Back on the rollercoaster

A lot can happen in a week. :)

Spent last weekend painting and doing up the new house, which was very satisfying.

Monday - finally got around to seeing some relatives and telling them about the liver surgery, which was good. Also collected some furniture, all very productive.

Tuesday I called the liver department to find out why I hadn't been sent any admissions information only to be told that my operation had been cancelled! And when exactly were they going to tell me that, I wonder? When I turned up ready for surgery?? I completely crumpled. Thankfully my boss and team were great at work and I took a couple of days off work the rest of the week to sort things out. Crumpled again on a fantastic mate on the bus that evening but managed to have a pleasant pub evening at the end of it all.

Wednesday I found out the carpets for our new place were being delivered, and fitted on the Friday. Brilliant news! Coupled with all the plumbing/fixing/decorating work it means we can move in this weekend. I also got hold of my private healthcare people through work, who agreed to cover my liver surgery if I went privately so I kicked that off with Kings College Hospital as well. Still hadn't heard any more from the liver dept NHS team. Still freaking out about the fact it's not happening, but happy about the house move.

Thursday Worked as normal (well, ish) and then went to see my liver surgeon. It's the same surgeon, probably at the same hospital too, but I'll be able to get it done next weekend (Saturday 26th) as it's being done privately now. Crazy. I'm glad it's sorted though.

Friday Took the day off to do house and hospital related things. Knackered all day. Can't lift anything heavy which is increasinygly frustrating. Good after-work pint catch-up too, much needed. We also had our first meal in the new house in the evening while building flat pack furniture. :)

And now it's the weekend again. Bought such odd things as curtain rails and sheets and the like. Probably not that healthy to be looking forward to shopping for a washing machine, is it? :) And tomorrow we're MOVING INTO OUR NEW HOUSE! No internet for a week and a half. I'm sure we'll manage though...

So now I'll be going in for surgery while nearly all my friends are at a festival next weekend. I suppose in some ways this has worked out better than we planned - having the surgery privately means I'll probably be in and out more quickly and will certainly receive more direct attention from the surgeon, and I can be here this weekend to do the house move.

Now, best go out and look at lampshades.....

I suddenly felt very under the spotlight at the weekend - I was at an impromptu BBQ/party, when after a bit of food I suddenly felt quite sick. Took myself off to the empty kitchen for a few deep breaths. A friend walked in and asked if I was alright, perfectly nice thing to do, but I immediately withdrew and was just like "yeah, I'm fine", and wouldn't let him even touch me, proper defensive and really unhelpful to myself! Stupid. Don't know why I do it, but can't stop myself.

Sat down for a bit and then let my lovely boy know I was gonna head home cos I felt shitty. He came with me, bless him. Got loads of concerned hugs before I left. Just ended up feeling like I'd made an exhibition of myself. *sigh* How do I reconcile the fact that I do sometimes need people to take account of the fact I'm a bit shit at the moment with the fact I want to be treated normally and not like some broken/delicate thing?

Emotional

Tough day at work. Couldn't really keep my mind on anything for five minutes. Told my bosses what's happening and they were pretty flat really, just telling me to get well n stuff. I know I've got full sick pay so no concerns on that front, which is a huge weight off my mind.

I've been coiled up like a spring all day, without really knowing why.... to be honest I think it's purely because i'm terrified about the liver surgery. What if I end up needing dialysis? I'd have to have a neck line for weeks, and then months at Guys til I could be trained enough to do home haemo, and then they have to fit the kit and all sorts.

And still I somehow feel like such a fraud. I don't feel that ill really.... I get by ok. The liver cyst is an irritation rather than something which is harming me so why am I taking such a risk by having it dealt with? Then on the other hand I can't lie comfortably on that side, I can't fold my arms over it and it's stopping me eating proper sized meals. That's another thing, if I get it removed am I suddenly going to pie out again from suddenly having a much bigger stomach?
Then there's the kidney function - yeah, I'm a bit tired but really, there are plenty of people worse off than me, I'm amazed that I can still get on with things with the numbers they say I have, it can't be that bad, but then again they wouldn't be planning to give me new organs unless I really needed them!

*lol* so many thoughts, some more random than others. And they're not really useful to anyone, either.

Rollercoaster day

Saw the liver people, got surgery on 18th July! This does mean that I can't have PD (cos obviously they're opening up my pertioneum) if I do need to go on dialysis, but that wasn't my plan anyway so I'm not too upset by that.

Then while I was in the surgeon's office, I got a voicemail that our house sale has completed and I could pick up the keys, which I have now done!

Just waiting for my babe to come home and we'll check out our new pad :)

Brains are funny things

Lots going on today. My brain decided to deal with it overnight by giving me some serious anxiety dreams that require very little in the way of interpretation! Dreamt I was driving a car with a bunch of people in it and the steering wheel just came off while I was on a motorway. The rest of the people in the car didn't seem to notice as I struggled to get it under control and stop it. Heh. Hardly subtle from my subconscious!!

I'm glad to note though that in my dream I *did* successfully not crash. ;-) Didn't get much sleep though.

Am really quite stressed out about the rest of the day.

...

Got my appointment with the liver surgeon tomorrow. Really don't know what to do; on the one hand I want it DONE. On the other I don't want to upset the surgeon by moaning too much.... they really have been quite shit though. Will just have to play it by ear I spose.

I've been feeling really shit all week. Cystitis won't go away, doctor's given me another week's worth of antibiotics. Other than that I'm also so fucking tired. Walking home from the station earlier I could barely see *lol* Good thing I didn't go to Glasto, I'd have passed out on the second day.

Pick up the keys for the new house tomorrow as well! :) Quite a day ahead...

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. :)

Grrrr

I'm so bored of waiting for things!!

I'm waiting for the tests to see if my friend is compatible to give me a kidney, I'm waiting to see if our house purchase is going to go through or not, I'm waiting for my boyfriend to get home from work, waiting before I can book any fun for the summer..... gah.

I also think I should stop watching the damn news. It's too depressing - between petrol and food prices rising and house prices falling, there's doom-mongering everywhere..... bad bad bad bad!

Still so many questions!

J found out she can't complete her tests for the potential donor kidney til July 1st, so that's at least another seven weeks of hanging around. Meanwhile my creatinine is back up to 300. That's not *so* bad I spose, but it's playing on my mind. The liver blood test showed it's gone back down to 275 which is a bit better... eGFR's steady at 15. I keep reading about people who are down at 7 or 8 before they dialyse so I spose I'm ok, but it's still too damn scary.

So if J is able to donate, it'll be mid-August. So now I'm desperately trying to make sure that the house we're buying is all done and dusted by then. Perhaps I should tell the mortgage people that *lol* They'd probably run a mile and refuse to give us the money if I did.

I've been handling it all quite well really lately, just taking it all in my stride. Or so people tell me. But I think, I mean, what else am I supposed to do? Curl up in a ball and wait for it all to happen? Can't let it take over, that'd be rubbish.

But just for the last couple of days, that ball of stress in the back of my throat is creeping back in. That little lump, like the one you get when you think you might cry. If you give it any credence or any kind of voice it makes you talk to high and get all tearful. Mostly I'm keeping a lid on it by not saying anything to anyone, but in my mind I keep having really dire thoughts. Loads of what ifs. What if J can't donate? What if none of the other lovely people who've offered can, or indeed will? What if I need to go on dialysis before I can get a transplant, or worse before I move house? What kind of dialysis would be least traumatic? I just can't imagine having a tube permanently in my stomach, what a nightmare. At least if I can move house first, I could get the work done to have HaemoD at home rather than having to go to LB every day....

And there it is, that little ball. If I let it grow I'll bawl my eyes out. Just keep a lid on it, tell me to pull myself together, this is stupid. I'm in the best possible position for someone in my situation - I'm not on dialysis, I haven't even got any food or drink restrictions, I feel fine most of the time, it's only the occasional BLLLAAAAAAAARGH moment where I freak out about the future, or when I feel sick, or my back hurts, or I can't get out of bed or whatever it is. A quick burst of COME ON usually sorts it.

Like now, actually. I've got work to do.

*gets coffee*

See - I can still have coffee! Things can't be that bad. :-)

Yay!

Had a really really lovely couple of weeks. Been off to the Dominican Republic for a week on a much needed holiday with my boy, fantastic time, feel really relaxed now. And bless a couple of really dear mates for sorting me out a wicked birthday barbecue (and some nice weather!).

Managed to feel pretty good most of my trip away to the US as well, which I had been worried about. Didn't take advantage of the drinking opportunities. Nice going Business Class though....

Back to the serious business of work and househunting now.