Ali's transplant ramblings and other stories

Tuesday, 9 March 2010

Moving

Hello peeps

Just to say I'm moving my Blog to Wordpress, as it's more flexible and I can post random thoughts from my phone whenever I think of them - can't really do that here.

Sorry for those who've subscribed etc! There'll be RSS feeds etc there too I'm sure.

http://alib1rd.wordpress.com/

Cheers!

xxxx

Thursday, 28 January 2010

Hahahahahahaha!

Monday, 18 January 2010

OW

British Military Fitness = pain

But in a good way though... going back next week!

Friday, 15 January 2010

Life getting in the way

So very, very busy! But this is good!

Spent Christmas with the In-Laws, all very nice.
Games day at our house on the 30th, which degenerated into one cornflake box game, one aborted game of Catan and some poor attempts at Articulate :) Fun though...
NYE at Planet Angel which was cut ruthlessly short by a trip to A&E. Ironically, not for me!! For a poor unfortunate DJ friend who fell off the stage and broke his ankle.
.... and hence I achieved my resolution of no overnight hospital stays in 2009. First time in three years! :D

Hurray for me.

The winter has been the coldest in years so far and the snow only disappeared yesterday... being advised it may come back, too! Thanking the stars that the weather wasn't like this last year, getting to and from clinic would have been hellishly difficult immediately post-op!!

Coming back to work after that lot has been rather a shock to the system, coupled with some unnecessarily stressful extra curricular activities I'm absolutely knackered.

Kidney is behaving. I've also now got permission to try some dimoxonil or whatever the stuff's called to try and stem my hair loss. Hopefully it might help. I miss my lovely long curly hair terribly. I know it's really bloody vain when I should be glad I'm alive and not tied to a life support (cos that's what dialysis is) machine, but now I'm feeling pretty good I feel it's only right to get a bit vain, really.

Have enrolled on a tester class to join British Military Fitness next week..... ROFL. Could be interesting!

Tuesday, 22 December 2009

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!!

Thursday, 3 December 2009

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!

Monday, 26 October 2009

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.

Sunday, 18 October 2009

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!

Monday, 28 September 2009

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. :)

Saturday, 19 September 2009

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!

Thursday, 3 September 2009

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.

Saturday, 15 August 2009

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.

Wednesday, 29 July 2009

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.

Sunday, 5 July 2009

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.

Ali's transplant ramblings and other stories

About Me

Tuesday, 9 March 2010

Moving

Thursday, 28 January 2010

Hahahahahahaha!

Monday, 18 January 2010

OW

Friday, 15 January 2010

Life getting in the way

Tuesday, 22 December 2009

This time last year

Thursday, 3 December 2009

Longest gap ever!

Monday, 26 October 2009

Bureaucracy at its best

Sunday, 18 October 2009

Oh and - we've got a cat!!

Just a quickie

Monday, 28 September 2009

Ooooh

Saturday, 19 September 2009

Wow, check this story out

Thursday, 3 September 2009

Feeling unreasonable. What to do about it??

Saturday, 15 August 2009

Three whole weeks

Wednesday, 29 July 2009

Keep taking the tablets :)

Sunday, 5 July 2009

Stoopid physical infirmities

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Ali's transplant ramblings and other stories

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Tuesday, 9 March 2010

Thursday, 28 January 2010

Monday, 18 January 2010

Friday, 15 January 2010

Tuesday, 22 December 2009

Thursday, 3 December 2009

Monday, 26 October 2009

Sunday, 18 October 2009

Monday, 28 September 2009

Saturday, 19 September 2009

Thursday, 3 September 2009

Saturday, 15 August 2009

Wednesday, 29 July 2009

Sunday, 5 July 2009

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