NYE

Happy New Year! Hope you all have lovely evenings celebrating the end of 2008 and that 2009 is a healthy, happy year for you full of smarties, lazy days on the beach and scrabble.

As promised, on the left is the article about Oli and I featured in The Sun a few days ago.

I have also entered a competition with a website called Wellsphere to win health blogger of the year (woop woop!). I have added a clickable banner on the right of my blog for lovely people to click on to vote for me.

Please take two minutes to give me your vote!
Here's all you have to do -

1) Click on the banner on the right.
2) Fill in a few details
3) Done!

Thanks so much to everyone who has voted already, appreciating it muchly. See you in 2009!

Putney Girl's Kidney Donor Hero

I hope you all had a lovely Christmas. Amongst other Christmassy antics my day was spent chasing a remote controlled bird round Putney common with two very excited little boys, eating far too much Terry's chocolate orange, tucking into a fab Christmas lunch prepared by my Mum and laughing as a friend's beard caught fire during Midnight Mass. It also marked the first Christmas in five years where I wasn't ill. Lots to celebrate!

The day before the festive period officially started was also full of excitement. Whilst doing a bit of last minute shopping, I received a rather hysterical phone call from Hannah demanding to know whether I was in fact the 'Putney Girl' and whether Oli was the 'kidney donor hero' on the Evening Standard bulletins shown on all the local news stands. Having no idea what she was talking about she shrieked down the phone that she would go and investigate and get back to me.

A little confused, Dan and I set off to find said paper - not as easy as we anticipated as the Mega Mall we were shopping in proved to be like a maze, and Waitrose was no where to be seen. A quick dash through the underground parking lot later and we arrived at the newspaper stand just as Hannah called saying that the article was in fact about Oli and I, and that she and her family had been in a mad dash up the high street stealing all the posters to give to me. (Baring in mind this was almost midnight, they were on borrowed time!) Above is one of their finds.

The full article can be read here. There was also a little article about Oli and I in The Sun the next day but google hasn't found that one online for me yet...

Merry Christmas!

Just a quick blog to say that I hope you all have a fantastic Christmas - eat lots of mince pies, drink lots of sherry and watch lots of crap TV. Amen to that.

x

the little things...

I've talked about the fact that it's the little things that I notice that make the most difference in life post transplant. Today I was presented with a prime example...

There's this escalator going from one tube line to another at Earl's Court Station. When I was living at home I would go up this escalator on my way home every single evening. From the time that I started my Art Foundation year in 2004 to just before the transplant.

I noticed straight away that I was able to walk up this escalator with so much more ease now that I was on dialysis and not just wasting away in studentsville without a clue what was so very wrong with me. And so I made a pact there and then to walk up it every single day to make the most of feeling well again (usually I am one of those people that stands on the right hand side letting the eager beavers rush past). As the months and years went by it became increasingly more difficult to walk up it, sometimes I would feel dizzy and faint as I reached the top and have to sit down for a rest. But I was determined that the minute I stopped walking up it, it was like giving up and I'd become a 'properly sick' person.

After having a lovely Christmas lunch in Soho with people from my old workplace I made my way back to my parent's house, where I am currently residing as I recover from the transplant. Sure enough I came across this very same escalator. After taking a deep breath I decided I'd put little Kasper to the test and see how he faired on the escalator. Before I knew it I had almost reached the top and felt no dizziness or extreme tiredness, even my legs didn't ache much (I say 'much' meaning they did a little, but I am putting this down to the fact that the exercise factor on my part has been a big fat zero recently.) After walking up the escalator I stopped for a second to admire what a massive difference Kasper's arrival had made to me. I almost couldn't believe how easy and normal the trip up the escalator had felt, I was as if I had barely done anything. I then happily jogged (yes, jogged) up the stairs to the waiting train and was on my way.

An update on Oli

Below is photo taken by Oli on an 11 mile hike he went on a couple of weekends ago in Yorkshire. Think that speaks volumes!

staples, guardian and back to work

Lots of nice and exciting things have happened since I last did a little medical based update.

For one I had my staples out. Yep, all 54. It was actually pretty painless. AND they let me keep the staples...definitely something to stick in the renal scrapbook. Other exciting things - I had a photo published in the Guardian (along with this tagalong) which was super douper on the excitement scale. And then the Guardian Weekend magazine published a letter I wrote the following week...which was also really exciting until I realised I actually sounded quite smug (it was the way the letter was edited, I swear) and so decided to keep relatively quiet about that one!

Kasper is still being fab and very hard working. Oli had obviously made him take a crash course on How To Be A Good Kidney In Someone Else's Body in preparation...or maybe ol' Kasper is just a little confused and thinks he is still in Oli's body...either way I'm not too fussed as long as he is working!

My hospital appointments have been reduced to roughly every ten days, which is great news for me - and for my credit card due to there being a huge shopping centre next door. The twice weekly appointments were a little tough on the bank balence, it appears I cannot resist Topshop.

I also went back to work, part time, on Monday which made me feel like an almost normal person for the first time in weeks. Not only was it lovely to see everyone it also really reiterated the fact that I feel so much better after my transplant. I noticed how all the little things I do at work all the time felt so much easier, and less effort. I didn't think twice about jumping out of my chair to pick up an invoice from the printer, whereas before this would have been a real drag.
I don't think I will ever get tired of these little novelties, no matter how trivial they are.

the ex-hypochondriac on route to the OC - Part 4

Whilst having a very overdue sort out on my computer I found the below - the 4th (and final!) part of my story of how I got diagnosed with kidney failure whilst I was in America. The small matter of having a transplant made me totally forget to post it...so better late than never! This part carries on from my rather rushed journey back to London when I was given a weird concoction of drugs that made me behave in a very bizarre manner...

The other parts can be read by clicking the links below...

Part 1 Part 2 Part 3

the ex-hypochondriac on route to the OC - Part 4

Horses aren’t exactly my favourite animal. Due to a notable experience aged eleven on a rather over excited horse in France I have avoided them ever since. So why I announced in the airport shop I was simply just had to buy a little stuffed toy horse is completely beyond me. I’m not sure whether it was the fact that it had cute little magnetic feet or that it was just the first thing I saw but I was most insistent about buying it, and even when my Mum gently insisted that I could spend my money on something else I wouldn’t budge. Bizarre how medication can make your brain work. Needless to say the toy horse is currently sitting on my bedside table and I have become quite fond of it over the years.

After a few over excited shouting incidents on the plane, involving leaning over the seats to the poor slightly overweight Americans seated in front of us and telling them rather matter of factly that McDonalds is very bad for them, we touched down in Heathrow where we were met by my Uncle who quickly drove us straight to A & E at Charing Cross Hospital in London.

The nurses at Charing Cross got quite a shock when my whole very jetlagged family rocked up with a huge file of notes from California and zombied-me in tow. They admitted me immediately, and for the next five days I was prodded and poked, weighed and measured, assessed and medicated and given my first exciting taste of dialysis in London.

In America although my first session of dialysis had made me feel a great deal better by the end of it, the side effects I experienced during were pretty horrible. I would go from feeling boiling hot and wanting to rip all my clothes off there and then to feeling absolutely freezing, so much so that I had to have one of those silver blanket thingies you see people sporting coming out of car crashes in ER and Casualty. But my first session in London was fine, and although left me feeling very ill afterwards I didn’t need to put in an order of silver blankets.

Over the next few days I was introduced to many different doctors and nurses and a certain hospital counselor who had the most depressive attitude of anyone who I have ever met - the less said about her the better. And once I was well enough I was allowed to go home, only returning thrice weekly for dialysis. After a couple of months I was offered the chance to switch to a different type of treatment called peritoneal dialysis which I was able to do at home. The new found freedom sounded great at first but the ten hours a night I had to spend attached to a machine which liked to screech alarms at me at random intervals really started to grate after a while...More on that rather 'special' treatment another time...

Very posh hospital in California. They even billed me for tissues and juice! thank god for insurance.

07/11/08 - 3 weeks post tx - fireworks, ripped jeans and visiting dialysis

Bonfire night was the first time I properly ventured out socially, and not only was this a novelty due to the fact I had been cooped up in hospital or in the house for the past few weeks it was also a 'dialysis' night - in the past Friday nights were always taken up by my lengthy meetings with my blood sucking friend but now I could do whatever I liked with them.

A few friends and I headed down to the river armed with my camera, a big bag of Haribo and some sparklers. A lot of fun was had taking pictures and admiring the fireworks as they reflected on the river. It felt amazing to be out doing 'normal' things and not to feel exhausted or achy. Bonfire night was also the first time I dared put on normal clothes...after putting on my nice black skinny jeans and subsequently ripping them about five minutes later I decided it was probably best to stick to tracksuit bottoms for the near future...transplant tummy is stubbon and isn't going to budge as easy as I thought.

sparkly magic

A few days later I headed down to the hospital to visit everyone at dialysis loaden with some home made rocky road and cards for all the nurses. Strangely I was a little nervous about visiting the place that had become my home from home in the past two years. I hadn't seen or spoken to any of the dialysis nurses since my transplant and I wanted to tell them how fab I felt but I didn't exactly want to waltz in and start shouting about my transplant when the room was filled with other patients who were in my situation a couple of months ago... some who had been waiting a lot longer than me.

As soon as I walked in to the unit, I felt strange - a bit like a spare part I guess. Usually I would wonder in and waste no time in choosing 1 sheet, 3 pillow cases, and a blanket (non bobbly) assembling them on the chair in the way I had perfected over time and then quickly start to get my machine ready.

I chatted with a few of the nurses and gave them my gifts, and then went and spoke to my dialysis buddy Ally. Ally has been waiting for a kidney for longer than I had, and due to her being Asian statistics show that she is unfortunately likely to wait even longer as there is a lack of black/Asian people on the organ donor list. I chatted to her a little bit about my transplant, but I soon picked up on the fact that she found it painful to talk about - and I don't blame her. Being on dialysis for seven years aged 28 is no joke. I can totally see why she finds it hard talk about it. I arranged to meet her outside the hospital instead in the week for more girly chats. But it wasn't until I left the hospital that night that I realised why I felt so strange. I was no longer part of the club anymore - I had moved on into the next level in the kidney failure world, and I was no longer part of dialysis and dialysis was no longer part of me.

Battlefront

I've recently got involved in a brilliant campaign called Battlefront, a Channel 4 programme where young people are given the opportunity to fight for a cause that they really believe in.

Back in October Battlefront had already chosen it's campaigners but were looking for one more. Holly Shaw, a fellow long term dialyser and recent transplantee, put forward a brilliant pitch and was voted to be the 20th campaigner. Since her win she received the call that she had been waiting for and received a new kidney at the end of October. Hoorah! As she is recovering from the op Emily has stepped in to give her a hand and myself, Abby and Freya have also become 'Holly's Helpers' and are currently in talks about ideas for the project.

The campaign is aimed for 14 - 21 year olds and the first episode aired this morning at 11.30am on Ch4 - the series runs through to the summer. We've got some awesome ideas lined up for the campaign so watch this space for more info on the exciting projects...

In the meantime please check out Holly's Battlefront page and also her Bebo page. It's an absolutely fab cause, as I'm sure you'll all agree!

30/10/08 - bye, bye tessio line

'Well this'll be the last time I do this with my line in' was a thought that frequently went through my head as I partook in everyday activities from having a shower, going to sleep or checking my email in the days that led up to the removal of my tessio line. It's funny how you can get used to something quite quickly which is so completely alien to everyone else.

Back in 2003, I had a tessio line put in for about 6 weeks for a spot of hemodialysis before I was to start peritoneal dialysis and I remember the procedure to remove the line being quite traumatic with a lot of 'tugging' and pain. So in a frantic voice I warned the nurses when I got to the hospital that my current line had been in for 2 years so I was certain all the tissues will have 'grown round it' and it was going to be an absolute nightmare to remove. They looked at me as if I was slightly mad and then suggested that if I was that nervous I should have a general anesthetic and stay over night in hospital. I politely declined and promptly sat down deciding to keep my worries to myself!

On the phone to the admissions department the day before I had been told that the procedure was to be done in a side room in the day ward, but if anything went wrong I would be taken down to theatre immediately. 'You mean if an artery is severed or something?' I asked whilst laughing nervously. 'Something like that' was the deadpan reply. Eek.

After a 3 hour wait whilst I occupied myself reading trashy magazines the surgeon finally turned up to remove the line. I was pleased to see he was one of the guys that helped with my transplant and proceeded to quiz him with about a million and one questions about what it was like and how gory it was. I think he thought I was a little strange... Anyway, I really needn't have worried about the actual procedure as after the local anaesthetic was injected in (sharp intake of breath) I barely felt a thing, just a slight bit of pressing but I couldn't believe it when the surgeon dangled the line in front of my eyes four minutes after I had entered the room. I was shocked at the length of it and excitedly asked if I could keep it to show Oli and take a photo of it. This was just too much weirdness for the surgeon who said I could skip the 20 minute lie down that I was supposed to have after the line removal and go straight home. Unfortunatly one of the nurses saw me trying to sneak out of the ward, and marched me straight back to the room (we compromised on a ten minute lie down.)

Me just about to enter the procedure room...

I was so impressed with the scar too - just two tiny dots, a world away from the 2 inch scar above it from when the first line was removed. It even looks like a snake bite. Even better.

The whole experience reminded me how much medicine advances in such a short space of time
- even though it was a small procedure, the changes they had made made a massive difference to me. Makes me wonder how transplants will be done in five or ten years time...will they be growing kidneys out of people's own cells by then? Or will they be able to produce man made kidneys? Or best of all will more people be on the donor list making the wait for organs virtually nothing...?

Sign up here.

28/10/08 - 11 days post tx - a weekend in pictures

Almost as soon as I had got home I reached for the kitchen scissors and chopped my hospital name bands off. After spending so much time in hospital in the past few years I almost started to feel slightly owned by them - especially when they insist on dressing you in gowns imprinted with the colourful pattern of the words 'property of the NHS'. Like I'd ever take one and add it to my wardrobe!

I received lots of beautiful bunches of flowers from people - the ones above are from my Aunt Sara in Canada, and the ones below (and the cute teddy) are from my Grandma also in Canada.



Above is a photo of me standing at the end of my road after my first 'walk'. When I say walk it was more like a stagger up the road and back again but it was a beautiful sunny day and I felt that even getting outside for a bit was a little achievement.

Oli was staying with us for the first week after I got back and we had a lot of fun playing on rockband (or until I nearly burst a stitch getting too over ethusiatic on the drums) Oli was a natural at singing and basically put the rest of us to shame.

On the day after I came home from the hospital Oli's family came down to London for a couple of days which was lovely - I hadn't seen his little brother in 9 years, or even met his little sister Eva, yet! So whilst they headed into central London for a day of shopping fun I kicked back and relaxed and tried to think healing vibes!

27/10/08 - 10 days post tx - 1st clinic and tessio lines

I joined the long queue of people at the post transplant check up clinic at the hospital today. I was bizarrely quite excited about my first appointment - I had spent the weekend literally waiting for something to go wrong and craved the calming words of a Doctor telling me that Kasper was ok, and still happy in his new little home.

After I was shown round the clinic and taught how it works (weight and pulse first, followed by bloods then a trip into the consultant's office) I sat down on a plastic chair amongst all the other patients - some who had transplants days before me, some years before, and then I waited. And waited, and waited and waited a bit more. After about two hours I was finally seen, apparently this kind of waiting time is normal for these clinics. I actually hadn't been to clinic in a couple of years, my dialysis consultant kindly gave me his mobile number and whenever I wanted to see him I would just give him a text and meet him for a chat at dialysis. Pretty handy.

The consultant I saw assured me that everything was still right on track, though he was suprised I still had my tessio in (a line in my chest used for hooking me up to a dialysis machine.) Apparently I should have had this removed whilst in hospital but he thought they must have forgot. Oops. So in his most excited, about to give a present to a child voice, he said 'well, great news you can have it out in a couple of days! Isn't that fantastic? You'll be tubeless!'
I think he was a little surprised at my unenthused answer. Not the usual response you'd expect from someone who had had various tubes in their body for the past few years.

On one hand, being tubeless for the first time in five years was an amazing prospect...I could shower without worrying about infection and wear low cut tops once again...but on the other hand it did scare me a lot. Funnily enough I had actually got so used to having it, that it seldom bothered me. I guess you could say I was almost fond of the little guy, he kept me alive after all.

I was, of course, a little nervous about the procedure but the actual fear really came from the fact that I saw my line as a bit of a safety net - it was a comfort to know that if Kasper did decide to fall asleep for a bit, going on dialysis wouldn't be too much of a big deal...or at least that's what I was trying to convince myself. To me removing the line opened up a whole new can of worms. If anything did go wrong with Kasper I'd have to have an emergency line fitted followed by painful surgery to fit a permanent one. I've always lived on the side of caution when it came to kidney stuff and so by the Doctor telling me that they wanted to remove it in 3 days time I was a little thrown, it seemed quite a big step into normality, one I wasn't sure I was ready for...

Opt Out?

After doing a lot of campaigning for the opt-out system to be introduced at the beginning of the year,  my first reaction when I saw the headlines in today's papers declaring that the Opt Out system was not going to go ahead just yet, was of disappointment and also sadness to those who are still waiting for an organ.

It is a great shame that the UK cannot straight away become an opt-out country especially since research showed that a high percentage of the population support the campaign. One of the things that makes me most sad is the fact the at the moment there is physically not enough theaters or surgeons to take on the sudden increase in transplants that would occur if opt-out went ahead. To put it simply the hospitals are just not ready for opt-out yet. As the head of the Kidney Federation said on the radio today; sadly a donor card carrier may pass away in a hospital with no transplant facilities or be too far away from a hospital with the right facilities, not allowing him to be a donor. Obviously this problem will have to be combated before the government can reconsider opt-out. 

 There are also still so many misconceptions that are floating around when it comes to organ donation and it never fails to shock me when I hear them. There is a distinct lack of education about organ donation in this country - a lot of people just don't seem to understand what they are even signing up for let alone what would actually happen after they died. As I have always maintained it is also a massive taboo subject - nobody wants to think about or talk about death - which is why organ donation should be promoted in a positive light showing it as an amazing footprint to leave after you die. Charities such as Live Life Then Give Life are doing just that. 

Before he died aged 25 earlier this year, Adrian Sudbury, a true hero, started a campaign for schools to educate all 17-18 year olds about organ donation and also bone marrow donation. Just before he died, this campaign was approved and letters went out to every school this year with information packs enclosed. Campaigns like this - especially to young people - will definitely increase the numbers on the organ donor list as the teens will surely bring this topic up to other friends and their family provoking them to think about it. After all, word of mouth is one of the most powerful forms of advertising. 

Whenever I see organ donation brought up in the press - even if it is negative - I always see it as a good thing as it gets people talking and thinking and hopefully signing up. 

23/20/08 - 6 days post TX - home sweet home

The doctors came round on their usual rounds at 8am and announced that they thought I was well enough to go home. By about 8.15 I was washed, dressed, packed and sitting on the bed ready to go, before they could change their minds.

packed up and ready to go...one of my many bags

After a few meetings with the dietitian and pharmacist Oli and my Dad arrived to collect me and drive home. It felt fantastic to be able to walk through the doors and breathe 'fresh' London air after being cooped up in hospital for over a week.

last photo in my hospital 'apartment'

Fresh air! At last!

Despite the fact that I was ecstatic to be home I was also pretty nervous about being in charge of myself, looking after the wound and getting my head round all the new medicines that I now had to take. I knew how frighteningly important they were to prevent rejection and was terrified of forgetting to take them at the specified time. I also couldn't really get out of bed without the help of the electric sitting up gadget on a hospital bed. So I wasn't really sure how I would cope.

Over the 5 years I had been on dialysis I had grown to understand and know my body extremely well. Every little pain or 'weird' feeling I could diagnose exactly what it was from when my parathyroid gland was playing up to high potassium. Leaving hospital with a whole new organ inside me meant new feelings, aches and pains that I no longer understood. It was pretty scary.

In hospital I had the twice a day blood tests to reassure me that Kasper wasn't going to do a runner that day, at home I had nothing like that. Paranoia fully set in and over the next few days every little strange feeling or ache I had I would panic. What was Kasper trying to tell me now? Is he unhappy? Have I done something to upset him??

I had to learn to relax a bit and not spend every second of the day obsessing over my new body part. Luckily I had plenty to occupy me - many friends came to see how I was doing over the next few days and Oli's family also came to visit, which was lovely.

Anyway despite the Kasper fueled worry, there's no place like home.

22/10/08 - 5 days post TX - moving house, byebye catheter and freshly washed hair

After a night on the ward sleeping next to The Loudest Snorer in the World I was finally rid of my catheter which I had literally began to hate. The amount of times the tube got caught up on chair legs or nearly tripped me up was ridiculous. Also having to lug a bag of wee around at all times was neither cool or stylish. But as I have said before you lose all dignity in hospital...and anyway I was secretly proud at what a fine job Kasper was doing.

So without my catheter weighing me down I was able to have my first catheter free shower which if it hadn't been for the icy cold water it would have been quite a pleasant experience. Chilly water aside it was good to have clean hair. My hair over the past few days had somehow started to resemble a greasy helmet. So not cool.

After having very little sleep the night before I thought I'd try my luck and asked in my nicest and politest voice if by any chance, please, that there was possibly, please, any way that I could be moved to a quieter ward, please? And to my disbelief the nurse moved in closely to me and hushed 'there's a private room to my right. It's empty at the moment, but not for long. If you are quick and put your stuff in there - it's yours.' Suddenly I wasn't aware of the 54 stapled wound and was shoving my clothes and dvds and numerous cordials in to bags as quickly as possible. The room was mine! En suite, a window with a view in to the hospital garden and best of all.....a TV! That night as I kicked back to Neighbours I got my first taste of normality....and a good nights sleep. Fantastic.

The new pad

Oli watching the magical TV

hangin' in my new abode

21/10/08 - 4 days post TX - walkies, mac 'n cheese and moving wards

With the help of the nurses I conquered walking around the whole renal block today, I even got a little tour of the theaters. Very exciting. Tiring and painful as it was, it was also incredibly liberating after being stuck in the same room for days.

looking very pleased with myself after the walk

The Doctors still seemed to think I was doing very well as they freed me from some more lines and cannulas and moved me down to another ward - I even got to skip the general renal ward and went straight to the day/short stay ward which was awesome (there tends to be a lot of crazies in the general ward...I avoid going there at all costs.)

packing up my wash bag, ready to go to the new ward

I even upgraded myself to choosing a proper meal off the hospital menu - macaroni cheese and sweetcorn. Perhaps it was the fact I hadn't eaten anything proper in 4 days, but I thought it was absolutely delicious and polished off the lot.

mmmm

Meanwhile, Oli was recovering nicely at my parent's house and being entertained by my little brother, Will.

Oli and Will looking fascinated.

List of lots of meds which I am having to follow closely.

20/10/08 - 3 days post TX - Bambi walking, marzipan and cathater handbags.

I was promoted to the next level of kidney recipient today, as I managed to sit out of bed all afternoon, go on a little walk with the help of two super nurses (doing my best Bambi impression), eat another soup based lunch and best of all I was even upgraded to a pink hospital gown! Fancy.

Catheter handbags. They're all the range doncha know?

Still looking mega puffy. Don't think the gown is that flattering either to be honest...

Oli was doing really well too - so well that to my surprise he was told he could go home today and rejoin normal life. No more cannulas, needles or sadly for him, IV paracetamol. Oli and I both grew very found of our six hourly IV paracetamol and even started craving it...probably not a good thing! Before Oli packed up his suitcase and put on trainers for the first time in 4 days his lovely Grandparents came to visit - all the way from Leicester, and we had a nice afternoon chatting to them.

Yummy treats from Hannah - lemon tart and a Milo marzipan cat.

After Oli was collected and sent back to my parents house to re-cooperate I was all alone in the hospital for the first time in days. It felt really strange without him but luckily I was kept occupied by plenty of visits from family and friends and of course the almost hourly bloods, doctor poking, drug taking and wee measuring...

19/10/08 - 2 days post TX - tomato soup, sitting out of bed and the big weigh in

I totally forgot to mention in my previous post (think I was blocking it out to be honest) when I listed all my lines and tubes I was attached to, that I also had a drain tube next to the wound on my tummy - it drains out any excess blood or fluid. It was only a small tube so I didn't panic too much when the Doctor informed me that it was time for it to be taken out. It was only a thin tube and so I thought although it wasn't going to be the most pleasant experience I'd ever had it wouldn't be too bad...boy, was I wrong.

The nurse snipped a little stitch which was holding the line in, and told me to take a deep breath. I presumed she was going to slowly and carefully prise the tube out...but noooooo, with both hands she yanked the tube out as hard as she could and I think the patients in the ward downstairs will have heard my scream. The line was roughly about 8 inches inside me and as she pulled it out pain shot through my body like nothing I'd ever experienced. I promptly burst in to tears and couldn't even speak afterwards. The pain subsided a little after a few minutes but I was fairly in shock at how little warning I'd had, however perhaps if the nurse had told me beforehand 'oh by the way, this'll be the most painful thing you've ever felt' I may not have been so obliging to have it done in the first place....

After I had recovered a little, the nurse give me a wash (I swear you lose all dignity in hospital) and then slowly adjusted my bed so I was in a sitting position She then helped me swing my legs over the bed and gently stand up. This whole process took about fifteen minutes as I had been lying down for so long my chest needed time to readjust and I felt really out of breath for the first few minutes. Once I was out of bed though I felt so much better, and like I was actually on the road to recovery.

First time sitting out of bed - woo!

Lots of cannulas

The Doctors all came round, and my results were still looking great which I breathed a big sigh of relief about. I was still suffering from extreme paranoia about Kasper packing up and not only was I worried for myself I desperately didn't want to let Oli down. So when they told me my creatine was down to 90 I was ecstatic. By this time I had been pumped with quite a lot of fluid, but I was producing so much wee that I didn't really feel that heavy. That coupled with the fact that I hadn't really eaten anything in the past few days I thought I might have even lost a little weight. So when the nurse helped me sit in the weighing chair and my weight came up as 8 and a half kilos over my dry (pre dialysis) weight I almost passed out. How my body could hold an extra 8 and a half litres of fluid I had no idea. It was then I glanced down at my thighs....they looked HUGE. Ah, so that's where the fluid is then.

Introducing old school Kasper to new school Kasper

Today even marked a very special occasion - my first meal post transplant! Ok, so it wasn't much - a cup of Heinz tomato soup and a cheese sandwich - the ultimate comfort food - but it tasted so good. Especially since pre-transplant I wasn't really supposed to eat tomatoes or soup (potassiumy and salty, a big no-no for renal patients) it made it all the better.

Yummy yum yum

Oli's bed space was needed for someone to have emergancy dialysis in the evening so the nurses pushed his bed along side mine which was a bit of a novelty as in the high dependancey ward the beds are really far apart and you would literally have to shout to the person next to you. So we had nice chats in to the evening, until we fell asleep, comparing cannulas and discussing all the things we wanted to do when we 'got out'...

18/10/08 - 1 day post transplant - sponge lollypops and clickable pain relief...yum

I frequently pressed my pain relief button all night and day which caused me to drift in and out of sleep, but this only took the edge off it. I was also experiencing a lot of pain in my left side…bizarrely this was the side that Kasper was plucked from Oli. I have no idea whether this was anything to do with the nerves that Kasper brought with him, but a few days later I even noticed a strange bruise on my side where the kidney would have been in Oli. Crazy the way the body works.

The main transplant Professor visited me who assured me everything was fine and dandy and my creatinine was down to 90. Considering the Wednesday before the operation my pre dialysis creatinine was 806 - this was just incredible. Creatinine is basically a measurement of nasty toxin levels in blood and urine which reflects the glomerular filtration rate (GFR). The GFR is clinically important because it is a measurement of renal function...hence giving me an indication of whether Kasper was behaving or not. Thankfully he was! Oli had trained him well.



Despite the fact that the kidney was doing wonders for my creatinine, I didn’t exactly feel my best. My memories of the day are rather blurred and hazy – probably due to the anesthetic and pain killers. After talking to various people I gradually began to remember more about what actually happened on this day…

Paranoia took over me and I was constantly worrying that any minute Kasper would decide he didn’t like his new home after all, but fortunately a new obsession was born when Dan, my boyfriend, conveniently sat at the bottom of my bed next to the urine collection bag and was amazed by the amount of wee going in there and became oddly obsessed with how quickly it was filling up. Every few minutes I would hear an excitable yelp "another 50mls Hols!" which went someway to reassure me...until he got bored. I then subjected him to my constant barrage of ‘how much have I peed now??’ every thirty seconds. Think he may have started to regret his sudden interest in my wee.

As much as I appreciated having lots of visitors, everyone had a habit of leaning on the bed making it wobble and causing me pain. Unfortunately the ultra sound guy didn’t exactly get this as he not only lent on my bed but decided to sit on it, and sat on my catheter tube at the same time…eeek!

The ultra sound itself was amazing though. I was shown my new kidney working away, and it was incredible to think that less than 24 hours ago this very kidney had been in Oli’s body completely unaware of the big journey it was about to embark on.

The anesthetic had put my tummy to sleep so I wasn't allowed to eat for around 48 hours until I made a ‘bottom noise’ (think the nurse thought I was about five). I still had the IV fluid drip which was keeping Kasper busy but this didn't stop me feeling mega thirsty. Having a dry mouth and lips made it harder to talk which I found really frustrating. All they could offer me was a tiny lolly pop sponge soaked in water to suck on, which literally provided about 3mls of water each time - and seemed to make me want to drink even more. My Mum’s biggest hate in life is sponges - she must have had a bad experience with one in a previous life or something and I could see her wincing with a grimace everytime I asked her to pass one to me. Most amusing.

The IV fluid machine

Looking a little green and ghostly.

Oli was in a fair bit of pain but was happily using his self-administrative morphine drip, which definitely helped. By about lunchtime he was able to sit out of bed and his catheter and some of his IV tubes were removed making him feel a bit more human again.


The Doctors came round again that evening and informed me that they wanted to see me sitting out of bed the next morning. Considering I literally couldn't move at this point, the thought of sitting up actually filled me with dread. I was determined to get better as soon as I could and obviously getting out of bed is vital to the healing process. So I snuggled down as best as I could that night (or should I say early evening, think it was about 6.30pm) and looked forward to the next step in my transplant journey...

17/10/08 - TX Day!

After a night of seriously restless sleep I was awoken by the nurse talking to Oli at around 7am. He was to go down to the operating theatre at around half past, but beforehand we both had to have a dose of IV antibiotics - just to prevent any infection in and immediately after the surgery. Oli went first and after about 3 minutes started to itch his head furiously saying it was the worst itching he'd ever endured, he then pointed out his right hand was swelling up. The nurse immediately went to fetch a doctor, meanwhile another nurse started me up on the exact same antibiotics. Sure enough my head began to itch - it felt like millions of little bugs were running over my scalp - not exactly the most pleasant feeling - and my right hand also bizarrely started to swell. The Doctor arrived and stopped the antibiotics straight away and murmured something about it being a dodgy batch....not exactly a great start to the day!


It was then time for Oli to walk the green mile to the theatre. I think although he was a little nervous I was quite a lot more so and also so overcome with what an incredible thing he was doing. I tearfully gave him a massive hug and wished him all the luck in the world, and then he was gone.

About half an hour after Oli left, my surgeon arrived at my bed and explained that he had been called to do an urgent bowel reconstruction and would we mind if the other transplant surgeon performed the operation. Of course, I said this was absolutely fine. I would have been perfectly happy with either of the surgeons as they both have fantastic reputations and are lovely people. Prof Hakim was our surgeon in the end and he's the world president of the International College of Surgeons, and the surgical director of the West London Transplant Unit - I was in the hands of a celebrity in the medical world!

What then followed was possibly the longest two hours of my life...I even actually started pacing round the ward in my gown clutching a pillow. Not a good look.

When I was finally called to go down to theatre, I was terrified. It was an incredibly surreal feeling going through the theatre doors knowing that when I next went out of them my life would be changed forever.My Mum waiting for me to come out of surgery.

A lovely anesthetist then put me to sleep - and then the next thing I remember is opening my eyes in recovery with a nurse waving a big bag of wee at me happily saying "It's working! You're peeing for England!" Hoorah! I then asked how Oli was doing and they assured me that he was absolutely fine and had gone back up to the ward. I was so relieved that the operation had been a success!

I've only had one dose of general anesthetic before and when I awoke I remember feeling terrible....really groggy and I drifted in and out of sleep for the next 24 hours. But this was completely different. It's kind of hard to explain to someone that hasn't experienced kidney failure but I'll give it a go. It was almost as if before the operation my head was kind of foggy, I couldn't concentrate on anything for long and walked round in a daze a lot of the time. Suddenly everything felt clear, everything looked brighter, more real and colours more vivid and as I discovered later on things smelt better and best of all tasted better! I also noticed straight away that it wasn't an effort to move my arms or legs anymore. All of these things I hadn't even realised weren't normal when I was on dialysis, I knew my limbs felt heavy and I remember thinking on many occasions how much easier it would be if I didn't have to 'carry' my arms around. After the operation straight away it wasn't an effort to move anymore, it just felt....easy.

Oli's Dad and my Mum chat to me as I come out of surgery.

Oli recovering after the op.


The nurse also showed me my scar whilst I was in my four hour stint in recovery. 54 staples - Impressive! My flatmate took this photo immediately after the operation. The surgeons had put tegaderm (like a sticky clingfilm) so they could monitor it for any bleeds.

I was then wheeled back up the ward and on the way I saw my anxious family, boyfriend and flatmate all waiting. I gave a little wave and then was whizzed off in to the high dependency ward in a bed next to a very sleepy Oli. As I lay in bed that night I realised just how many tubes I was hooked up to - a catheter, my tessio line (used to administer meds), an ECG machine for my heart, 3 cannulas in my hands, blood pressure cuff, oxygen nasal specs and the best thing of all my self administrative pain killers - I was given a little button to press every time I wanted more...ah how I loved that. They ended up getting rid of it when I wasn't looking the next day as I was a bit click happy. Spoilsports.

I took this myself on the evening of the transplant. Everyone remarked on how much pinker I looked straight away which was fantastic! I look a little puffy as they constantly pumped me full of fluid to getting Kasper 2 to work his hardest straight away.

I fell asleep exhausted after the most nerve wracking, scary but also absolutely amazing day of my life.