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!