This time last year

... i was barely able to get out of bed *lol*

On Thursday I'll be driving to the inlaws for Christmas festivities. Sad to be leaving the cat (aw) but glad to be up and at 'em. Shame I've bought no presents yet!!

Longest gap ever!

Went to clinic yesterday for the first time in a month! Was listening to people while waiting who are much further back in the game than I am, was weird to hear. Also got fed up with some oldish guy who was just constantly moaning that everything takes too long. Well, yeah, it does, but whinging and sucking your teeth at people isn't going to make it go faster and just makes the experience more stressful and miserable for everyone else *sigh*. Wanted to tell him to STFU but decided against it.

They've also put in big flat scren tellys for people to stare at while they're waiting, with the sound turned down to a whisper and subtitles on instead. At least it was showing BBC News rather than Sky!

I was quite glad to be there, actually. Good to catch up with the docs and nurses and wished everyone a very happy Christmas as I won't be back there now until Jan 6th.

That's FIVE WHOLE WEEKS!!!

I don't think I've gone that long without a visit to a hospital in, oooh, three and a half years?!? Certainly since I destroyed my knee after that fateful Cat Empire gig in Shepherds Bush. Feels very good indeed.

Off to California next weekend for work. On reflection, probably should have told the hospital that but I'm sure it'll be fine. Just need to remember to take enough drugs with me!

Bureaucracy at its best

So I went to my local GP to get the 'flu shot this morning. While I was there, someone handed my a urine sample kit. "What's this for?" I said. "You've got kidney disease, so the doctor needs to get a sample from you", the lady replied. When I questioned, saying I attend Guys' for such tests every couple of weeks, she
advised I could ask the Nurse more details while getting my vaccination.

So I did.

She said, "they need to offer tests like this to people to get their money". Essentially, the GP surgery has to collect and measure samples from at risk type patients, 90% of them, or they get some of their funding docked.

So I have to pee in a pot, and take it round to my GP one morning later this week so he can send it to King's for a completely unnecessary dip test so that he can tick a target box, when I'm already being monitored more closely than just about every other person on their books.

How ridiculous.

Oh and - we've got a cat!!

She's gorgeous! Shy as hell so far but we've only had her four days.

Her name is Dimple. Only about a year old according to the people at Battesea, the home where we picked her up.

Favourite occupation at the moment seems to be hiding, either under the arm chair or in the clean linen drawer under the bed. More interested in plastic bags than the toys we've got her. We're being very good at not spoiling her so far but I've no clue how long we'll last.

Have waited nearly 8 years for us to be able to get a cat. So chuffed!

Just a quickie

Dirty weekend away in Mallorca - fabulous. Stayed in Soller, north west in the Tramantuna valley. Lovely and tiny hotel - Ca's Curial. Specialises in "Agroturismo" apparently.

Hot, sunny, very long and hilly cycle rides (30km+) and I didn't die or anything. G went for a longer one alone the next day and very nearly conked out, heh.

Amazing FRESH orange juice from the grove we were staying in. OJ isn't acidic when it's freshly squeezed like that. Who knew?

Gorgeous little tabby kitten followed us around while we were there. Awwww. *melt*

Forgot to get travel insurance until already there, living on the edge, me. Would have cost over a ton to insure me for the kidney so chose to exclude, cost me a tenner.

Got back, had yet more blood tests. Halving the Myfortic seems to have worked; white cells back up to well within normal range, best creatinine results in six months, eGFR up to 44! Fantastic. Going back in three weeks. With luck I should be on monthly obs by Christmas.

Yay!

Ooooh

If I carry on doing enough exercise and shift a few more pounds, I can stop taking my blood pressure medication completely! That'll be the first time in, oooh, ten years I've not been on beta blockers :)

On the flipside, my white cell count has tanked so we've had to halve my Myfortic (immunosuppressant) dose to try and stop it dropping further and go back up again, otherwise I'll be super-prone to infections. Hopefully will help, I had another blood test this morning. So I'm back to weekly obs again, boooo. Temporary blip though hopefully, mostly I feel pretty great!

G's on my back to go running more and get fitter. I know he's right, too, I'm just lazy :) Still, cycling 12 miles a day can't be that lazy, can it?! I just hate running, but it really does work. Have been inspired not to bitch about it too much by Eddie Izzard's 1000 mile run round the UK.

Also have booked an afternoon of fun for me n Johanna on our one year anniversary in December. :)

Wow, check this story out

What a screwed up system they have in the US. I can't imagine how anyone is gonna be able to fix it. Even if Obama's reforms get through, situations like this are bound to continue. Glad I'm in the UK and have the good old NHS behind me.

On the flip side, in the comments someone says "this story is about the fact that govt bureaucrats are so ineffectual that it'll take an act of Congress to change this ruling; this is why we fear Obama's reforms". I hadn't thought about it like that. If he was proposing an NHS (which would *never* fly in the US as an idea) that'd be one thing, but from what I understand, all he can really do is propose a Govt-funded insurance scheme for those who are too poor or jobless to find their own private one... and as the private system sometimes also totally fails to support transplant drugs, it really does seem like after 3 years you're living on borrowed time if you have ESRF there... but they'll fund dialysis permanently?! How screwed up is that!

Feeling unreasonable. What to do about it??

I watched a telly feature about cancer earlier; it talked about how cancer patients are entitled to free prescriptions now, and a segment on the huge advances being made and money being invested and patient support services to help them continue to enjoy life and so on and so on....

It suddenly struck me - why don't ALL long term illness sufferers have anything like the same level of focus or support? Even just the prescription thing - I was taking sixteen different daily meds after the transplant, and I'm still on seven different ones each day now. Why do people in our position still pay while cancer patients don't? Diaylsis patients are often just as unwell as a cancer patient on chemo, and yet the level of support is strikingly different and often sadly lacking. Why? Less visible, I spose. Are the charities not very good? Is it too granular, i.e. focussed in individual hospitals rather than national campaigns?

I suppose it's mostly down to the fact that "cancer" is seen as one single threat and therefore one which affects 1 in 3 people, when it's so many different diseases under the one umbrella. This means everyone feels touched by it and therefore it gets attention and is well supported as a charitable cause. (Quite right too, by the way - I don't mean to denigrate the effect cancer has on anyone, I've seen its devastating nature myself, I'm just commenting on the disparity with other life-threatening conditions) By comparison, ESRF patients in particular get very little support in some places. I'm very fortunate to be where I am, there's all sorts of options open to me and I have a strong support network around me.

The perception is all wrong - people see dialysis as a fix of sorts, and transplant is certainly seen as a cure rather than just another form of treatment. I do feel a thousand times better now than I did a year ago, but still I get paranoid every time I get a pain in my side, or a cough, or a temperature, that I'm going to lose it again. And those pills n potions really are for life. Occasionally I get so acutely aware of how fragile this situation feels and I really have to stop and catch my breath and remember that it really is going to be alright, for a number of years at least.

So, what to do about it. The most obvious thing I'm doing I suppose is making sure I tell people I meet what has happened and encourage my mates to do the same - both in terms of the treatment but mostly in terms of the donation and how fantastic it has been for me. I want to publicise it more in other ways too, and though I hate the cliché of "raising awareness" that's really what needs to happen, I suppose.

I still have designs on jumping off Guy's Tower (on a rope!) next year for the KPA charity. Hope that can happen.

Three whole weeks

So apparently after my litte shouty session last time they've now decided that as my creatinine is stable at around 140ish that it's my baseline and I should consider myself stable and don't need another biopsy etc, which is nice. I went back on Friday for more tests and now I don't have to go back til after Edinburgh, which is three whole weeks away!! Think that'll be the longest time I've not been to Guy's in well over a year! :)

Just wish the idiotic doctors surgery would stop screwing up my prescriptions. *sigh* I've run out of one of the anti-rejection drugs so I had to do half doses yesterday. Hopefully it'll turn up today!

Exercise is going well, cycled to work yesterday, probably undid the positives by having cake and peanuts as well, hehehe. Felt good though and I didn't have to give Southern Trains any more of my hard earned cash, which is always a bonus. Down to approx 74kg which is good but another 4kg to go before I'm satisfied. If I can do it before the 1 year anniversary of the transplant that'd be good.

Keep taking the tablets :)

Have been a bit forgetful lately. Managed to not take any steroids for most of last week, doh. Didn't seem to affect me negatively though... did have to do a mercy dash to a Boots store on the South Coast to get an emergency supply when I realised at the weekend though!

Then this morning got all the way to the office before I remembered I was meant to be at clinic *doh* - hightailed it back over there and was only 15 minutes late. Of course I ended up hanging around for 2 and a half hours *sigh*.

Doctor was very simple and business-like. Said something about everything seeming ok and would I like to come back in a month? I was somewhat perturbed. "What about all the tests I had two weeks ago? What happened with the PET-CT (where I had to take a half day off work and be radioactive)"? She hadn't even clocked that I had one. Gah. The report said there was nothing to see though....

I had a bit of a freakout about the fact that the positioning of the doctors is so inconsistent... she seemed to think all was well, but if it was why bother with all the additional tests?! Is my creatinine ok or not?! (still about 150ish) Will having it at 150 rather than 100 affect the longevity of the kidney? Am I going to get 5, 10, 15 years out of it? Can we do anything to improve the situation? Or is it in fact fine and I should stop fretting?

Ended up talking for 20 minutes.

She's a nice lady, she just got the rough end of my temper. Oops.

Anyway. Upshot is she's going to mention it all in the group meeting tomorrow and I'm going back in two weeks. She also agreed that I could come in and have bloods taken BEFORE my appointment (hurrah) so it's a more useful exercise rather than always working off old data.

I also got told that they're discussing setting it up so you always see the same consultant when you visit. She's personally against it, cos she thinks collaboratively they spot more things. On the other hand, meeting the same doctor is reassuring for many and you get a better sense of a relationship, which will certainly appeal to older people. I'm not sure... I'd just like to not be seen by the ones I don't like much ;)

Going back tomorrow for Peer Support group training. Should be interesting.

Stoopid physical infirmities

So I made it in and out of Glastonbury in one piece. Hurrah!

This ---> is us on the last day, I think. We're still pretty with it considering it's the 6th day of camping in what was mostly very hot weather. Had a great time, except I got utterly pissed off with things at nighttime - unless you're protected by some kind of chemical blanket, it's cold, dull and hard work after about midnight. But the daytimes made up for it. Much hilarity ensued and I enjoyed lots of things, too many to list. The view from the top of the festie above the stone circle still makes it all worthwhile, I could sit there all day.

So that was all lovely and despite some hard times I was dead glad I went. Has taken days to get over it, but that's not surprising; everyone else is equally as jetlagged as me.

Had lots planned for this weekend, if only gentle mate-catching-up type stuff, but it all got ruined by my blood pressure suddenly plummeting on Saturday morning for some reason. I fainted and bashed my head, bleeding all over the place. Doh! I checked my BP afterwards to find it was 95/55, which certainly seems like a good reason for the fainting. Spent the afternoon at hospital getting my head glued back together. Luckily the lovely G was here and came and sat with me and stopped me ranting at people who clearly seemed to be queue jumping at the hospital. Love you babe.

Kinda spoilt my Sunday plans of shopping at Bluewater too, shame really. Gonna call the clinic re: blood pressure tomorrow and figure out what to do. I'd like to cycle to work but I can barely stand up without falling over so don't reckon that's much of a goer. Will try to go to the office though if I can, need to get out of the house apart from anything else!!

Had an Ultrasound on Friday, which seemed fairly pointless, and have a PET CT this Friday. Not sure what to expect. Radioactive dye, apparently. Hopefully I'll glow in the dark afterwards or something. Reckon the surgeon I saw that week was all a bit test happy as he seemed to be signing me up for all sorts. My native kidneys are hurting a bit and the new one twinges too from time to time but I don't know if that could be psycho-somatic or something.

Feels horribly like every time I try to make an effort to get "back to normal" something comes along and twats me in the face to remind me that I'm still ill and should STFU and stop trying to get on with life. Fucked off with it now.

Woo! Woo! Glasto!

I'm off to Glastonbury tomorrow!

Thought I was getting ill the other day but it turns out I've just not got so excited about something for so long that I'd forgotten how those butterflies in the tummy feel. AND it's not gonna be a mudbath. Bloody brilliant!

I did the Blazing Saddles tent rig last week (thanks Pete) plus 300 miles of driving and coped fine despite still being on antibiotics, so I must be doing ok.
Obviously on my best behaviour while there, including lots of water, less cider (well, a bit less) and regular dousing of hands in antibac stuff. At least as I'm camping backstage this year I'll get to use clean(er) loos and have a shower if I want one. Yay!

Had some supplementary blood tests this morning which hopefully will show I'm over the infection at least. Will only get the results once we're already half way to Somerset. I doubt very much I'll be asked to turn back! Got an ultrasound the day after I come back though, and apparently a PET CT scan soon after that to check my native kidneys are ok. Not going to worry too much about that til I return though.....

Throw more drugs at the problem

It would seem it's just a bog-standard kidney infection, just in the new one. So hurrah, kinda. Got some antibiotics, more tests tomorrow to see how things are, and hopefully all will be well....

Blimey :(

So I wake up this morning on the 6 month anniversary since the transplant operation and, as if to remind me not to get too comfortable, my new kidney is aching and tender. :( I've been feeling a bit poorly all week, so when I went in I made sure to let the Dr know what was going on - fortunately it was one of the good ones that I trust not to fob me off. He decided just to see what the blood tests say but have me come back next week instead of two weeks time, or earlier if I continue to feel crappy. I questioned my MMF levels and the useless doctor last time who'd fobbed me off and given me a prescription that none of the local chemists could fill. Today's nice dr checked the levels and seemed concerned they were too high and packed me off to the hospital pharmacy to get the new drugs, which I now have in my hot little hand. New side effects? "Excessive unexplained bruising and flu-like symptoms". Nice. Wonder how much damage I've done by taking too much mmf the last few weeks cos no-one bloody checked it?!

Twas a long clinic - I waited 45 mins after my actual appointment time to get seen, then another 25 mins to get my bloods done, then another 40 minutes to get the damn prescription. What a waste of time. I asked one of the HCAs what the hold-up was with the bloods to see if I could drop off the prescription and come back , but was told very curtly that I had to stay and shouldn't complain about the waiting and it can't have been that long. Gah.

And to top it all off, one of the guys who had his tx around the same time as me was in clinic. He's having some rejection issues and is a bit sad about it, which is fair enough. But today he was saying that if the tx does fail, he's not gonna go back on dialysis. "was it that bad?" I asked. He just nodded and said he'd rather just make the most of his time and then "go to sleep". I figured as he's a bit older I could sort of understand that, but still; hearing that some feel dialysis is that bad is a depressing thought. THEN the guy on the other side of my chimed in saying he felt the same and would "get himself a gun" if he needed to.

I had a bit of a minor freakout. I mean, there's a lot of energy goes into telling people you can live a pretty good life on dialysis and yet there are some who'd rather not try? Scary stuff. I had a sudden sense of how fragile the situation is despite how well things have gone so far, and although I've been 6 months and not had any real problems yet, I'm now cacking myself about the test results from today. I'm certainly hoping I don't have to give up going to Glasto. I'd be completely devastated.

:(

6 months tomorrow!

Was meant to be going out for dinner with me donor but she has a previous engagement with a certain Ms Spears at the O2 *lol*

Have been feeling really good recently but, sadly, not this last week. Very tired n dizzy and a low level UTI, bah. Still, clinic tomorrow, then next week GLASTONBURY! Am slightly scared but can't bloody wait to go.

Cret. dropped back to 12-something but is now back up at 14-something, which now appears to be set at my baseline.

Went to find out about doing peer support recently - reckon I'd be grateful to have someone my own age or situation to talk to me. Also got conned into doing an Abseil off the Guy's hospital tower in August. Heh. Looking forward to that and should raise some good money for the kidney association :)

Been a while

So it's been a few weeks - I'm finally down to one visit to clinic every two weeks. But on the flip side, my cret went back up to 148, bah. I did miss a dose on Monday night though, purely forgot, nothing else.

Feeling pretty ok in most ways now, am loving doing Pilates, apart from anything else it's a really good opportunity to think about nothing except what I'm doing at that moment, which I really appreciate. Still get tired a lot and some days the stairs to the train platform are still waaay too long but it is getting less frequent.

Can't wait to dump the prednisolone; I already seem to be losing the moonface a bit, although I'm still way lardier than I would like generally. Working on it slowly though. Have also been abroad for work twice and am going on holiday next week to my place in France for the first time in three years, brilliant!

Watched a few episodes of ER tonight - was rather side-swiped to find my favourite character Carter is a dialysis patient, and the next two episodes see him get really sick and then get a transplant. I know it's ridiculous cos it's only a telly program but I could totally identify with his desire to self-contain the problem and not let on to people what was happening. It was also the first time I've had even the slightest inkling of what it must be like for the people around watching while you get sick, or waiting for the transplant and whether the operation would work and all that. What a nightmare. Made me really sad! But then ER often does that. Was a bit of a shock, I wasn't expecting such a strong reaction. Feel quite guilty for what I must have put people through and that I didn't acknowledge it more at the time. Guess I was a bit busy though.... :)

Procrastination

So I'm meant to be preparing a presentation for work. Hence why I'm here. :)

Creatinine has stayed down around the 127 mark, hurray. Idiot doctor last week confidently predicted it was a blip and that it'd go back up again, saying I must not have been eating properly that week. How wonderfully helpful. *lol* Thankfully he appears to have been mistaken!

In other news, the saga of side effects continues. I've got an infection in my toe, of all places - making it hard to walk as it's all swollen n painful. Hoping it's an infection rather than gout anyway! (yikes) Off to the GP on Monday morning to check it out.

And, much more sadly, I'm losing my hair a bit. :( Pulled huge clumps of it out in the shower this morning which was quite distressing - I love my hair and I'd be truly gutted if it fell out. Must bring it up at clinic next week. Stil. Given the choice between having a bit less hair on my head and loads more on my face and upper body, I'll take the first one. Feels terribly vain and ungrateful to be moaning about it.

Off to Holland for work, first time away from London really since the op. Hurrah!

Unexpected!

Creatinine's dropped to 127 - the lowest it has been since mid-January! :) F**king yay! 

Not getting over excited as it may scoot back up again next week, but I am hopeful it may be settling lower, which is great!

Still on weekly hospital visits but I've also been given permission to go on holiday to France next month so yay for that too. :)

Rah

TOP weekend of random fun. Drank rather a lot of port, which on reflection probably wasn't the best idea! But for the first time in goodness' knows how long, I was able to just head out and see where the wind took me instead of having that invisible Cinderella clock ticking and warning me that I'd be running out of energy soon and I needed to rein it in a bit. Yeah, I was tired by the time I headed home on Saturday night but so was everyone else! Really rather great to feel almost normal. Normal is good. You don't appreciate it til it's absent. 

Next challenge: going to Planet Angel on Friday. Eep. Not sure how I'm gonna feel about clubbing after a couple of years off but only one way to find out!

In other news, J and I are going out for dinner tonight. I think it's the first time we've managed to catch up just the two of us since before the transplant! Will be lovely to see her. And noodles and sake too, I'm sure. *omnomnomnom*

Kidney still not behaving properly; creatinine is hovering between 145 and 150. Doc I saw last week said that given the donor being young n female they'd prefer it to be nearer 100. But I feel good so as long as it's not going up and all the other indicators are sound, I'm not gonna worry about it too much. Have cut the steroids down a little bit too, which is great. Just wish I could stop eating so much!!

End of another week.

So - after tinkering with my dosages and having that UA scan, my creatinine has... barely moved. Dropped to 147 from 151, barely a whisker. Urea was way up so perhaps a little dehydrated. Got a stinker of a cold today so gonna take it easy over the weekend, although not entirely as it's my Dad's 60th tomorrow and I have to show my face at that, for sure.

No call from the clinic as yet, so assuming there's no changes to make this weekend.

Quick and easy

So after all that chat on Friday about this test maybe taking a couple of weeks, they called me

 back Friday afternoon to come in to Ultrasonic Angiology this morning! Had the test, sonographer/radiographer type person has a poke around and tells me there's nothing wrong with the artery. This is a 'yay' as it means no angioplasty, but also a 'boo' as it means we still don't know what's wrong. Hoping now that the reduced Tacrolimus dosage will be enough to show some improvement. Tests on Wednesday so I guess I'll find out sometime on Thursday.

Tis somewhat frustrating going to clinic now. Most of the nurses have great memories and know who I am, but the doctors are a whole different matter. Seeing a different one each week I can kinda deal with, but really, how hard would it be to take five minutes to LOOK AT MY BLOODY NOTES before you ask me into the room? They barely even know your name, and I spend the first five minutes of each appointment updating them on what is happening, what I've had done recently in terms of tests and drug changes and so on. Doesn't exactly inspire confidence in the fact that they're taking any time to actually look into your situation. I do appreciate that being a kidney patient does mean a lot more hands on involvement in your treatment than a lot of other long term conditions but it does sometimes feel like you have to drive it a bit. One week the registrar I saw basically abandoned the consultation because she couldn't read the notes the previous week's doctor had written. And they apparently complain about having to use the computer! At least there'd be no handwriting issues then! :)

Ooh that was a bit more of a rant than I intended! I'm not complaining about the standard of clinical care. I just think that in terms of how they deal with patients it'd be nice for people to feel that they are individuals instead of just the next pile of notes to be processed. Like so many other situations I suppose!

Weekend!

Promises to be a busy one - got a drinks thing tonight, followed by all day in a pub for the brilliant Laura's grand re-opening of The Bedford Arms tomorrow, then a trip to see Charles Darwin's house in Kent on Sunday. Will try not to have more than a couple of drinks throughout the day - a slight challenge when watching three Six Nations games in a row! :)

Just had a call from Liz, the transplant sister @ Guy's - they want to reduce my Tacrolimus dose as I've too much of it in my blood and it may be causing the creatinine spike, so down from 5 to 4mg twice a day. Which ironically means taking 8 x 1mg tablets instead of 2 x 5mg ones so my pill count goes up, not down *lol*.

They also want to do an Ultrasound Angiogram to check the artery to the new kidney, as they fear it may be narrowing, which would also account for the creatinine spike. Quite a specialised test apparently in that only one Radiographer @ Guy's does it so it may take a couple of weeks. Can't be that urgent then!

So at least there's some things to look at and try to get the damn numbers back down!

Really need to knuckle down with some work this afternoon, but the hospital news is always so damn distracting!

Boo

*sigh* Cret bounced back up to 151 yesterday, eGFR down to 34. Bah!!! WHY?! I feel fine, better than in ages, not messed any drugs up, not done anything wrong. And it so immediately affects my mood, I almost wish I hadn't checked the damn thing.

Sunny day

Popped to clinic this morning for regular meetup with doctor and to have blood taken. Told to keep everything the same and come back next week. Heh. Was in and out within an hour; new world record I think! Quite like this Wednesday clinic lark, seems quieter than the other days. Sure I'll be there all day next week now.

Odd side effect of moving to once weekly testing is that I'm now on tenterhooks waiting for RenalPatientView to be updated with my results so I know whether my cret. level is still heading in the right direction or not! :) Probably won't be published til tomorrow, though. And still SO much quicker/easier than waiting for a call or a letter to get the results.

In the meantime I shall continue to enjoy the sun streaming through the studio window, struggle with getting on with some work, and listen to the guy drilling holes in my bathroom wall. 

Finally!

Today is the first Monday since the transplant that I haven't had to go to clinic for blood tests! I'm down to one day a week as of now. It feels positively liberating, although slightly odd at the same time to not have that extra security blanket of twice weekly testing. The puncture bruises in my arm might actually start healing - heh. 

Strangely though I still have to go to Guy's today, just to have my mouth ulcer checked by a hospital dentist. Should be a fairly simple in-out visit as I'm fairly sure it's totally fine now, but would rather have a proper dentist confirm that before I go making assumptions. I also need to find out if I'm ok to go get my eyes tested, too... seriously considering getting them lasered this year if I can afford it. So much for avoiding medical procedures this year! Think that's slightly different though.

Got plans afoot to go over to France for a bit in May, which I am REALLY looking forward to, and some festivaling in June! :) Couldn't even consider that this time last year, so feels really good! Also got to squeeze in another 5 days of holiday before the end of May as it's a "use it or lose it" scenario at work. Extra long Easter, perhaps. :)

Oh and - creatinine has continued to drop, down to 137 now, which is in the right direction! I want it down at 120 or less, doctor on Thursday said 130 would satisfy them, but I might still need another biopsy. I think the Tacrolimus levels might be a tad too high, but I shall wait til Wednesday and my next appointment before fretting about it. 

Feeling vaguely human again

... for the first time in ages. Finally got the creatinine dropping again - back to 144. No additional biopsy or scan next week. Phew!! Just keep taking the tablets....

Been working out a little bit. Very sore now! Worth it though, endorphins are handy little beggars.

Also back to work properly now (well, part time at least). Gonna visit the office next week for the first time in ages. Oddly looking forward to it!

Back to work

Just turned on my email after three months - 997 so far,...

*twiddles thumbs*

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. 

Phew

The stent is out!! :) I already feel better as a result, whether that's psychosomatic or not, who cares. Had another ultrasound on the kidney - the top edge of it isn't perfusing well, which we already knew, but the rest of it seems to be working well and the blood flow is ok so the cause of the cret. jump is most likely just me not drinking enough fluid. I shall be more careful for a while. Currently I feel like a barrel, having drunk at least 2 litres since I got home from clinic at 3ish this afternoon!

Some of the side effects are really starting to wind me up, particularly the nervous tremors and excess hair growth. Small prices to pay though after today's mini wake-up call!

Heh - looking at the post titles for the last few messages I've clearly had a bit of an up n down month. To be expected, I suppose. Hope it evens out over the coming weeks!

Spoke too soon

:( Nurse called this afternoon to say Cret has gone up to 145 which is too high, so I have to go in tomorrow AM for some urgent bloods and a scan before they decide whether my stent removal op can go ahead as planned in the afternoon. 

I've been feeling a bit rough this week, fighting off a cold and all the tremor-y tingly symptoms have been around quite a bit. Bah! Here's hoping it's just a little glitch, could even just be that I'm not drinking enough water or something!

Woo!

Finally down to two visits a week as of now! Mondays and Thursdays. Ironic really that my cyclosporin number has been all over the place, giving me the shakes really badly. I've not been sleeping well either - nurse reckons it may be the prednisolone. I dunno, but I am very very tired and been feeling quite poorly the last couple of days, but we've cut my cyclo dose down and hopefully my body will even out later in the week. 

Got my stent removal scheduled for this Friday (when they take out the plastic tube that's currently in my bladder supporting the connection to the new kidney) - can't wait, I'm very aware of it now and could really do with the related pain going away! 

Have also just started to do a little exercise again - just a short home circuit, 15 minutes worth. Managed it once so far *lol* and it utterly exhausted me! Second go a little bit later. Might have a nap first though....

Bound to happen eventually...

... I've caught a cold :( Nothing serious, but just tinged with a tiny bit of paranoia for obvious reasons, as I don't want any risks to my new kidney. The clinic nurses say to keep an eye on your temperature and if you start feeling really ill to call the ward or go to A&E. I'm sure it'll be fine though, just gonna stay in, keep warm and have some hot toddies! :) I've also got an infection in my jaw from a mouth ulcer that refuses to heal, which is really irritating! Like toothache, but more generalised.

This getting better lark is a bit of a full time job in itself! Take yesterday for example; get to clinic for 10, do all my usual weight/bp/temp measurements, wait to see the nurse, get fluid and bloods taken, wait around for an extra prescription (I've been put on statins cos my cholestorol is way too high), drop it off at the hospital pharmacy, then go up to the dentistry department to get a check-up there, then back down to the pharmacy to pick up supplies, then off to the GP to pick up another prescription I'd forgotten about when last there, then to the chemist to pick that up, only to be told they don't stock it and I should try somewhere else.... I needed a nap by the time I got home! :)

Hopefully from next week onwards I might be able to cut the clinic visits down to twice a week instead of three times a week which would be nice. Creatinine is hovering around 110 and my GFR is around 49-50 which is fantastic! They've finally started to talk about cutting the dosages too, very slowly, over the next couple of months. Can't wait to be having less steroids, getting rid of the shakes in my hands will be wonderful.

Also now have a date for my stent removal; the stent is the plastic tube that's currently in the connection between the new kidney and my bladder to keep it open while the surgery heals, which comes out after six weeks. I'm hoping that I'll stop having pain in that area once it's out, or maybe they'll find out why I'm still getting pain when they do the cystoscopy to get the stent out at least.

Feeling quite sad today. I've had quite a good few days, catching up with people and feeling good, so to wake up feeling so poorly again this morning is a real downer. This to shall pass, of course. Just a reminder that I need to take it easy and not rush back to everything.

Hmm, bit of a slip up

I appear to have got a little bit complacent today! Not only did I forget to take my morning dose of cyclosporin after clinic today, I also forgot to take my daytime dose of the other immunosuppressant, *and* then cooked myself some lovely venison for dinner but made it too rare but ate it anyway, which I'm not supposed to have at the moment (they recommend us transplantees eat like pregnant women after surgery, for completely understandable reasons)!

What am I bloody playing at?! Testing myself or something? Rebelling against being so regimented and careful? I can't help feeling like I'm pushing my luck, but in some odd way I'm doing it deliberately and I don't know why. Called the out of hours number in a panic earlier, they reassured me and gave me some instructions to get back on track. I've just managed to scare myself into being more careful in future rather than cause any kind of real setback, hopefully. I fully expect a telling off from the doctor on Wednesday morning, though, and quite right too.

I'm being a lot more careful about my physical recovery; not lifting anything heavy or doing too much, the lady with the hernia I met is a real cautionary tale to me. A couple of hours of activity still leaves me really shaky so there's clearly still quite some way to go yet.

In other news, the aforementioned venison, cooked with blueberries, was glorious; my first foray into new cooking skills was a success! :) Got some mates coming round for dinner twice this week so I have some new things to try for them also. Mmmmm.

Happy New Year

Had a very relaxed New Year, just a couple of friends over, dinner and a bottle of wine. Packed a few other friends off to various clubs and found myself grateful I didn't have anywhere else to be! :)

Feeling decidedly porky now - have put on half a stone compared to what I weighed before the surgery. Putting it into perspective it's only back to about what I weighed before I got sick in late 2007, but it's really the moon-faced-ness that I can't abide - I know it's all to do with the drugs but I really don't look like me when I look in the mirror, and the bulge around the site where they did the operation means I can't get into many of my pre-op clothes, so it'll be tracksuit bottoms for a while longer yet.

G and I managed to leave the house together at the same time for the first time in weeks today; his labyrinthitis is still there and I can't walk very far or very fast, but we made it up to Camden and managed to find some furniture that we liked, hurray! Finally we're going to start being able to unpack properly!

I now have designs on getting some kitchen gadgets, so I can learn a few cooking skills like I planned while I continue to recuperate. Reading back over the last couple of weeks, I have a feeling it'll be two steps forward and one step back for a while yet.... must try not to be too impatient to get better.

I think sometimes I forget what a big deal this has been/is/will be, cos it's become kind of every day while I'm in it. Then at the oh-so-regular clinic I talk to others, people at the same sort of time frame as me, especially the ladies I was on the ward with, and I'm always so impressed at how well they're doing and how amazing it is that lives can be changed so dramatically by the medical team, and then I remember that that applies to me just as much.

I got asked what my New Year's Resolutions were the other day. Aside from not spending any overnights in hospital, the only thing I can think of is not to waste any time. :)