Last minute wobbles

Guy's phoned me last night to say they were cancelling my clinic appointment and re-arranging for the 15th cos Dr Scoble is away! I gently pointed out that I'd been scheduled for a transplant four days before that so it'd be rather beneficial to have been at clinic BEFORE then. The appointment was swiftly reconfirmed for Monday.

Oh dear. Left hand, right hand... *lol* You'd think it be a priority to update IT in the NHS, but those outsource overpaid buggers like EDS seem to be making a right pig's ear of it. Certain things like RenalPatientView are excellent, but it's all silo'd, none of the different areas seem to be joined up. Every patient has a unique identifier (their NHS number) how hard can it be to run a data warehouse to link these things up? [/process manager]

Might phone Lisa and/or Madeleine later to confirm though and see if I can see them on Monday, too. 

Needles and stuff

I've been sleeping terribly recently and having serious anxiety issues, so I thought I'd try acupuncture, having had it recommended by a couple of lovely people. Went to the Westminster Polyclinic, again on recommendation. Felt very odd. Needles in my forehead, wrists, legs and ankles, the goal being to reduce stress, promote healthy sleep and maybe get some energy back.

Well, the anxiety dreams have tailed off a little (not as serious as they used to be), and this morning I slept all the  way through to 7am for the first time in weeks! Maybe it did help after all. I'll go back on Friday for more, I reckon. 

In other news - we've started planning for Christmas :) Regardless of whether I've had my tx or not, I'll be spending it at home with my boy, which will be fab. Got 4 mates coming over to share the day with us, and if I'm all laid up they'll be doing the cooking - bonus :)

I get to have my own proper Christmas tree this year and everything - and I've even bought a dining table and chairs so we can sit and eat properly! 

Next Monday I've got my next clinic appointment, J's got her sight test and hopefully by the end of the day we'll be able to confirm out to everyone else the date and what's happening, which will then leave us 10 days to get stuff sorted out.

I'm actually excited about it now. Been feeling so rough the last couple of weeks I think I'll actually appreciate the change if it's successful. Last night I went for a quick drink after work and after just one glass of wine felt so poorly I had to leave - and ended up throwing up into a bin in the middle of Regent Street. How embarrassing.  And ironic given how much of a drinker I was in my youth, but rarely if ever had that happen!

So, bring it on, I say. At least next week J will be able to make plans too, must be doubly irritating to be voluntarily going through all this!

Impatient

J and I went to a support group at the weekend for living donors and recipients. It was hosted by this South African couple who had done what we're about to do a year or so ago. There were some striking similarities with my situation (the recipient also had Polycystic Kidney Disease and a sudden drop in kidney function, but had their tx before dialysis was needed), but also some huge differences - donor and recipient both good church going types who don't drink at all and have two children - so we couldn't really ask them much in the way of lifestyle type questions!

The other people there were a family of 3, where the mother has already had two failed cadaver transplants, and now they're planning on getting her husband's kidney - he's the wrong blood group but thanks to plasmapharesis they can "clean" the recipient so that's no longer an issue, medical science is wonderful. I felt so sorry for her - she's clearly so knackered from years of dialysis and was understandably sceptical about how upbeat the group was trying to be about transplants. The nurse leading the group was keen to make sure J and I didn't freak out about how bad this poor lady had had things, but there's no comparison, really.

It was all a bit awkward at first but once we got down to the nitty gritty of questions about scars and so on the questions soon flowed freely. I was ok til the recipient got his medications out. F**k me. It was basically an A4 folder full of little compartments, 2 or 3 for each day, each with 4 or 5 or more pills in. He passed it round but I just couldn't look at it. I'm SO not ready for that bit, just the thought of it makes me really angry. Freaked out a wee bit. I'm sure I'll have to deal with it when the time comes and I'll be ok, but it's just SO not fair. 

Most people think the new kidney is the end of it all, but for me it feels more like the beginning, with all the joy of drug side effects and immunosuppressants to follow - oral thrush, cold sores, hair loss or indeed excess hair growth, getting fat, being "moon faced", constant monitoring for infections like CMV, not to mention the big stuff like more kidney problems or indeed rejection... this could all still be for nothing!! *eep*

We also found out the nurse hosting the group was the one who had set our revised date for December 11th. She told us more about why the extra hearing and eye tests were needed for J, and said the chances of our date not going ahead were "minuscule", which certainly caused us a sharp intake of breath!

At the end of the session Lisa (the nurse) came to check if I was alright and said we could always postpone if we wanted to. As with the last time that possibility was put to me, my immediate reaction was "no", so clearly I know this is the right thing and I'll deal with it fine when it happens, but in the meantime I'm finding it easier to just shut out the detail. 

So very tiring, all this waiting. 

Got some test dates!

Heh - it's a miracle, as J puts it ;-) She's got a hearing test coming up next week at the hospital . I hope they can tell her instantly if there's a problem or not. 

The uncertainty is killing me, frankly. Not literally, you understand! But it'll be nice to know one way or the other, finally!

I feel proper rough these days pretty much all the time. Like having a hangover every single day. How unfair is that?! Payback for all those teenage years of never feeling poorly after a night on the beers, clearly...

Scannnnnners

Lots of ultrasound last week - basically my whole body from chest to feet! Most odd. One on my bladder to find out whether I empty fully or not (which I do, hurrah), one on my kidneys and liver and chest (still lumpy and full of lumps, no surprises there, but none infected so double hurrah) plus checks on all the arteries and veins in my legs. Odd hearing the pulse in your ankle being taken! The guy doing the examination was ever so slightly creepy so I was pretty glad it was over, considering it took over an hour and was done in a cold semi-dark room in complete silence!

Now I'm just waiting to see if J's tests come through ok. I don't even know if they've been booked, though. In theory, if we go ahead it's less than 5 weeks now. I just can't see it happening, to be honest. :-/ Makes me sad, as I've just about got used to the idea! Might be time to call Madeline and find out what's going on with the legal stuff. 

In other news, I'm in Paris for work this week and our new office is right by the river opposite the Eiffel Tower. Beautiful view all the way to Sacre Coeur. Not a bad place to come to work!! :)