My disease (whatever it is) progessed too far without being checked before I started any treatment in the first place (my opinion, based on symptoms and time for recognition etc.) and then there was a serious load of faffing around when I was in hospital before Christmas. It is this bit that I am attempting to let go (both my own side of it and the part anyone else played), as they couldn’t give me the rituximab at that hospital – no funding for it, based on my diagnosis at that time. I COULD have said yes to cyclophosphamide at that time, but I was desperate to avoid it if possible, so I dug my heels in, made myself a pain in the arse and after weeks of sitting in agony watching my toe die, in a sobbing morphine mess, I got referred to Addenbroookes. Once there I got plasma exchange and they also sorted out rituximab for me, it being my preferred treatment and appropriate given the symptoms and my age/gender. So…. My toes kicking off twice so far this month is not necessarily to blame on the rituximab not working, but does mean that whatever benefit it is doing is not strong enough at the moment to be holding back the vasculitis/sludge blood.
######### Manky toe pics below!!! Scroll down fast to avoid 😉 ###########
The below is really pretty bad, both in terms of how fast it came on, it being a recurrent scenario and it being a horrible scepticemia risk as being immunocompromised on a few fronts, I basically have to go in asap and get iv antibiotics stat. This in itself can be quite hard to argue for, as I don’t present infection normally and was actually really quite bad before I realised as I don’t get a temperature, am used to them hurting a stupid amount anyway and was also just thinking my joints etc. hurt because the rituximab wasn’t working yet… Take note (if you can bear to look) at how the bit below the demarcation line is inflamed and infected now 😦 This is not good news and the vascular team came to see me and mri was sorted to look for osteomyelitis to see if it was choppy choppy time!
I’d say I am sorry for the above, but I’m not, I actually like making you all feel icked out 😉
So yep. Parents came and managed to converge and were here at the same time… With the ritux seen to be not working quickly enough, my Dr talked to my Drs at Addenbrookes and the consensus was that I really had to go for the cyclophosphamide now, or very seriously risk regretting not doing so. This got lined up for today (Monday) and I am at this moment watching the nasty toxic stuff dripping into me, hopefully making a beeline for my immune system to do what it is supposed to do and bypassing my ovaries and my hair etc. etc. and all the other things chemo kills.
I think its all well and good me preaching education of the masses – particularly with respect to the emotional impact of these kinds of treatments – but I need to be prepared to practice what I preach 😉 The ovaries are the main one thats getting to me and the reason for the parent visit being a bit emotional. They know only too well how long I fought to avoid cyclophosphamide in October and November – hell for the vast majority of six weeks! – and to now have no other options left is rather depressing to put it mildly. Before anyone pops up and suggests it, I can’t get eggs harvested as I am way too ill for the time that takes and having polycystic ovaries, the drugs required to get eggs ready to harvest would essentially put me at exciting risk of lots of cysts rupturing left, right and centre! If you google cyclophosphamide you will find it is not really first drug of choice for women my age for this reason. So I had a very quick cry with Mum and then we both told each other to get a grip, because as we decided previously, it isn’t very productive getting a cry on and then having to say bye – which we did, only about ten mins later, as one of the ward patients was having a serious anxiety attack at how many people were in the room and visitors were asked to adhere to the visiting times. So a good thing we didn’t get each other hyped into a drama 😉 I guess I will process it at some point! Just probably not whilst still in hospital.
Anyway. Something a bit different… 28th February is Rare Disease Day. This year to raise awareness, there is a photo challenge with the #rarediseaseday on instagram and twitter…
A handful of us are taking part (on an as and when/can basis!) on the Vasculitis UK Facebook support group and the results have been both amusing and quite poignant. Me being me (and currently in hospital once again) I have been looking for entertainment in the one hour out of every 24 that I am both awake and fully concious 😛 It has so far proven quite amusing reading everyone else’s little snippits and insights into their day, but there have also been some brutally honest posts, where I get the feeling a few people are sharing things with their friends/family via their own pages that they normally don’t feel they can.
Friday, I was still absolutely buggered and started to be a bit upset again about the cyclophosphamide. I talked myself down a bit by shelving it for now and will revisit it later when I can handle it. Same has I have done with the toe 😀 I already even have a joke – ovaries are ovarated 😀 Cammaaaan… Thats pretty funny 😉 I’m basically looking at it along the lines of all of these Docs wouldn’t be saying it is now time, if it wasn’t time. It happens to other people all the time; statistically there was always a chance of it being me and it would be rather big headed to think it wasn’t ever going to be me! Other exciting (?) thing on Friday was the mri of the foot… Death Toe and Fester were being little shits still so it was NOT fun AT ALL – normally I absolutely love a good mri, consider myself something of an expert 😉 But when I have infected toes, it hurts a LOT. All the vibrating and moving around… The whole point is keeping as still as possible and I kept getting involuntary nerve twitches that made keeping still pretty impossible. That has been going on the last few days, noticed it a lot in plex today as it was waking me up every time I dozed off! After the mri I basically conked out and didn’t really properly wake up at all until Sunday haha – Saturday I didn’t do much except sleep. I had more plex and had an exciting moment that the nurses called a “waffy moment” which amused me, as baby cousins always called me “waffren”… But my BP dropped to 88/44 at one point which is quite excitingly low for me! I am normally about 125/88 as a rough average… and that is with a lot of medication bringing that down – sludge blood remember 😉 I was fine afterwards anyway, they think it was because I had food and it pulled all the blood to my stomach haha 😀 Toe dressing also got changed. That was enough for me, I went to sleep and didn’t bother with much else 😀
Sunday I had plex early on – I wacked on the last Harry Potter audiobook and was asleep again in minutes, having been awake maybe for an hour, which included having a slice of toast 😀 I slept for at least half of the treatment and when I woke up, although I looked like the below (eurghhhhhh!!!) I was a lot more awake than then last week or so – remained awake for the rest of the day with only minimal crashes!! Toe wasn’t as sore either as it had settled post dressing change and meant I could have less oramorph, so wasn’t as wacked out. Dad visited as well which was fab 🙂
Note the stylish antibiotic bag necklace :O All the cool kids are wearing them…
Just had a little look on Patient Access to cancel the next few dressing appointments in advance… My discharge letter from admission through A&E is hilarious… In a sad, not really funny kind of way. It consists of about three lines. Maybe two sentences. Blah blah 28 year old woman blah “admitted with suspected cellulitis of her right foot…” Blah blah “We gave her IV antibiotics to cover for cellulitis, however her CRP is less than 5.” Yes, yes. CRP is the important thing to focus on.
Anyway… I think I just lost a bit of tomato or corned beef down my pj pants…
Today (Monday) was last day of plex. I started off with breaky nice and early to try avoid BP crash, but had another waffy moment anyway. No idea why! Managed to be a lot more awake again today. Line is staying in for a few days anyway, but once back up on the ward, had a big bag of saline through it and had the relatively innocuous, quick bag of cyclophosphamide. It comes with many pills and bits and bobs to protect your bladder and kidneys, stop you puking… So far no pukey! Woo! Mri scan was reviewed today and it is not very conclusive, but if there is osteomyelitis it is confined to the already dead bit of Death Toe. I will stay on antibiotics for who knows how long… Will be getting another biopsy to look further at possibilities such as CPAN and cryo (both really rather rare types of small vessel vasculitis) and anything else it could be… and may eventually have a bit more of a firm diagnosis one day. But! The exciting bit… Tomorrow, I am booked in for surgery and…
Death Toe is getting the chop 😀
This is the the last adventure of this particular Death Toe 😉 (I will keep writing, calm down, keep your panties on…) I am sorry to say I am sceptical of being able to say there will be no more adventures of Death Toe(s) but at least from this one, goodbye 😛 and from me (to DT), FUCK YOU, YOU PAINFUL NASTY LITTLE SHIT!!!