Other people

I've not told anyone I'm doing this blog - or at least, I've not given anyone the address. I've not really wanted to, it's seemed terribly self indulgent and whingey, and I worry that people will think the worse of me for complaining. Like the other day at work when someone was saying we'd have to excuse them if they were a bit behind cos they had "a bit of a cold" (not even man flu, mind ;)) - I almost said something like 'well f**k you mate, you don't know what ill is!!!' and then I checked myself immediately! I mean, a) I don't know what's really going on with that person and b) even if it is "just" a cold, everyone's stuff is all relative, innit, plus c) I don't want anyone thinking I'm making excuses if I take a day off or whatever. I'm mostly holding up pretty well, though, I think.

Anyway. The point of this post was meant to be, if anyone else is reading this apart from me, don't think any the worse of me!! This is where all my self-indulgent whingeing goes so I don't inflict it on anyone else in the real world any more than is necessary to stop me going barmy! :)

Still here

Checked my last set of test results. It's really handy having them online, I hope they keep doing that. My creatinine is now 333, which is as high as it got when I was in hospital last November. GFR is down at 14, the lowest it has been apart from when I was really ill.

Just for a frame of reference - creatinine is a by product of muscle work in the body. Normal levels are below 100, but someone with serious kidney failure who needs dialysis suddenly could have anything from 300 to 1000, with the latter making them really really ill. GFR stands for Glomerular Filtration Rate and relates to how quickly your kidneys remove waste products from the body. A "normal" level is conveniently 100, so as it drops many people sort of refer to it as a percentage, even though it isn't really. Kidney failure comes in 5 stages:

Stage 1	GFR = 90 mL/min or more
Stage 2 (Mild Damage)	60 to 89 mL/min
Stage 3 (Moderate Damage)	30 to 59 mL/min
Stage 4 (Severe Kidney Failure)	15 to 29 mL/min
Stage 5 (Established Kidney Failure)	Less than 15 mL/min or on dialysis

At least now when I quote numbers there's a reference somewhere on the blog if anyone reads it!

I'm anaemic and my phosphate level is creeping up. Really want to avoid having to go onto phosphate binders or start watching my diet. Being able to eat what I like (within reason!) has been one of the things I've been really grateful for up to now; having to have certain tablets before food and stuff like that would just be such a downer. Will just have to keep an eye out for getting itchy or generally feeling rubbish and see what happens!

I'm going back for another HepC vaccination in a couple of weeks. Might see if they'll give me another iron infusion at the same time, might perk me up a bit.

Tired

Had an appointment with my kidney doctor a couple of weeks ago. Record quick time - I was in and out having had blood tests and HepC vaccination AND seeing the doctor within half an hour, that never happens. So the kidney surgeon asks if I've heard from the liver surgeon at Kings about my liver cyst surgery. "No", I say. He leafs through my notes and says, "oh, we didn't copy you on this one"... turns out, after the original appointment at Kings, the liver surgeon wrote back explaining the options (before/during/after the kidney transplant), saying he preferred to do it after. My kidney surgeon wrote back within days, saying they wanted to press on and do it before the kidney transplant. SIX FUCKING WEEKS passed, and I heard nothing - the only reason I know they even corresponded is cos I got the Guys secretary to send me a copy of the letter.

After a week of unreturned phone calls, I finally emailed the Liver surgeon and his secretary (again) to find out what was going on. I've now got an appointment to discuss it next week, after much hassling, but the surgeons says he won't be able to do it til mid August cos he's away most of July. If they'd pulled their fucking fingers out I could be having the liver surgery now, and have it all over and done with. I realise there's a risk but at least this way I might have had a choice about it....

Because, unfortunately, mid-August is also the time that I'm probably meant to be having my kidney transplant, if my donor is fit to proceed... so I may have to miss out on getting rid of the liver cyst because I need 4-6 weeks to recover before I can go back under the knife again. I can't even fold my arms over it properly without it being painful, I just want it gone. I don't know whether to complain about the frankly awful communications skills from the liver outpatients department. It's not fair that I have to keep chasing these things up!

Then there's the possibility the liver surgery could tip me into needing dialysis, and I don't want to have to do that until we've moved house, so I have the option of installing the hemo equipment at home rather than having to do PD or go to the hospital every day....

Dealing with things

Was listening to a conversation among friends the other day about people looking good, and whether they do it for themselves, or for others. I tend to think it's a bit of both, but mostly for the self, and it's a self-fulfilling thing - if you feel good, then you look good, which makes you feel really good, etc. 

It set me thinking - I've been making a bit more of an effort with my appearance since the last hospital stay in November - when I came out and they said I was gonna need a transplant probably in the next year, and put me on pre-dialysis "training courses" and so on, the whole thing became so huge that it was all I'd think about or all anyone would ask me about. A couple of weeks after I came out of hospital, I went and dyed my hair brick red, and also started buying brighter colour clothes, having been a khaki/black/white kinda girl for years. 

When you're ill or have an injury it tends to start defining you; like when I was on crutches after my knee surgery a couple of years ago, it sometimes felt like it was all anyone would ever talk to me about. I dyed my hair in total reaction to the fact I was sick - it meant that people would say "wow!" when they saw me rather than ask how I was getting on or get lost for words and just look at me sympathetically or whatever. It gives people an "in" - or an "out", if you look at it the other way I spose.

As it happens, I absolutely love the colour, so does my boy and I seem to be getting away with it at work too, so everyone's a winner :)

Got another check-up at the hospital on Monday. I feel pretty okay this week actually.... a bit tired  but nothing terrible. My liver cyst is giving me way more grief than my kidneys are. Not quite sure what to do about that. I really really want it gone, but I don't want to risk ending up on dialysis unnecessarily either.

On top of all that, we're trying to buy a house!!!

We *might* have done it, too. It's all just pending the surveyor telling us it's okay now. Might even be able to complete in a couple of weeks. That'd be cool. The idea of being able to decorate it however I want and hammer nails in the wall without fretting makes me happy - it's a whole new project, I spose! 

The whole thing got very much accelerated by the likelihood of me needing major surgery later in the year, coupled with our landlord wanting to sell. I still think it's the right thing to do, though, even if the papers are predicting doom. We're buying a home, not a profit margin. :)