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!