No clues!

So the biopsy came back with no problems, apparently, which I thought was good! Then later in the afternoon I got a call that my creatinine has shot up again to 167! *sigh* I thought it might just be because the appointment was so late, or cos I hadn't drunk enough, but I went back for urgent bloods this morning and it's still 163 whereas my urea is absolutely fine. 

The doc I saw seemed to think it's "just a blip" and sent me home, so why are the nurses so concerned? And in the meantime there seems to be nothing that I can do to influence things other than keep taking the damn tablets. 

Biopsy

Well that was an odd day!

Got to the ward at 9, started the biopsy at 10. Mostly went smoothly apart from the bit where they thought they might have hit an artery (cue lots of rushing around and an extra quick ultrasound scan), but mercifully it wasn't. All done by 11am, then lying flat on your back for 4 hours under orders not to move, then another two hours propped up but still not allowed to move. 

Interestingly I'd always assumed they "buried" the kidney quite deep but it turns out it's only about 3cm or so under my skin! I now know exactly where to poke to feel it! Shame that the big lump in my side appears to be permanent though as that's actually the kidney itself!

Bit  sore n delicate afterwards but nothing compared to post surgery.  Phew!

Enforced rest

Biopsy is definitely on, 9am tomorrow morning, means I'll be in the ward all day, not allowed to get up, first two hours lying flat apparently. Best take a good book and some snacks with me, I guess!

Cret. dropped to 140 this morning, which is a bit better, but I'll be pleased to figure out if there's really an issue or if I'm just keeping myself too thirsty. I also appear to be a bit dairy intolerant these days - was feeling pretty foul last night after drinking two big bottles of milkshake during the day (part of the attempt to get my fluid intake up!) and then having cauliflower cheese for dinner. Might have to try cutting down on it. Aaargh. Milk n cheese are two of my favourite things! *crosses fingers it's not a big thing*

Change of plan

Got a call from the clinic on Friday evening saying that they'd been chatting about my results in some meeting or other and they've decided that rather than wait a week to see what my input/output is like they want to do a biopsy on Tuesday instead. :( This means I have to cancel my first foray out of London for six months; I was gonna pop off to Cardiff for a couple of days, get some sea air n stuff. But no! I'll most likely be lying flat on my back on a hospital bed not allowed to move instead. Brilliant. *sigh*

Oh well, at least it'll hopefully help identify why my cret. keeps going up. I'm still rather hoping that it might be just that I've not been drinking enough fluid, which I've hopefully been remedying the last few days. Finding it really hard to remember to measure input/output as I've been out and about - hard to know how much you're peeing when in a pub toilet! :)

Home's been hectic all weekend with people in fitting our new boiler, so no opportunity to do any exercise really (they don't need to see me sweating to an aerobics dvd). Hoping to remedy that this week. Got to get them knock my steroids down if I can and if things are ok too!

Still going up

:( Creatinine is 146 now. Not a huge increase test on test, but that's a steady upward trend over the last few weeks. Ultrasound didn't seem to show anything untoward earlier but the clinic haven't seen the result yet. Biopsy due in three or four weeks' time. Starting to get rather worried. Please please please please don't let this fuck up.

New drugs

Despite having been originally told that they wouldn't change my drug regimen for three months so things could stabilise, the issue of side effects (mainly the ridiculous excess hair growth) has led them to decide to move me off the Cyclosporin - the really big horse-sized tablets in the pictures back in December - on to a different drug called Tacrolimus, starting today. Apparently this should end that particular side effect immediately, but of course there are a whole raft of new ones to play with, including hair loss, just for variety, and the potential to become diabetic, which happens to as many as one in 5 people taking this drug. Brilliant! *lol* Oh well, worth having a go anyway. I honestly think I'd rather be watching my sugar intake than having to shave daily. 

There's still some concern about my creatinine being stuck at the 135-140 mark when it was down at 108 a few weeks ago, but now that I'm changing drugs all bets are off for a bit. I've also got an ultrasound on Monday, and they apparently schedule a biopsy for three months anyway to see how things are going internally in the kidney (a 3D view as opposed to the 2D view of an ultrasound is how they put it), so that's all coming up in the next few weeks. For the time being, still going back twice a week.

In other news, had a fantastic pampering day with a lovely friend this week, am starting Tai Chi classes nextThursday and am going to escape to Cardiff for 48 hours the week after that.... and then think about going back to work. Yikes!

Fretting

So the nurses called me back in first thing this morning cos my cret was creeping back up, was at 140 again. Hung around for two hours for the result, it came back at 137, better but still up from the 133 it has been stuck at for two weeks, it seems to be on a very slow but steady upward curve from the best of 108 I had in early January. :(

I don't get it - the doc I saw last week seemed quite optimistic that I could go down to one visit a week if my chest and mouth ulcer cleared up (which they seem to be doing), then this week I have to have three, with the possibility of an ultrasound and goodness knows what else if it's still bad.

Gonna keep a fluid diary for the next 48 hours to make sure I'm drinking enough. 

...

Very very sad this morning. Fed up with drug side effects, particularly the acne (which I've never had before in my life), weight gain and the excess hair in odd places - it's kinda like going through puberty or something! Feeling rather hopeless and aimless; not able to see any obvious improvement or end in sight to this slog of poor quality existence. Really don't feel like myself at all. 

Hopefully doing some stuff to improve my mood over the next couple of weeks, including starting some tai chi and pilates classes, and treating myself to a Spa day this Wednesday with a friend for some good old fashioned girlie pampering. Also bought myself an exercise DVD *lol* with the intention of getting sweaty at home in front of the TV rather than embarrassing myself by being completely pathetic at a gym. Managed 20 mins on Thursday which is better than I expected. Will have another go tomorrow.

Snow days

Didn't manage to get to clinic on Monday cos of the snow. I completely fail to understand how a bit of snow can shut down the entire bus and tube AND train network. I only live two miles from the City of London, for goodness' sake! Still, did go and try sledging for the first time in my life and actually made a snowman, which was loads of fun!

Down to twice weekly visits now, which is great - Monday and Thursday. Still got some issues to work out, as my cret. isn't as low as I'd like; hovering around 135-140 (eGFR 40) when at its best it was down to 108 (eGFR 50). Doc said if the other little bits we're dealing with settle next week I could be down to one visit a week pretty soon - fantastic! Noticed while they were calling up my blood tests that when they request them and the labels get printed, each one has a price on. That felt kinda weird; also reminded me how very grateful I am that we have the National Health Service!

In the meantime, I have STILL got this mouth ulcer from the intubation during the transplant that will not heal, although new steroids seem to be helping and I'm seeing the dentist again on Monday who will hopefully confirm that it's going away now and doesn't need a biopsy or anything. Also had a chest x-ray yesterday and got yet more antibiotics to try and shift this chesty cough/cold thing that's hanging around. Still so very tired. Hoping that it'll all go soon as I really want to be able to get on and do some exercise, I'm getting proper lardy and restless now.

Of course in comparison to how I felt three months ago this is all just minor niggles! But I just want to get on and feel better now, damnit! Got a lot of work to do yet to get my confidence back as well, physically and mentally - I just don't seem to be sure of anything, sometimes it's like walking round blindfolded. 

Have tentatively set a return to work date for four weeks from now. Hospital reckons three months is a good target for getting back into the swing of my life. Can't believe how quickly the last 8 weeks have passed, while at the same time it feels like forever. Getting back into a routine will certainly be welcome but I fear I've forgotten everything I ever knew about my job! Hopefully I can ease back in gently.