What a difference a day makes

After feeling so down yesterday, I had an early clinic appointment this morning and the doctor I spoke to (in contrast to last week) was really friendly and helpful, answered all my questions and gave me some insight into what's ahead. My bloods are coming back with all the right numbers and my new kidney is working at almost the maximum that they'd expect right now. I still feel quite poorly at times, and I've got 3-6 months of this heavy duty immunosuppressant and therapies to get through. The risk of rejection or problems is at it's greatest right now, but by the summer my drug regime should be a lot more manageable, hopefully.

The average life span of a transplanted kidney right now is 12-14 years... it could be lots shorter or longer, but I've got the best possible chance of longevity, having been young for a transplant, having a young and healthy living donor and not having any other accompanying health problems. I'm very lucky also to have avoided dialysis.

My priority once I've healed up from the surgery is gonna be getting fit, and then finding myself some sort of activity to keep me active; I definitely need to learn some sort of new skill to keep me interested. Climbing, circus skills, some light martial art like tai chi... could be anything! In the meantime, while I'm still stuck at home recovering, I may try learning some new cooking skills to pass the time and help with the whole not getting too fat thing.

Got a quiet dinner planned for tonight's NYE celebrations... looking forward to 2009 more than I could possibly have hoped!!

:(

Very very bored now. Christmas was great as a distraction but as the return to normality for all approaches next week I find myself dreading potentially weeks and weeks of dullness ahead. Feel quite poorly today, actually, and the surgery scar is really sore.

I'm probably just feeling a bit sorry for myself, but I took stock of myself earlier and I don't like what I'm seeing - my face has got all podgy and soft round the chin, presumably a combination of the weight I've put on (still 3.5kg more than before the operation :-( ), and the "moonface" side effects of the drugs that I'd been warned about so much (something about the drugs changing the way you store lipids in the body). I've got a huge pot belly on one side from the surgery, and I've yet to try any of my pre-op jeans or trousers to see if they'll still even fit! How ironic - I was looking in better shape body-wise than I had in years and it's all gone to pot so quickly. :(

Still haven't seen any cyclosporin results either, the damn testing lab hasn't put them up online. If I don't have any updates tomorrow at the doctor's clinic I'll be most unimpressed.

Time flies!

Wow - it's now 16 days since my transplant, 10 days since I came out of hospital, and Christmas has been and gone!

My scar is healing well, I don't have to dress it anymore. It's still quite scabby and painful but thankfully looks all clean. So much bigger than I was expecting - from my groin all the way up to my hip bone. Quite neat n tidy though. We should get on with planning our tattoos!

Drugs wise, things are pretty heavy going. Think we've counted it's about 35 pills a day in total at the moment, but hopefully that'll drop off in the next few weeks. Side effects are manageable but still nasty - really bad shakes and tremors after I've taken each dose, still very over sensitive fingers and toes, I can't tolerate heat and cold well at all, which is odd. On top of that where before I used to get very cold feet, my temperature control seems to have gone the other way and I'm now often too hot - we've even had to switch to the summer duvet cover!

The nuttiest thing is how AWAKE I am. I'm barely managing 6 hours sleep a night before I'm all bright eyed and bushy tailed again, whereas before the surgery I could easily sleep 10 or 11 hours at a time, with a nap in the afternoon. :) I wake up wanting to do loads of things. It's really quite exhilarating! Once my body has started healing better it should hopefully start being able to catch up with my brain. That'll be fantastic. :)

Saturday clinic

Odd going into the hospital this morning - Boxing Day clinic moved to the Saturday, which seems fair enough! Was nice to see all the ladies I was on the ward with before Christmas - all seem to be doing well apart from one who's still having issues with swelling. All the kidneys are working though, which is brilliant.

I'm a little worried as my cyclosporin level is apparently too high, and my cret has jumped back up to 125 from 108, with GFR dropping from 51 to 45 :-/ They've said they're gonna leave things as they are til I see the doctor next Wednesday though. Guess I'll just have to trust them. I can't get the Renal results website to work so I can't see what the results from today are yet.

I'm sure it's all fine, but you can't help being concerned. Every little ache and pain sets an alarm ringint at the moment; I used to know my own body intimately, every little signal about what I needed or didn't need. But they've all changed now and I'm having to learn new ones every day. My body shape is different, my heart rate, blood pressure, everything. It's a bit scary but also very interesting. So amazing that this works - I'm taking the whole thing in my stride, but at the same time completely floored by the whole experience.

Merry Christmas

I've had such a lovely Christmas. Frustrating at not being able to host my own house very well, but my wonderful mates came to the rescue and Did Christmas for us here, which was brilliant, and I hope a fabulous time was had by all. Managed a glass of champagne, but had to have a bit of a lie down afterwards. ;-) Thank you guys, you rock.

People keep telling me how much better I look - that I've colour in my cheeks and a sparkle back in my eyes, which is nice to know. I think it's one of those things where because the decline was so gradual people really didn't notice except for me.

The big blot on the horizon is my poor boy - he's got labyrinthitis! Can't sit up without feeling dizzy, what a nightmare. Thankfully it doesn't appear to be contagious, but between us we don't quite make up one fully functioning human being, which makes life somewhat difficult at home! Still, we're managing and it'll get better over the next week or two!

Leaving hospital....eventually!

I was really sad in a way when Johanna left on the Monday - felt like I was missing my partner in crime, so to speak. Glad that my grandparents got to meet her before she left though, was nice to see them able to thank her for the brilliant thing she's done for me. On the other hand, I was really pleased that she could get home to her own bed and everything. Felt a bit lonely briefly, but sure enough the bed was filled again within a couple of hours!

On Tuesday I finally had my last tubes removed - my god I hate having a catheter, it's such cruel and unusual punishment having a tube where there really shouldn't be one. Also got my first opportunity to actually check out the scar - it was much wider than I expected, but I am actually oddly proud of it cos it shows what we've done. :) Must get on with planning those tattoos J and I talked about getting. :)

Wednesday morning - doctors rounds first thing and I was told that I could leave once my bloods were back and my creatinine was confirmed as being stable (somewhere around the 120 mark - brilliant!). So lunchtime came and went...

... and dinnertime...

.... then the daytime doctor apologised, saying that all the other bloods were back and he didn't know what the problem was, but he was going home and the night doctor would sort it.

I must admit I had a bit of a sense of humour failure - I hadn't slept a wink the night before and simply couldn't face the thought of another night like it. Just wanted to get home to my bed! This despite me only being six days post-tx so it was already an early discharge, but I was getting rather impatient (which in itself I took to be a sign that I was feeling good).

By 8pm I'd decided I was going to discharge myself, but thankfully I got the results I needed at 9.30 and was home by 10.30. Brilliant. :) Had a celebratory late night pizza with our flatmates and slipped off for a restful sleep.

Quickie

Haven't been able to update my blog while in hospital, but got let out tonight so I'll be able to update/backdate for the last week with pics n stuff soon :)

All's apparently working well - creatinine is down to 120ish. More to follow after pizza n sleep :)

Hospital recovery

I'm not going to try and do daily updates for the bit where we were in hospital, cos one day kinda merged into another, really... just to give you an idea though, here's a rough sort of schedule.
6am ish - wake up for obs including having to stand up for blood pressure
7am - lights on (eeuurgh)
7.30am - blood test
8am - breakfast and morning drugs
10am - doctors rounds
12pm - lunch and lunchtime drugs
2pm - visiting hours start
6pm - dinner and dinnertime drugs
8pm - visitors mostly leave
10pm - night time drugs

Sleep was pretty hard to come by at night, a combination of some very poorly chests belonging to other patients, machines bleeping, heating engineers in the middle of the night with jangling keys, howling winds at my not-quite-shut window or, after Johanna left on the Monday, the incredibly loud snoring of the lady who ended up in the bed next to me. She was truly epic - i had earplugs in and an iPod playing tunes and it was still louder than both of these. :-O

Met some lovely ladies in the ward, one who had donated to her teenage son and one who had had a cadaveric transplant a couple of days before mine. All the nurses and doctors, dieticians, pharmacists and so on were simply brilliant, thank you so much to everyone on Richard Bright ward.

The day after

Again, not a particularly restful night after the operation, as they do checks on you every hour. Should mention all the staff on Richard Bright ward, they are bloody brilliant, there wasn't a moment when I wasn't totally confident in how I was being looked after the whole time. It's all a bit hazy, but by Friday morning we were both kinda coming round a little bit and had some visits from J's parents, Arif, Len, James, John, G and Oli and possibly one or two others too (again, it's all a bit hazy). Having our beds next to each other made the whole thing so much better. I can't imagine how frustrating and worrying it must be for husband/wife donors who can't be next to each other! There was a lady in the ward who had donated to her son, but he was a paediatric case so was at a completely different hospital!

Being a bit more awake, I was able to take note of what I looked and felt like [skip to the next paragraph if you're squeamish] .... my hospital ID band was cutting into my arm from where they'd done it up quite tightly before surgery and then pumped me up with 5-6litres extra of water - looked a bit like a baby elephant in the arms and legs for a couple of days there! Also became aware of the three lines coming out of my neck for blood and fluids, which J said made me look a bit like The Borg in Star Trek. Add to that the drips in each arm, the evil evil catheter and the nasty wound drain coming out of my side and I wasnt really able to move much at all. Oh and an oxygen mask as well.

Best bit was when the doctors did their rounds and told me my Creatinine was down to 195 - before the op it had been well over 400, so to have the kidney working straight away was really brilliant!

The big day

Early start for us - more blood tests, after a night of IV fluids and antibiotics and immunosuppressants and so on. Arif, Len and Johanna's parents were there first thing for her, as she was taken down for surgery really early, about 8.30. I don't recall much, but I absolutely fell to pieces as she was waving on the bed being wheeled away. It was probably the first time it really struck me properly what was going on and what she was doing for me.

I hadn't had much sleep overnight, so I kinda dozed all morning while G sat waiting for more info... think they took me down about midday in the end. Waited in the pre-op bit for an hour I think, long enough for Johanna's surgeon to come in and tell me her op had gone fine and she was just finishing off, which was a relief to hear.

I remember being wheeled into the anaesthetic room and thinking how bloody cold it was, and asking why it's called an Operating Theatre, cos they're not acting, at which point they knocked me out (Hazel says it wasn't cos of my bad jokes).

No memory at all of recovery, the next thing I remember is G making me take my night medication back in the ward quite late at night and being very dopey indeed. They told me it all went well. Lots of tubes and lots of beeping. Must have been very noisy for the other people on the ward that night, the IV machines kept waking me up for sure.

Was really reassuring to see Johanna in the next bed and quickly wave at each other before passing out again. :)

Admission day

(So I'm gonna try and fill in the blanks for the last week now but I'll date em in the right order! Apologies - particularly to Johanna the sub editor - if my tenses get mixed up between past and present ;-) )

Transplant admission day! Met Johanna at Embankment so we could book ourselves a place to eat for our evening escape and then wandered along the river in the sunshine to Guy's. Met Madeleine in the clinic, had some blood tests and then were taken along to the ward - felt strangely like we were off to a festie, what with packing face wipes and being ensconsed in blue plastic like a tent.

Then we were seen by the surgeons who were doing our operations and signed consent forms and so on - they drew on us, just to make sure they did the right bits.

They also told us that J's kidney had two arteries on it instead of one (her body clearly wanted to hold onto it), which meant the op was a tiny bit more complicated and there was an increased chance the kidney might not work straight away when it was connected, which was a bit of a worry. Only 4-5% though, so we tried to put it out of our heads.

... once that was all out the way we went out for pizza along the South Bank with a few people, which was a nice distraction. We played the "kidney" card a little bit to make sure we could get a table; possibly cheeky but how often do you get to have that excuse to try and blag something?? Then had a nice last drink with some friends at the BFI bar and caught a train back to Guy's.

Got back to the hospital about 11pm... Can't recall if I slept much really, hospital wards are not the most restful places, but more on that later.

Just to answer re: the op!

A number of people keep asking this, so I thought I'd explain. The operation is to give me a new kidney, but they don't take the native kidney(s) out, they just add a third one in another part of the body! The operation to remove a kidney is quite a big one, so they don't take out the recipient's native kidneys unless they are infected and causing other problems.

The donor kidney is inserted into the abdominal cavity, just above my groin. See the diagram below:


Apparently afterwards, you can feel it there(!!) It's deep enough into the body to be safe, but not safe enough that you can do major contact sport or anything really. As it's quite shallow compared to the native kidneys, they can also easily do biopsies on it if I have a rejection episode.

In most kidney disease patients, the native kidney simply shrivel up when they stop working. Mine (because I have PKD) may carry on expanding - they are already 3-4 times normal size. Normally a kidney is about the size of your fist, but mine are around 25cm long each, apparently. They are actually quite uncomfortable, but I've kinda got used to it, so if in the future they keep getting infected then I may ask them to operate on me again to take the native kidneys out.

One day left

That was as busy a weekend as I've had in a long time!

I spent Saturday doing my Christmas shopping, then met Johanna's Dad, which was really nice, then had a very pleasant evening eating, drinking and playing Trivial Pursuit with J and our respective boys.

Sunday after a brief stop at Planet Angel *Chilled*, which looked like it was gearing up to be a great one when we left, we wandered over to the Hippodrome to see La Clique, which was absolutely marvellous!! Go! If you like circus type acts it's simply brilliant.

Then we were taken on a trip round the Christmas Lights of London on a Routemaster Bus, by some lovely friends who just happen to own one :) Marvellous!

Adjourned to a local hostelry for drinks afterwards, where I proceeded to have a bit of a meltdown - had a few more drinks and it all felt rather hedonistic, in a 'last chance' sense, although hedonism for me is now three glasses of champagne and feeling legless *lol*.

Had some lovely chats and eventually rolled home when the pub closed. Fortunately I had the good sense to have some food and drink before bed so I felt ok in the morning. Good job too, as we had our meeting with the independent assessor from the Human Tissue Authority to decide if our transplant was going ahead freely and fully informed. I nearly scuppered the whole thing by forgetting my passport so I couldn't prove my identity, but I managed to sort it fairly easily with a mercy dash home. The priest we met was a really nice man, and it was a lot less scary than I thought it'd be.

Another afternoon finishing off buying Xmas pressies, and finally home last night in a somewhat knackered state.

Today I've mostly spent cleaning the house and prepping for our admission tomorrow.

I had to start taking the cyclosporin this morning - daily pill count now = 13 pills per day. 8 in the morning and 5 at night, plus the weekly EPO injections. It's only going to go up for a while yet! They weren't kidding when they said the cyclosporin smells bad either. Bleh!

Here are the pills - and one of the larger 100mg ones next to my thumb for a size reference.

It's the size of one knuckle!

The booklet listed a whole bunch of side effects. So far the most noticeable one is that my fingers and toes are really tingly and I can't cope with anything really hot or cold, so I guess it's hypersensitivity of nerves or something. I also feel quite nauseous but that could be anything, really.

I'm still not particularly nervous overall, but I'm not excited anymore either. It's odd - I'm not really thinking about the operation itself much at all, I've had a few in the last few years and I've total faith in that area. I'm still terrified that it'll go wrong afterwards or not work or something but the odds do seem to be in my favour at least.

Yipes!

Unexpected side effects

Not from drugs this time, but from acupuncture! 

Went to my third session this morning at the Polyclinic. I really do think they've been helpful, as cynical as I was about it before I went along. Was interesting learning that we apparently have six pulses in our wrists, not just one, and there's different ones relevant to each major organ of the body. Today there was one particular point they tried, and while it was only a tiny bit uncomfortable physically, the emotional reaction was so strong I actually started crying, so I had to ask them to take it out again. I asked them what it was at the end, and apparently it was one of the needles they'd decided to try to support my kidneys and bladder. I seriously wasn't expecting that! 

They're all proper intrigued about the surgery now; apparently in Chinese medicine, all your Chi (or Qi I spose if you're a Scrabble fan) is already stored in your kidneys when you're born and then is distributed around the body, so the idea of adding a third kidney (rather than replacing one, which is what they thought was happening) adds a whole new dimension to things for them, both in terms of what my kidney pulse will be like afterwards and how it will affect the rest of my body, flow of energy and suchlike.  I'm gonna start going again as soon as I feel up to it, cos the energy increase I've had since I started the sessions really has been noticeable - and I'm intrigued too about how a transplant is dealt with in the body from their point of view.

A couple of hours more work to do, then a meeting with my boss in the States to pass things over, then I'm done working. Three days of mad rushing about will follow, including meeting my donor's Mum for coffee, having dinner with my donor and our respective (lovely!) boyfriends, a Sunday afternoon gathering at Planet Angel *Chilled*, then I'm off to La Clique at the Hippodrome, and finally a trip round the Christmas Lights of London on an old Routemaster bus! On Monday Johanna and I are going shopping - this seems like the best excuse possible to get a new dressing gown and slippers and any other treats we might fancy...

Then, on Tuesday I'm staying at home in anticipation of the nasty side effects I've been warned about for my first huge dose of the Cyclosporin (immunosuppressant drug). :-/ Hopefully it won't all be as bad as I've built it up to be in my head but I'm fully expecting to feel really poorly for the next few weeks at least.

I definitely felt that life was dragging a few weeks ago. Since we've had the confirmation everything seems to have shifted up to 5th gear and I'm struggling to keep up! Lots of enforced rest coming up though.

Looking ahead

Had my last day at the office today. Finally mentioned to more than one or two people what was going on. Everyone was lovely. On reflection, I probably should have told people earlier, but I wasn't really in a headspace to answer questions, mostly because I was still distancing myself from the fact that this was going to happen. It really wasn't til we started thinking that we were definitely going ahead, just a couple of weeks ago, that I started to look forward to this instead of trying to blot it out - possibly also due to the fact I've started to not be able to explain away feeling poorly to other reasons. It actually feels more worthwhile, like it will make a positive difference.

J also went for her chest x-ray and ecg today - thankfully it didn't take very long!

I've got acupuncture tomorrow - probably my last session before the surgery. I have got rid of the anxiety dreams and poor sleep, which is brilliant - hopefully a combination of the acupuncture, finally getting my decision and realising that half the reason I was waking up in the night was down purely to my useless kidneys overproducing poor quality pee (yeah, I was surprised too), rather than me being constantly woken purely by anxiety. They are lovely at the acupuncture place though, so that'll be nice to see them once more before the day.

Still petrified by the drug regime that's approaching - got to start taking immunosuppressants on Tuesday. 5 tablets, exactly 12 hour apart every day, from then until the kidney stops working. Apparently they (cyclosporin) stink, so most people advise that you take them out of their packaging a few minutes before you're due to take them so they don't make you feel rubbish.

Tomorrow is my last day working for a few months. That'll be weird.

End of term-itis

Last day in the office today - trying to tie up loose ends, make sure nothing drops while I'm gone. Nothing will of course, cos I work with some fantastic people, and they've all been brilliant throughout this rather trying year.

Not long to go now

Had yet more tests at the hospital.... chest x-ray, ECG, more blood tests, MRSA swabs and so on and so on... managed to catch up with Johanna (my donor) in the clinic as well, cos she was there seeing her surgeon. Hadn't seen her since we got the confirmation, so that was lovely.

Also went to a pre-op meeting where they told me all about the process next week, admissions and all that. Apparently once we're all booked in and have seen the surgeons and suchlike, we can go out of the hospital for a bite to eat. Still need to get to grips with the idea that I'll be back at the hospital at least three times every week for the forseeable future, months and months, while we try to get my immunosuppressants right.

This time next week we'll be in!

Eep

So I asked for another patient to be able to call me back, another peer support effort, so I could ask about the post transplant drug regime. I guess I was looking for some reassurance that the side effects wouldn't be that bad and that the numbers involved wouldn't be scary. The operation doesn't worry me at all (although it probably should!) - it's the post transplant immuno-suppressed status and how I'll end up with awful things like oral thrush(?!). I'd also been warned about looking "moon-faced" cos the steroids make you change the way you carry fat in the body, and getting excessively hairy.

Wasn't the most reassuring conversation I've ever had.

The lovely lady who called told me:
- she went into the hospital a size 6-8 and came out a size 14 because of the water retention and steriods, nine days later.
- Daily tablet intake immediately after surgery: 45 per day
- Over a year later: still 6 per day

On the upside, the moon face thing eases off as your dose of steroids starts to drop a few weeks in, and the hairy thing probably only means "plucking your eyebrows a bit more often".

Nice!

This is the reason I've kinda been avoiding getting to this point and not thinking about it much. Most people assume that the transplant is the end, the solution, the completion. The truth seems to be that kidney transplant is rather just another form of treatment for kidney failure. I am pissed off about that fact and haven't quite got my head around it yet. Here's hoping it's worth it.

Good timing

Got my blood results back - GFR has dropped from 14 down to 10, and cret.up to 440 from 339, which are both big jumps. The GFR is probably just about at dialysis point, most people go start at about 9 from what I understand. Doc said yesterday the trigger is usually when someone would feel better on dialysis than they do without. Seems fair enough!

Hopefully I get to skip that now. :)

Have told work people and mates and even put a thing on Facebook. Hello if you're reading from any of those places *wave*

Bloody hell

Madeleine just called. We're going in for surgery next week!!!

And there's a whole bunch of stuff to do before then - ECG, chest Xray, antibody testing, legal meetings and all sorts. In the next 8 days. 

Faaaack.

:)

I had some really horrible infection over the weekend, was in agony Friday night, rubbish. Judicious application of antibiotics, hot baths and calming down by the lovely boy prevented me from panicking too much or going mad from the pain and worry. I hope so much that they stop happening so easily after the op is done. It's really draining worrying like that.

Clinic today, nothing new, usual quickie questions after a 2 hour wait, blood tests etc. Get results in a couple of days time. J's eye test was all clear, so it looks like we're on for next week! *sharp intake of breath* We're having a nice dinner on Saturday night to celebrate and I think I'm gonna go meet J's Mum as well. Hopefully it'll help her make sense of what J's doing to meet me in person.

Feeling oddly underwhelmed by the news, which makes me think I haven't worked it out yet. Off to see Eddie Izzard tonight. Woohoo! Guessing I'll freak out about half way through the gig or something...

Off to see the Human Tissue Authority people on Friday - guess I should call Madeline tomorrow as well to see if there's anything else I need to do.

Yikes!

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!! :)

Back from Austin. Still a teeny bit jetlagged but I'll get over it soon enough, I'm sure. Was a good work trip, got lots done and was nice to see people over there. 

Very very very cold in London this week!! Glad we got our heating working (yay for friends who are electricians!), it would seem it was just in time!

Ten Gallon Hats ahoy

I'm in Dallas. On my way to Austin for work things. Hoping to keep myself occupied with work things til my possible tx date comes up.

Why is it so impossible to say no to free champagne? I had three glasses on the plane and felt quite hammered. But you just can't say no to it... I tried to form the syllable in my mouth but it just wouldn't come *lol* And it was rather nice champagne, too. Bit hungover now, and in the lounge waiting for my connection to Austin.... with a very large vodka. 

\Doh. 

:)

... or not!

Heh - knew that was too soon to put up!

J's had another call saying they're still not sure if she can donate after her biopsy, so while we're still aiming for December, she's got to have yet more tests involving flecks in her eyes and checks in her ears?! Sounds very odd to me.

And just when I'd got my head round it being the right thing to do, too. Serves me right for getting my hopes up. *sigh*

I can't help feeling this is gonna be a no, now. The longer it drags out the less like it is, surely? And if it is, does that mean it's another 8-9 months of this with someone else, and no guarantee it'll even work? Perhaps I am gonna end up on dialysis after all. Wow, this not knowing is getting very dull indeed.

In other news, I have booked loads of work travel - off to Texas next week, Paris at the start of November and then possibly Singapore, Sydney and Tokyo in the middle of November. Tx co-ordinator said I'm fine to travel, shouldn't need to be around for any tests. Hope they're right. 

They've given us a date!

Still pending J's biopsy result, but assuming all goes well it could be happening on December 5th.

Blimey. 8 weeks today. 

*aaaaargh*

Can't think of a clever title :)

So I've had yet another set of tests - everything's ok with calcium and phosphates and all that, which is good, so no dietary restrictions still. EPO and iron infusions have fixed my anaemia and on a day to day basis I actually feel better than I have for ages. Which makes it all the more ironic that we may now have a date for a potential tx. Cret is 339 and eGFR is 14, which is as bad as it has ever been, but no worse really than before I had the liver surgery. I'm SO grateful I forced that through, I was feeling so much worse for the enormous lump in my side. Life has been way more pleasant since then!

J is still waiting on her biopsy result! *sigh* Poor thing, must be agonising to wait for such things when you know there's nothing wrong with you! She's such a star. I can't imagine going through all this shit when I've no need to, I resent it enough as it is! If she can donate, she understandably wants to do it before Christmas so she can recover before her final term at Uni - and that means we're being pencilled in for the first couple of weeks of December!

Only I'm now also being asked if I want to go to Asia on a work trip, which I'd really like to do, but it'll be in November and I don't know if I can be away that close to the surgery - aaaargh. Must call Madeleine and find out what the coup is with that. Heh. At least i'm not letting it stop me living my life, eh?! 

Had a bit of a meltdown about the actual tx and what happens after that, but I think I'm over it - or at least I'm more prepared for it now. Will go see people at the clinic for more info I reckon. Interesting discussion recently at clinic about the fact that pre-emptive transplant patients don't have the same appreciation of the transplant as dialysis patients, as they don't feel the more obvious benefit and aren't used to the more stringent drug regimens, etc. Wonder if anyone has studied this element?

Thought of a new way to explain my situation when people ask me how I'm doing -  I call it the Spinal Tap analogy (only works if you've seen the film, obviously).

You know how they turn it up to 11?

Mostly I feel like I've been turned down to about a 5....

Time passes

Tick tock tick tock :)

Just got back from a week's holiday in Devon, living it up with 16 friends in a gorgeous Art Deco villa near Plymouth. Messing about in boats, dressing for dinner and generally having a lovely time.

Check this out for a view just wandering down the road - felt weirdly like being in the Mediterranean...
We had a fantastic couple of days going oyster hunting in the shallow water and generally messing about on boats, even rowing to a recommended local pub and feasting on fish n chips n beer.

Managed to forget about things for a couple of days almost completely, but also had a couple of moping attacks when I couldn't keep up with walkers or had to go to bed early cos I was tired or couldn't finish that last glass of champagne cos I knew I'd feel shitty the following day. 95% great though :D

Back now though, and back to the grind of getting things done and finding out what's happening next. My lovely friend J has been in for a cystoscopy (yowch) and a kidney biopsy, they're definitely being thorough! She's also been to see a psychologist, who now wants to see me as well so we can be checked to make sure I'm not paying her and she's not hero-worshipping me or anything. Which is odd, but fine I spose!

I've got another set of blood tests and follow up appointment this coming Monday, along with an appointment with a surgeon to talk about getting a fistula created in my arm. In a way, I'm quite looking forward to it cos it feels like progress, but in another I'm petrified, cos to be honest I've been pootling along quite happily the last few weeks and upsetting the status quo seems so bloody unnecessary. But then I read things like Big Buzzard's blog, which give me such hope of how I might feel when it's all done. Does feel like rather a lot of pressure. I mean, what if this is just me and I don't feel any different afterwards?! What a waste of time for J if that's the case!

My lovely boy is still being lovely. :) His stoicism is both a blessing and an irritation depending on my mood, but overall I wouldn't change a thing. Now we're both back home we've still got a load of DIY n stuff to get done. Gonna chill today and have a last day's holiday, then tomorrow do some painting n sorting out, I'd say! SO much to do....

Moan

I was just about to go onto a Kidney Patient forum and moan about things, but I got half way through writing the post and it all sounded so bloody bleating that I just deleted it and came here instead. 

I've just had a bad few days, I suppose. I haven't been able to get through a day without finding myself in tears for one reason or another and it doesn't seem to be getting any easier, either. I just don't seem to be able to see a way through everything. In a way, I kinda want things to stay as they are, I mean I'm *ok*, not great but not too ill. I just can't imagine it getting better any time soon. I'm either gonna be dialysing, which will be a pain in the arse (well, the arm), and most people seem to agree that the start of dialysis makes you feel worse rather than better, which doesn't exactly fill me with joy! Or I'll be having a tx operation, which is gonna leave me on more pills than you can shake a stick at, probably make me put loads of weight on and generally be in more of a state, at least temporarily.... I dunno.

Maybe I just need to stop reading that site. Everyone seems to be down about their situation. It could be that I'm only seeing the negatives. 

At least it's not as bad as the US sites, where everyone goes on about having to cope with this terrible disease/affliction bla blah blah.... I can't hack all that woe is me stuff, but there does seem to be some genuine bad shit that happens to people during the course of all this.

It just all feels really rather lonely at present and I don't have anyone to discuss how I feel.  I can only bore my boy with it so much, he puts up with loads, the poor thing. 

Generally feeling a bit sad. :(

tick tock

Went to see the kidney team again last week. Got some good news in that none of my blood results have got any worse (in fact they've improved a little since the liver surgery, hurray!), hovering around the 300 mark and a GFR of 15, but the trend is gently and slowly getting worse, so we're looking again at what happens next.

I mentioned that I preferred the idea of home haemo but the Doc thinks I won't be on dialysis long enough to merit that kind of building work in the home, which I suppose is a good thing. People on the kidney BB keep going on about PD but I honestly just can't imagine having a tube in my belly all the time and walking around with all that extra fluid and how it'd make me feel, it just seems so alien. :-/ I'm told I can't have PD for a while anyway, cos I've just had surgery on that area and my insides are probably not ready for it, also the doc seemed to think my kidneys may be too big for the PD fluid to have room anyway. So, the upshot is they want me to come in and have a fistula (access point in my arm for dialysis - basically a very enlarged vein) built soon. I spose it's the right thing to do but it doesn't make it any easier to think about! I'm on EPO now as well which I have to inject myself with. Scary.

Still hoping I can avoid the whole dialysis business by having a transplant, obviously. But my donor has more tests to have  and I can't help thinking that it's becoming less and less likely as time goes on. Madeline seemed to think it's 50/50 now depending on these results. If it's a no, then I've got at least another 6 months of this to go through while we test another donor I suspect.... can't think too far ahead. HATE that. 

Been reading about people's experiences with dialysis and transplant - things like people's hair falling out, and loads of different drug names and doses and the fact no-one can quite agree on what the right doses are, etc etc... I'm freaking out a bit to be honest. What I wouldn't give to be told that all's okay and I won't need anything for a few years yet, wouldn't that be wonderful.

:(

Work is difficult, I can't think straight or do too much, but I keep second guessing myself as to whether it's physical or mental distress which is doing it, or if I'm just using this as an excuse to be lazy. *shrug*

Organ Donation

I'm amazed at the number of people who are still so ignorant of this subject - obviously it's quite important to me now, but since I was old enough to get my own driving license I've been on the organ donor register.... more importantly I've discussed it with those who are important to me so they know what I would wish to happen.

It's probably quite ironic that most of my organs would be pretty useless to anyone else now, but my lungs, heart and corneas are probably still good enough if anything were to happen to me. I'd give blood if I could but for obvious reasons it's not that great an idea for me!

Got really annoyed by an episode of The Simpsons recently as well where Homer is asked to give his Dad a kidney. They were so full of shit - saying things like "wow, you've substantially shortened your lifespan to help your Dad!" and showing him repeatedly running away from the Op. Way to go to encourage selfless behaviour *lol* I know it's only a cartoon but the lifespan thing just isn't true, for a start!

So yeah. I guess the point of this was to encourage people to think about it a little. Whether you decide to go on the Organ Donor Register or not, it's certainly something everyone should try to discuss with their families and loved ones.

Busy!

Clearly I've been pretty busy, it's been nearly a month since I updated this!

So.

We finally moved house on July 20th, thanks to lots of willing hands and mates n things. Had a couple of days to just start getting ourselves together when G headed back up north for work. Then on the 26th I went in for the liver cyst operation at London Bridge Hospital. 

I react badly to general anaesthetic. Just like last time, I woke up and instinctively wanted to get out of bed, which is tough when you can't actually move, having been attached to the bed by tubes and things on all four limbs plus a catheter and an oxygen mask over the face!  Poor G had to sit and watch me sleep and cry and generally be useless all weekend. Got out of hospital on the Tuesday, which was great. Had a week and a bit off work to recover, first day back today.

We've done a bit more decorating, and hopefully I'll be able to paint this week while G's away up north.

I feel pretty good at the moment - better than in months, actually. I think I'd really under-estimated how much the liver cyst was affecting me and bringing me down. I've had flashes of feeling really great - almost feels like I don't need the kidney transplant now. Wouldn't it be great if I went off to hospital next week and they said they'd made a mistake and all's well?!

Assuming that's not a possibility though, donor stuff is moving on at a good pace and I may still be on target for the end of September. Eek.

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.