Quest for a kidney

Ahoy!

2011-05-02T20:57:00.005+01:00

A very overdue update but I completed my Level 2 and 3 last month which involved so many amazing moments I can't even begin to explain...

Highlights included climbing up the mast (see photo below taken from the top by crew mate Oli.) Not only was this ridiculously scary it was also really hard work too - I had naively presumed that I would be hoisted up there and would just get to enjoy a little ride up to the top so when I was told I actually had to put some effort in and climb it was a bit of a shock! Really need to work on my hand signals too as when I got about three quarters up and was being bounced around all over the place my lovely crew members thought that my manic waving was just over excitement meaning I wanted to go higher and not that I was signaling to get me down asap - Eek!

Anyway, highlight number 2 had to be sailing to Alderney which I have mentioned in this blog so many times (here, here and here)...my most favourite place in the world where I spent so many happy summers as a child. We munched on burgers and had a walk on one of Alderney's lovely beaches. Perfect.

Other highlights included...seeing dolphins (naturally I jumped up and down like a five year old), cooking fajitas for 16 (oh yes), star spotting in the amazing clear skies, spiking the spinnaker (essentially climbing up a rope and sitting on a pole then letting a sail the size of a tennis court down by stabbing a spike into a catch. Awesome). And of course meeting lots of lovely people (including our fab skippers and first mate - Oli, Simon and Emily), laughing till I couldn't stop, conversations under the stars, winning our first mini race against another level 2 boat, relays up and down the deck whilst attached by our safety lines, passing my Day Skipper exam (which a little help from my friends...ahem), snoozes on the sail, G&Ts every eve....I could go on....

Here's some photos.

Oo and a video of the dolphins (thankfully you can't hear my squealing from the other side of the boat)

Ps.

2011-03-21T13:03:00.002Z

If you'd like to sponsor me here is the link, any donations most gratefully received!

https://edinburghuni.workwithus.org/Fundraising/Donate.aspx?page=6456

Transplant Ambassador Project

2011-03-17T18:51:00.005Z

About a year and half ago I spotted a blog post on one of the organ donation websites that I regularly follow which featured a call out for people who had been effected by organ donation to get involved in a relay race around the world on a Clipper 68ft racing yacht. My first response was to email the organiser and transplant surgeon Professor Stephen Wigmore and say I'd do it. I have a habit of getting involved in anything and everything (this frequently gets me into trouble...) and it didn't actually dawn on me till pretty recently what a hell of a challenge I was committing too.

Fast forward 18 months, a lot of emails between Steve & I, a couple of meetings and here I am having just returned from my first weeks training for the Clipper Race which starts in a few months. I'm exhausted both mentally and physically after a week of serious training and living on the yacht itself but I'm also extremely grateful and excited to be involved.

10 of us will be taking part in the race, each person has been directly effected by transplant and the aim is to raise awareness for organ donation around the world and show what an amazing difference to one's life a transplant can make.

I will be using this blog to document my Clipper journey...for the past year I have been posting elsewhere as quite simply my life post transplant has been going so well that I haven't felt the need to write on here.

I set off for my level 2 of training next week and I can't wait. It's an amazing feeling to be able to take part in something so huge as the Clipper Round the World race, especially as only a couple of years ago there's no way I'd be able to do this...spending 3 nights a week in hospital on dialysis, battling renal bone disease, anemia and a load of other joyous presents which come alongside kidney failure...I can't even begin to to explain the difference in me and my body. Anyway, thanks for reading and here are some photos from last week...

Breathe Easy Jess

2010-01-13T11:49:00.001Z

I woke up to hear the very sad news that Jessica Wales who I photographed here and here sadly passed away last night.

A complete fighter from start to finish Jess was on the transplant list for 4 years waiting for a call to give her a double lung transplant. She was given two years to live when she first went on the list but shocked doctors by outliving their exceptations by two years.

During those four years Jess endured nine false alarms for transplant. For those of you who are reading this and aren't in the 'transplant world' this is when a donor pair of lungs is found for you, you receive a phone call that tells you to get down to the hospital straight away and prepare for transplant, your heart races, your spirits life - this could be the day your life is saved - you go through numerous tests at the hospital, sitting around for hours hardly daring to move through nervous excitment and then suddenly a Doctor takes you in to a little room and tells you that the donor organ are too damaged/you are too ill for transplant or another reason that sends you crashing down once again into dispair. This happened to Jess NINE times. How she got through this I will never know.

A couple of days after Christmas Jess received her tenth call - and this time the transplant went ahead. Her friends and family were overjoyed - what a Christmas present! Sadly the call didn't come in time for Jess, her body was too weak to withstand such huge surgery and she passed away peacefully surrounded by her family last night.

She was one in a million - a complete super star. I feel honoured to have met her and photographed her. We should all feel inspired by Jess as her sheer strength and determination was incredible.

Please sign the organ donor register to stop this happening again and again. Today three other people will have died from lack of a transplant. This has to stop. We have to do something about this.

Please take two minutes out of your day and sign up to the UK transplant donor list in honour of Jess.

Breathe easy Jess. You'll be missed. XXX

2009-12-25T00:48:00.000Z

1 year on....

2009-10-25T11:36:00.006Z

Last Saturday I celebrated one year post transplant! I can hardly believe it has been a year since Oli kindly donated his kidney to me...I also never realised how ill I actually felt on dialysis until after the transplant when I began to realise how amazing it was to feel normal. I think when you're ill for a long period of time you just learn to put up with all the aliments you have and just deal with it.

I had very low blood pressure when I was on dialysis, so much so that every time I stood up I would have massive head rushes and also felt faint most of the time. Little things like that coupled with anemia, renal bone disease, fluid and food restrictions, medications, pythyroid disease and not to mention the thrice weekly trips to the hospital for 3 and half hour sessions of hemodialysis were pretty difficult to deal with at times. When I look back at those 5 years I think how on earth did I cope with it all?! But you just do I guess.

In the past year I have done so many things that I wouldn't have been able to do without my new kidney. 3 months after my transplant I produced an award winning short film which without my new found energy and health I could never have put so much time and effort in to.

I then travelled to Australia for three weeks to stay with my best friend and travelled around the west coast a bit - staying in youth hostels with the nearest city being a 5 hour drive could never have been achieved without a kidney transplant. I also went on holiday to Alderney, which is a tiny island without a hospital where I spent all my childhood summers and it was heart breaking to not be able to visit when I was on hemo dialysis. I went to Palma for a week with Dan's whole family for his brother's wedding - something that would have been very difficult and stressful to do whilst on dialysis.

I have been working towards the Gifts of Life photography exhibition spending days and days travelling up and down the country to photograph people to help raise awareness for organ donation. And I am going on a driving residential course in a couple of weeks to finally do my driving test...gulp! I found it impossible to concentrate for long enough whilst learning to drive before the transplant. Dan and I are going travelling round Japan and then off to Australia early next year - these are things I dreamed of when I was on dialysis and I literally can't believe I can now do them. I'm able to pursue my photography career now too and able to travel where I want. One of the reasons that I haven't got round to writing this post sooner is because I was away in Chesterfield oop north on a 4 day photography commission which was awesome - I then went straight from Chesterfield to Leeds where I grew up and spent a couple of days with Dan staying with one of my oldest friends and revisiting all my old haunts. This would have been so difficult before the transplant and there's no way I would have had the energy to give all the shoots my all a year ago.

I probably won't be updating this blog as often now, it's great that I don't have as much to say about kidneys as I used to but rest assured I will update it when I can with any news on my health or campaigning. I will, however, be updating my photography blog very regularly with my news so do have a gander at that if you have a minute. You can find the link here.

I don't have to go to the check up clinic for 6 weeks now which is a big milestone. Renal failure will always be part of my life, a big part, and I will always campaign to get more people on the donor list to enable more people who suffer from kidney failure to feel like I do now.

Thank you to everyone who has read my blog in the past - it's been you guys that has spurred me on to continue writing it and it's been such a fantastic experience. x

Save Jess-tival!

2009-10-06T13:10:00.002+01:00

A couple of weeks ago I wrote about how ill Jess is, thankfully she has now improved a bit and has been allowed home to rest but she is still desperately awaiting that call that will change her life. I also mentioned Save Jess the twitter campaign. From what started as a tiny idea has now been developed into a full blown concert called Save Jess-tival which is happening on October 16th...less than two weeks away! It's like an episode of Challenge Annika in LLTGL Towers!

The concert is going to be raising awareness for organ donation and all profit from ticket sales is going to the charity. You can read more about it on their blog.

Natalie Imbruglia is head lining and there's comedy from Mock The Week's Ed Byrne plus loads more so it's guaranteed to be a really good night out. Tickets are limited so if you'd like one I'd advice you to get in there quickly, you buy them online here. I'll be there as a photographer so if you do buy a ticket and see a girl with shortish dark hair rushing around carrying a camera with a big lens give me a wave!

Follow the news on the Save Jess website for more information. I hope to see you guys there!

From one article to another...

2009-09-20T13:06:00.004+01:00

Two years exactly today the following article was published in my local newspaper.

At the time I had been waiting for a kidney for four years and was feeling pretty rubbish most of the time.

I'm so happy to say that this week an entirely different article came out in Look magazine

about me and my wonderful friend Oli.

Two years ago I could have never had dreamed that I would be so lucky to receive a kidney from a friend. Since my family had not matched I'd given up hope getting a living donor kidney and instead was focusing all my hopes on the UK Transplant list. Since I have lots of antibodies currently running around in my system this was looking unlikely. I can honestly say a day never goes by where I don't thank my lucky stars that I am in the position I am in now and I am no longer tied to a dialysis machine or feeling utterly crap.

The one thing that makes me sad about the 1st article is that the headline is truer than ever right now, nothing has changed. Just because I am doing well now doesn't mean that I can forget about all the others waiting out there because not enough people have considered organ donation after they've gone or spoken to their family about it. Frank Deasy's story touched the nation when it was released in the national newspapers last weekend and over 10,000 more people signed up, which is incredible. Sadly a transplant came too late for Frank and his body wasn't strong enough to cope with it. He died on the operating table a few days after his article was published.

This week, 20 year old Jessica Wales, who I wrote about here a couple of weeks ago has been admitted to hospital in a bad way. She is currently on a NIV (delivery of ventilator support) 24 hours a day and her time is seriously running out. She's been waiting for a double lung transplant for four years now and has had 7 calls, all of which tragically fell through for one reason or another. Please spread the word about organ donation or talk to your family about it this weekend - Jess doesn't deserve to die. Sign up here.

Alderney

2009-08-31T18:04:00.004+01:00

Alderney was everything I remember it being - full of long hot days lying in the sun, fish and chips by the harbour, amazing sunsets whilst munching on freshly bbq-ed sausages on the beach, quarry parties and loads and loads of fun....and best of all, dialysis free! Oli came out for the second part of the holiday and it was lovely to see him as always.

I've posted up a few photos on to my Flickr, but here are a few more...

The Breakwater avec le sea mist

Dan

Will, my little brother

Oli

Oli throwing himself off a rock, in true dare devil style. Kasper recoiled in horror.

The quarry party

Will giving me a hug after coming out of the sea...brrrr

Me and Oli, as taken by my Mum

My Mum at the Torchlight Procession

My bro and friends

back to the island...

2009-08-05T12:12:00.002+01:00

On Friday I will be climbing aboard the tiny (and rather antiquated) Aurigny plane and flying across the Channel to go to the island of Alderney.

Alderney is a teeny tiny island in the Channel Islands which holds an equally teeny tiny town, beautiful white sandy beaches and a teeny tiny harbour.. oh yes and a ton of happy and bizarre memories from spending all my child hood summers there. Let's see, there was the time where I dressed up as a beanstalk for a fancy dress competition (don't ask), the time I performed on the legendary Channel Television as Sporty Spice (my high kicks were embarrasingly pathetic), the time that Hannah and I decided to fly over for a weekend in April only to be fogged in for days with no heating or electricity (bad idea), the time where I decided to swim out to a very far away rock aged about 9 and had to be rescued (so embarrassing when you're 9 and hold a full swimming certificate) and the time that I got banned from the camp site, for life, apparently as I made too much noise. Let's hope they have forgiven me ten years on and will let me set foot on their land again. I'm sure I look pretty different than on the Wanted posters ....

Anyway, back to the point of this blog, when I first got unwell I was on a type of dialysis called PD, and not wanting to stop my kidney failure from letting me do anything I arranged for enough medical equipment to be delivered to my house in Alderney (about 50 boxes, I kid you not) for a couple of weeks holiday and then carted the machine over on the plane myself. All was well until a rather enthusiatic crew member chucked my machine off the plane causing it to stop working. Not cool.

Now if I had been in London this wouldn't have been too much of a problem. A quick phone call to the good people at Baxter and a shiny new machine is delivered within a matter of hours. When you are stuck on a tiny island that has suddenly become covered in a dense fog meaning that no planes can fly in or out it becomes a little more tricky... Luckily I could do manuel bags until the machine was finally delivered a few days later but this was giving me less than half of the dialysising that I needed so I was feeling iller by the hour.

After four days of immense stress and upset I decided that it wasn't worth going to Alderney until after I had a transplant. This was confirmed when I transferred over to hemodialysis a couple of years later meaning that it would be impossible to go to Alderney as there was no dialysis unit on the island.

SO for the first time in 3 years I am flying back to my favourite little rock to spend two weeks relaxing and catching up with old friends. Dan is flying out with me, and then Oli will be joining me for the last part of the holiday too which is super exciting as we haven't seen each other since Donor Day so it will be fab to spend some proper quality time together. It will be so amazing not to have to worry about dialysis and tubes flying out of bikinis...I can just concentrate on having masses of fun...and not getting banned from the campsite again. Ahem.

I really can't wait.

Me looking dead cool on holiday aged about 3 or 4. I'm going to have to find those cat ear glasses...

I'll be updating my photography blog with photos of my holiday and Alderney so do check it out.

kidney love

2009-08-03T15:50:00.009+01:00

Remember a while ago when I mentioned my friend Ally who had been on dialysis for years and years?

Well, I received the awesome, fantastical, amazingist news that she had had THE call on Friday night and the kidney transplant went ahead shortly afterwards. The kidney is pumping away brilliantly and when I popped into see her yesterday (laden with trashy magazines and Ribena, naturally) she looked amazing - and happier than I think I'd ever seen her before.

Aw, kidney love.

This is what happens when you Google 'kidney love' in search of a nice image to go with a post. You get a kidney wearing high heeled shoes and a hat. I'm all for smiling happy kidneys but this is definitely sitting on the edge of creepy in my mind!

It's like that and that's the way it is...

2009-07-10T11:12:00.008+01:00

It's National Transplant Awareness Week this week.

Rather than give you a load of statistics I thought I'd write a few quotes down from an interview with a girl that sadly lost her sister, Vicky, but made the brave decision to donate her sister's organs to help other people.

I had a meeting with the head of donor transplant co-ordinators (DTCs) recently as I wanted to find out for myself what the truths and myths of organ donation were. It's difficult to know what to believe what with all the misconceptions flying around. The quotes below are from an article which is the first thing that I've read that seems to be completely factually correct - everything matches up to what the DTC told me and the girl's story is told in a very sensitive way.

So if you are worried about what happens after you're gone and you have decided to donate you organs hopefully this will clear a few things up for you -

'The hospital put my sister and us first every step of the way and our hands were held by the transplant coordinator who explained everything. That process made my Mum realise that organ donation is not just about the organs and the recipients - the donor and donor's family is prioritised. That's very comforting because a lot of people worry, like Mum did, that as soon as the person dies they become like a piece of meat, That's not the case. When they removed Vicky's organs they said they would treat her like a live patient - she was totally respected and was sewn up beautifully. You couldn't tell. The only difference was that she had a flatter stomach - which she would have been very happy about!'

'When I first heard about the accident I'd had this hope that Vicky would be okay and I clung onto that with all my might, but that was taken away from me when I heard how severe her injuries were. But all of a sudden my family and I could cling onto hope for this child and six other people who received Vicky's organs.'

'I was told Vicky's liver had been split into two sections. The larger part had gone to a middle aged woman and the smaller part to a child with chronic liver failure who only had days to live.'

'… it gave us incredible solace to know that not everything of Vicky had gone - her heart, her liver, her lungs, her intestines, her kidneys and her pancreas were helping other people. She was also a tissue donor which is just as important, because while organ donation saves lives, tissue transforms them.'

'It's so comforting knowing that she has helped save the lives of others - I am so proud of her.'

'And it's not only the recipients but also their families who are helped. My Dad pointed out that although we've lost Vicky, we had 23 fantastic years with her. People who are awaiting organs have often been waiting for years. For them and their families it must be like serving a life sentence because they are constantly wondering whether an organ is going to be available and whether they are going to take a turn for the worse before it happens. So while, for a moment, we lost all hope when Vicky died, we were given it all back when we knew her organs were going to all those people. It gave us something to hold onto.'

'We always knew Vicky would make a difference to people, but we never realised how much of a difference. We are incredibly proud of her.'

[Source : Easy Living magazine]

Last night I received the good news that 1 year old Gabrisya had received the heart that she had been waiting all her life for. It's still early days but the donor's family made an amazingly brave decision which has resulted in Gabrisya being given the chance to live.

Photo copyright of Sarah Milne.

If you haven't already, please do sign up to the organ donor register or do it by phone on 0845 606 0400.. And talk to your families, partners, friends about it. It could make all the difference.

summer is here!

2009-06-26T16:38:00.004+01:00

The thing that I am loving most about this summer is that I can actually do things in the day AND in the evening on the SAME day! As you all no doubt know when summer comes around the social diary gets fuller and fuller with BBQs, evenings in the park, best friends coming back from Australia to visit (yes, Han, that's you), drinks after work, concerts ...I could go on. Last summer I was dialysing Monday, Wednesday and Friday nights. Tuesday and Thursday nights I was so knackered that I very rarely went out at all. This week I'll have done something fun four nights out of five as well as worked all week. I could have never managed that a year ago. Yeah sure I'll be tired tonight and probably treat myself to a nice little lie in followed by brekkie in the garden reading the papers tomorrow morning but the fact is I have so much more freedom now, it's amazing! All thanks to one very, very selfless and lovely person...

I have just written a post on my photography blog which will explain a bit about what I've been up to...but in short I've been having lots of fun, holidaying, working very hard, photographing, writing and feeling good!

Finding Sol

2009-06-20T16:47:00.007+01:00

The film I produced at the beginning of the year has been nominated for another award! Woop!

Here's a bit of info....

Film London, with support from the Mayor of London, launched the 2009 Best of Borough Film Awards in June. A competition to discover and celebrate the capital’s film-making talent of tomorrow, the BoBs is an annual prize to find the best shorts produced through the London Borough Film Fund Challenge. The films are all available to view on line and the voting for the best one has began. The awards ceremony is in July at Bafta and we stand to win £2000.

You can watch it (and vote) here. All comments appreciated!

In other news, I have just got back from a week in Majorca partly as Dan's brother had his wedding there last weekend and also as we all fancied some sun! Photos to follow soon...

pick me up...if you like

2009-05-29T21:34:00.005+01:00

Oli and I are are featured in one of the UK's most classy *ahem* magazines this week...Pick Me Up!

I must admit it took us a bit of persuading to appear in the article as I don't usually read/condone these sort of 'my twin ate my baby' magazines but after being told the number of readers this magazine has we couldn't turn it down, thinking how many people that could potentially sign up to the organ donor register after reading our story.

Anyway, our article doesn't seem to be too bad. Apart from the bit that makes me sound like I should be the winner of the Billy No Mates 2009 award...but the less said about that the better!

Anyway here's the article. Enjoy.

PS. All ok on the Kasper front. Have been out of action for a bit with some horrible food poisoning but apart from that all ok. Next week is very busy with lots of shoots for Give and Let Live. Can't wait.

essential viewing

2009-05-11T16:00:00.004+01:00

Thursday morning is the premiere of Holly's Battlefront episode including all the antics of Donor Day! It's on at 11.30am on Channel 4 - tune in, you may even get to see me and Oli lurking around somewhere!

Have updated my Give and Let Live blog with photography news so check that out too :)

Presenting...

2009-05-04T19:01:00.003+01:00

www.hollycocker.com

Thanks muchly to Dan who spoke to the computer in web language and came up with this (I'm paying him in rocky road later). It's pretty basic at the moment but I'll be adding more links to it soon and a shop. Watch this space...

Give and Let Live Photography Project

2009-05-03T09:01:00.003+01:00

Just a quick post to say I have started a new blog which you can access here for me to document my photography project. Worry not though, I will still be updating this blog on a regular basis too! Hope everybody's ok x

Gifts of Life

2009-04-24T20:39:00.003+01:00

I have been super busy with lots of projects over the past couple of weeks... most excitingly of all I have teamed up with Sarah and her 'Gifts of Life' photography project. I first heard about her great idea when I was sunning myself in Australia, and thought it was absolutely fab. She has set up a website - which you can view here - containing information on the project and a gallery which is going to be regularly updated with photos over the next few months. Sarah is going to be taking photos of those waiting for a transplant or who have received one. Having just gone through the small matter of a living kidney transplant (Hi Oli!) I have decided to base my part of the project on this.

Sarah has been beavering away and has secured an amazing gallery for the exhibition to be held at in December - The Menier Chocolate Factory. We went to visit it today - it's perfect, and will look even better once it's covered in our photos! We also had a coffee at the Tate Modern and chatted about the whole project. I came away feeling hugely inspired and raring to get going. I wrote the pitch below tonight which I am going to be posting around the internet to try and acquire subjects for the photos. So if you're reading this, and have been/going to be part of a living kidney donor transplant get in touch...and pass the word on! :)

....
As many of you may have heard Sarah Milne - photographer and Mum of William who received a life saving small bowel transplant last year is exhibiting a series of photographs entitled 'Gifts of Life'. The photographs will capture people waiting for their gifts of life or who have received their gifts.

I was diagnosed with ESRF (end stage renal failure) in 2003, and waited five long years on the transplant list for a new kidney. My amazing friend Oli came forward and donated his kidney to me in October 2008. This act of pure selflessness has literally changed my life, I have never felt better. As part of The Gift of Life exhibition I am going to be doing a series of portraits of live donors and their recipients.

My aim of the project is to capture the strong bond between a kidney recipient and live donor. This is such a special and extraordinary relationship. I want the photos to represent this relationship and the donor's heroic act and to explore the bond between donors and recipients whether it be friends, family members, altruistic, work colleagues or spouses.

It takes a very special person to donate an organ in order to save another's life. Having a strong understanding of the process of living kidney donation I am particularly interested in the donors themselves – why they made the decision that many others wouldn't even consider and the recipient – how they felt receiving the gift of life from someone they know. I want my photos to reflect this.

During my time spent with my subjects I will no doubt be swopping hospital experiences and transplant stories. I think that the fact that I will have a huge amount in common with my subjects will give the project a different outlook and help me bond with them more easily, which I hope will be reflected in the photos.

I will meet with the couple beforehand to chat and get a sense of their personalities and then decide on the set up and location of the photo. What I'd like to achieve is a picture where the viewer has a sense of who these people are and how they feel, I want to move people and inspire them.

The photos are going to be used specifically to raise awareness of organ donation, and also support and promote the charity Life Life Then Give Life. The photos are going to be exhibited at the Menier Gallery from the 14th - 19th December alongside Sarah's photos, with the plan of more exhibitions across the country. The photos will also appear on my blog and website, and I will make up a booklet for the exhibition will will contain all the photos I will have taken throughout the project.

My passion is photography. I've studied it at University of the Arts in London and been lucky enough to have been commissioned to work for various companies such as Innocent Drinks, Art In Site and Divertimenti Cookery School. You can view my photos at www.flickr.com/photos/hollycocker My own personal website is in the making!

I am looking for people to appear in these photos. I'd love to hear from anyone who has had a living donor kidney transplant, or anyone who has a living donor transplant planned for in the future. Please get in touch at hollycocker@mac.com if you are interested in being photographed or have any questions about the project

Please also get in touch if you are interested in helping out with the project or exhibition in any way. As I will need to fund the printing and framing of the photos, I will be trying to raise funds and looking for sponsorship. Sarah and I are also looking for any other venues that might be suitable to exhibit the photos. So if you can help in anyway, that would be absolutely fantastic...It's all about getting the word out about organ donation!

donor day

2009-04-11T10:57:00.004+01:00

Oli and I set out bright and early to Spittlefields Market where we set up our stall and attempted to lay out the leaflets in an artistic and eye catching fashion. By handing out the 'tea bag' flyers we seemed to grab people's attention and one by one people started to come over and sign up there and then.

It was facinating meeting all the different people who came over to our desk - some who had been meaning to sign up and had never got round to it, some who hadn't given it a second thought until seeing our desk and some who were unsure and wanted to ask questions about the whole process. I also chatted to a girl about my age who told me a good friend of hers had died last week and had donated his organs and saved a total of 6 people. She said it made his sudden death not feel like a complete waste and the fact that 6 people were now going to live gave her and his family and friends comfort. "At least something positive has come out it" she said.

At around lunchtime Holly S arrived along with her entourage from Channel 4. They filmed our desk for a while and then went to a nearby office who were also holding their own Donor Desk.

At around 4.30pm when we had signed up over 50 people there and then, we packed up and made our way over to the Donor Day drinks which was held at a private member's club in central London. It was an absolutely amazing night - I met so many wonderful people including the lovely Sarah Milne who's little boy William's life was saved by a small bowel transplant last year, Oli Barrett (Holly's mentor), Emily and Holly's families, Oli Lewington (a double lung transplant receipant) and many more who I will stay in touch with.

Holly stood up and tearfully did a inspiring speech where she thanked everyone for their hard work and also her donor and their family for changing her life.

To top the amazing day off Holly then received a phone call from the PM's health secretary who informed her that the PM had not only given her a quote of support but he'd like her to pop round for a cup of tea too! To think that the campaign had started with an idea by Holly a few months ago and now the PM was showing his support and wanted to meet her was incredible! Such an incredible end to the night. Click here to see the article.

As Holly and her mentor both said in their speeches that they want to keep going with the Gift of Life appeal. So stay tuned, it looks like this isn't the end, it's only just the beginning...

left to right - Oli, me, Emily, Maribel and Freya

donor day photocall

2009-04-09T21:32:00.007+01:00

What a week...Oli arrived at my house on Sunday evening for a big family supper and early on Monday morning we set off to Leicester Square for the Donor Day photo call, which Holly S had organised to publicise her fantastic campaign - 'The Gift Of Life'.

It was so amazing to meet everyone there, especially Holly S and Emily who I had got to know through our blogs and through our common interests (transplants!). Despite the fact we'd never met before we immediately all got on and talked non stop. I also met lots of other transplant recipients including the lovely Molly who has had a small bowel, liver and pancreas transplant and Maribel who has had two liver transplants. Channel 4 were also there, filming for the documentary they are making about Holly's campaign. Having a camera stuck in your face every time you spoke soon became a normality!

That's me in the pink tights

The photographers arrived and we posed waving the tea bag flyers about and huddling around the Donor desks. Emily ran off to try and find some celebrities to be in the photos (Leicester Square is quite celeb ridden early on a Monday morning due to quite a few radio stations being located there) and came back two minutes later with the lovely Faye Ripley from Cold Feet. Cold Feet being one of my most favourite TV dramas ever I was just a little bit star struck and had to hold back from throwing myself at her and rambling on about all the life lessons I'd learnt from Cold Feet! Anyway, she was fab and said she wholeheartedly supported the campaign and was happy to be photographed wearing the Gift of Life t-shirt.

Faye and Holly S

The first person to sign up

Oli and I wondered off for some lunch with my Mum after the goodbyes, and as we were nearing Soho my phone rang. It was Emily who informed me that Alexandra Burke (winner of the X-Factor)'s Mum, Melissa Bell, was coming down to be photographed. She is waiting for a kidney, and both her and Alexandra were very supportive of the campaign. Seeing as the photographers had gone Oli and I rushed back and took lots of photos of Melissa. She was such a lovely lady - she said she found it very moving meeting people that had had transplants and were doing so well, and living life normally again. Fingers crossed Melissa's kidney comes along soon, she deserves it.

Melissa (on the left) with everyone

Holly and Melissa

home sweet home

2009-04-04T10:14:00.005+01:00

I left the land of Oz a couple of days ago, and am now back in sunny (yes, sunny) London. Apparently Spring arrived whilst I was away.

My three weeks of relaxation, reading, exploring and spending time with my bestest friend has done me and Kasper the world of good. I feel refreshed and healthy and a lot less stressed. Yesterday I popped into the hospital for a normal check up and they were so pleased with my progress that they have allowed me to not come back for 5 weeks! Weirdly I suddenly felt like someone had snatched away my security blanket when I was told this, but the Doctor assured me that they were always there if I needed them (said security blanket was returned and I felt better.)

Me wading through the rough torrents of the ocean, photo by Han.

I have uploaded lots of photos from Australia on to my flickr account which is you can check out here. I'm getting some films developed today as well as the digital ones, so shall we adding those over the next few days too.

The next week is going to be particularly busy with various things - most importantly Oli is coming to stay! We haven't seen each other in quite a few weeks, so I am really looking forward to spending some time with him, and reuniting Kasper with his twin brother. Oli is coming down to help out with Donor Day which is on 7th April. There are going to be lots of donor desks all over the UK so do say hello if you see one.

Please feel free to post the flyer on your blog, or add it to facebook and tag lots of your friends. And of course, do sign up to the donor register if you haven't already :)

down south

2009-03-30T03:48:00.008+01:00

We've just returned from a few days 'down south' in Dunsborough. We stayed in a little youth hostel on Geographe Bay, which was one of the most stunning beaches I have ever seen. The water was so calm and clear, with lots of little fishes swimming about - and a huge sting ray too!

We spent the rest of the weekend exploring, rock climbing, reading, swimming, surfer spotting, kangaroo stalking and of course playing Block Tumbler aka Jenga...I totally need to go in to training for this game, I seem to manage to knock the tower down everytime.

Tonight we're off for a BBQ down at the river which'll be lovely. - Hannah is making home made burgers as well as her own onion relish and BBQ sauce - GBK eat your heart out! I'm going to don my dolphin spotting goggles in the hope that I see one.

Not long till I am back in London now, and luckily I have got lots to look forward to when I get back which will hopefully take the holiday blues away a bit. It's Donor Day on the 7th April which is really exciting - and Oli is coming down from Leeds for that too which is great. The film that I produced called Finding Sol is also premiering on the 9th, so that will be a nerve wracking yet exciting evening... and I've also got a few exciting projects coming up, which I am really keen to get on with...more on that soon!

Geographe Bay

Conor does a spot of break dancing on Eagle Bay

Coral!

road trip

2009-03-29T15:03:00.001+01:00

road trip, originally uploaded by Holly Cocker.

Just got back from an awesome road trip to Dunsborough, which is south of Perth. Will post a proper blog with more photos tomorrow!

"stay back!"

2009-03-25T01:09:00.001Z

stay back!, originally uploaded by Holly Cocker.

Kangaroos!!

rottness island, snorkelling and quokkas

2009-03-20T01:09:00.008Z

I'm having the most wonderful, relaxing time here. Yesterday Hannah and I got on a 30 minute ferry from Perth to the near by Rottness Island - a totally unspoiled island, which doesn't allow cars and homes beautiful white sandy beaches. The island is also the only place in the world where quokkas live. Quokkas are a mix between a kangaroo and a rat bizarrely! About the size of a cat, the hop along like a kangaroo and are really friendly. Too cute. We rented bikes and snorkelling equipment, was the perfect day.

Little Parakeet Bay on Rottness Island

Hannah, Conor and me on Cottesloe beach one evening

Little Parakeet Bay

A quokka!

happy dances!

2009-03-14T11:58:00.002Z

5 films, 3 in flight meals, 2 seats to myself and one questioning over dodgy passport photo... I have arrived!

Han and me with white chocolate ice cream, crushed up with peanut butter and Oreo cookie....mmmmm

Wellness update

2009-03-10T16:34:00.003Z

I hardly dare say anything at all when it comes to my UTI and Australia due to trying not to tempt fate! But I'll say this - Mean ol' UTI has run off leaving me feel about a million times better...Doctor's have given all clear for me to go away - (exact words from consultant "3 weeks of sun and rest will do you the world of good") so it's looking very hopeful....

Donor Day

2009-03-10T16:20:00.005Z

A friend of mine, Holly Shaw, has been working really hard on her Battlefront Campaign that I have mentioned in previous posts. She has come up with the absolutely awesome idea of holding a Donor Day on 7th April.

Here's some more info from the lovely lady herself...

What is Donor Day?

To mark World Health Day (7 April 2009), I am organising a Donor Day to raise more awareness of Organ Donation and to encourage more people across the UK to sign up to the Organ Donor Register.

Donor Desk

I am setting up a Donor Desk in a public space in London to talk to people about Organ Donation and encouraging them to be pro-active and sign up. Leaflets will be available to people who want more information about it. A laptop will be to hand so people can sign up on the spot via UK Transplant but you will still be able to sign up the ‘old fashioned’ way using the Organ Donor Registration Form.

Could you organise your own Donor Desk in a public place, health organisation or work place?

If you would like to get involved and set up your own Donor Desk all you would need is a desk, leaflets on Organ Donation, Registration leaflets/laptop and a person to man the desk!

Get involved... and get people to sign up!

If you are unable to hold your own Donor Desk but would still like to get involved you can do this without even having to leave your arm chair....Check this out....

Do get involved whether it be holding a Donor Desk or just spreading the word on Facebook.

I'm going to be helping Holly out on the day. I'll post more details about where our desks will be so do pop down and say hello if you happen to be in the area!

a short stay at club hospital

2009-03-05T17:38:00.003Z

Guess my last post must have tempted fate a bit, as only 24 hours after I wrote it I started to feel unwell and felt the signs of a UTI coming along.

I phoned my unit straight away on Monday morning explaining that I didn't feel well, and as advised I rushed down to the hospital with a urine sample. Although they usually test the urine there and then, bizarrely they told me I couldn't have the results for 24 hours so I headed home feeling a little disappointed that nothing could be done till the next day.

A few hours later I really started to feel the full effects of the infection and started to go hot and cold and experience what I now know is called a rigor. I felt really ill and when I saw I also had a rash my parents quickly drove me down to the Renal Rapid Assessment Unit at my hospital...kind of like an A & E for kidney patients...without the queues and obligatory kid with a saucepan stuck on his head. They immediately tested my urine and informed me that I did have an infection and because of the said 'rigor' and raised heart rate they asked me to stay overnight whilst they pumped me full of IV antibiotics and fluids. I was happy to oblige, desperately worried that my kidney was going to get affected too.

Unfortunately there wasn't a bed available and and so we had to endure a 5 hour wait with me lying on two chairs shaking under a coat. Not ideal, and by this point I was feeling even worse. I finally got a bed and my antibiotics at 1am and having had lots of allergic reactions to dodgy ones in the past Dan stayed with me until I had passed the point of a reaction - no swollen right hand and itchiness this time...phew.

Everyone who has ever stayed in hospital over night will know that ironically the hospital is the place where one will get the least rest. Over night I was prodded and poked and even woken up by a SHO to ask what my name was....did she not spot the bright orange folder at the end of my bed with my name on in big letters? Asking for more paracetamol proved to a problem too, the nurses lock all meds in a drawer beside the bed and it took me no less than 3 hours in the middle of the night to get someone to unlock this. (One male nurse constantly used the excuse that there was a 'cardiac crisis' and he was too busy to help...and then proceeded to loiter about in the corridors outside the ward...he's certainly off my Christmas list)

By morning, the antibiotics had kicked in a little so I did feel a bit better and was sent off for an ultrasound of my kidney to check everything was ok. Luckily Kasper appeared to have not noticed my glaringly great UTI and was happily doing his job. My creatinine was normal too, so the doctors were happy that everything was ok in that area.

Extreme borderm kicked in mid afternoon and so I volunteered (or rather the consultant persuaded me) to be a patient in a test for some final year medical students. Basically this involved me lying on the bed, without saying a word about what was wrong with me (past or present) and various students filing in and having to examine me and guess what my diagnosis was. The first guy who came in was shaking like a leave and clammily checked my pulse and then had a look at my tummy. After a little poke and prode and a lot of umming and ahhing he looked up to his superior and announced 'my conclusion is that the patient has recently undergone a appendectomy.' Now the small fact that I was on a renal unit and that this meant that I might have possibly, perhaps maybe have had a kidney transplant seemed not to enter his head. Even when the senior consultant helpfully suggested that he measure the 'mound' under my skin and describe it..."Er...about 4 fingers by 4 fingers...bean shape maybe..."
"Right yes, so what could be - er - transplanted under the skin in that area?"
Student thinks for a minute.
*ping* Light bulb in student's head flickers on.
Student strikes victorious hand in air and announces 'a kidney!'
Cue solemn slow nodding from consultant.
I must add though, that the girl that went after him was excellent and not only noticed my transplant but picked up on a lot of other things too...so perhaps there is hope for the future doctor generation!

Anyway, later on to my dismay I was told I had to stay another night....I wasn't too happy about this, knowing that this involved another night with no sleep (a champion snorer had moved in opposite me - perhaps from the same training squad as the lady I shared a room with after my transplant?) and the next day I woke up feeling even more tired and fed up. The doctors came round and told me I had to stay another night, which by this point I literally begged to be let home for some proper sleep. Shortly after they left a junior doctor scooted in with the good news that I could leave...I was in slight disbelieve at this point...how could they have changed their minds so quickly? Apparently they had had a change of heart and thought I'd actually improve quicker at home. Thank god, I couldn't put up with another day of half a cup of green mushroom soup for lunch.

I'm at home now, and feeling better than yesterday. I am praying I will still be able to go to Australia in week, but I know that my health is way more important than a holiday and there's no way I will do anything that could potentially jepardise Kasper. So I just need to rest and relax as much as I can now and hope for the best. Have an appointment with the doctor tomorrow so will see how that goes....

Going Down Under

2009-02-28T11:05:00.007Z

In my last post I forgot to mention the most exciting piece of news - in fact, the word exciting just doesn't cover it....super douper, insanely exciting may just about cover it.

I am off to Perth in Western Australia for 3 weeks... in 12 days! My best friend recently moved out there and ever since I knew she was going, I had been desperate to book flights to visit. Due to the small matter of a transplant I had to get many 'go-aheads' from various consultants, and luckily all of them said yes - resulting in an extremely happy me.

Not only am I absolutely thrilled to be going to see Hannah, I am also ecstatic to be going away without being on dialysis. The fact that I will have three long weeks to relax and do nothing but read on the beach and take photos sounds absolutely perfect...

Cottesloe Beach, nearby to where Hannah lives.

I was lucky enough to go on holiday a few times during my 5 years on dialysis. I tried not to let my kidney failure stop me from doing anything, and so in those 5 years I visited a few different countries, dialysising in each of them. Although going away is absolutely fab, it never feels quite like a proper holiday when you've got to visit the local hospital 3 times a week or plug yourself into a machine at night, and so to be going away without all this is a huge novelty! I literally can't wait.

Dialysising in Manila, Philippines. Face mask compulsory, sunglasses less so...

Strangely enough I found it a lot easier to travel once I had switched over to heamodialysis, due to the fact that I found booking into another unit in another country to be not too much of a problem. Don't get me wrong - I would always be nervous about going to another unit, I would worry constantly until I got there about all the language barriers and things that could go wrong, but luckily I never had a problem.

I found going away on PD slightly harder, but I am pretty sure this is due to bad luck as I know plenty of people who have never had a problem. Unfortunately my PD machine broke twice whilst on holiday, resulting in mad panics each time - and replacements being flown in. I also managed to forget various parts for the machine whilst travelling to Paris and remembered just as the Euro Star left the station. Oops. Luckily Baxter, the PD suppliers, have an office in central Paris...phew.

Fortunately this time all I have to remember is my array of medicines, my camera and a good book!

Ps. Quick update on Oli aka Philanthropic Pin Cushion Boy : Still doing really well and has just started going to the climbing centre in Leeds (looks far too much hard work for me), as well as being a member of a walking club and is still taking lots of lovely photos :) Click here to see them.

Not so Superman

2009-02-24T09:27:00.004Z

'Superman Syndrome' : Effectively this is where the transplant patient feels so damn good after their new kidney/heart/insert as appropirate has been popped in to their body that they literally feel as though they could take on the world.. forgetting that they are still a normal human being and will get tired and ill the same as everyone else.

In the past few weeks I have been producing a short film entitled 'Finding Sol', and it has literally taken up every second of my life during that time. I found myself working 13 days in a row, and still feeling absolutely great. It was around day 15 in a row I started to feel pretty rotton, and one morning I woke up and my eyes looked a little swollen. Alarms started to immeditately go off as as kidney patients will know swollen body parts are a sign of fluid retention. Straight away I called the hospital in a panic and explained what had happened and after downing 2 litres of water I started to feel better. The hospital weren't worried but said to make me feel better I could pop in the following morning. Worried sick that my cretinine had taken a sky high jump I could barely sit still in the waiting room. Butterflies were practicly coming out of my mouth I was that nervous.

After seeing the consultant and explaining what I had been up to in the past two weeks he looked at me with that head titled side ways wise doctor look.

"So you've been working flat out for 2 weeks, and now you feel tired?" (bored doctory voice after my 5 minute rant)

"Yes! And I'm terrified that my kidney is rejecting!!" (High squeaky panic voice)

"Er no...you're just tired. It's what normal people feel after working lots with little rest. Go home an have an early night." (wise doctory voice)

"oh...ahem...will do.." (quieter voice, less squeaky)

Needless to say an early night and a good nights sleep did the trick and I felt much better 24 hours later.

I have just returned from the 4 day shoot of Finding Sol - 4 days of 0530 - 2200 of running around, sorting out lots of problems and making sure the shoot was running smoothly. Apart from the emotional exhaustion I felt great all the way through. I even wrote off this morning in my diary so I could have a long lie in but my body insisted on waking up at 8am as normal...it's amazing how different I feel since the arrival of Kasper the kidney, I would have never been able to cope with this a year ago...I was explaining to my friend how I feel like I have a brand new body yesterday - it's not just my kidney function that has improved, all my organs, bones and muscles have too.

And for my Superman Syndrome - I have hung my cape up for now.

Wellsphere Blogger's Competition

2009-02-06T17:19:00.003Z

Thank you everyone who voted for me! It was fab to read the lovely comments that people left too - made it all the more worthwhile writing this blog.

I came 5th overall and also received the award for the best blog in my category - Kidney Failure. Woop woop! Happy skip.

You can check out the Top 100 blogs here. There are some really interesting ones so I'd recommend checking them out.

Oli's local paper -The Yorkshire Evening Post

2009-02-03T09:12:00.003Z

Full article can be read here.

the department of health meeting and peritoneal dialysis

2009-01-29T17:53:00.006Z

I attended a meeting the other day at the Department of Health (very posh building near the London Eye full of brainy doctory types doing lots of important medical research) about the changes that could be made to the pathway of peritoneal dialysis.

I have never really talked about my 3 and a half years on this type of dialysis in my blog. This is mainly as I found the whole experience to be quite formidable. This was not only due to the fact that I didn't enjoy the treatment (who does?) it was also to do with problems I had with my consultant at the time. I am aware that some people love PD, and it suits them perfectly so if you are reading this and you are about to choose this type of dialysis there are many benefits to it as well as the negetive points that I mention.

I was attending the meeting as a young patient representative and I was asked to talk through my experiences of PD with a large board room of surgeons, doctors, head nurses and said ex-consultant. *gulp*. Bearing in mind that I don't like public speaking - especially when it's not exactly about my favourite subject in the world I found the whole thing quite daunting at first. As I slowly began explaining about how it all started back in 2003 and how my journey with PD ended in 2007, I realised that everyone in the room (all these important brainy people) were actually listening to what I was saying and even taking my ideas of how to improve the system into account. I found it all quite liberating being able to talk openly about all the issues I had with PD (worry not, I will talk about these later) and actually being able to suggest changes to the system that would help people avoid how I felt at the time. Getting all this off my chest was very therapeutic - and I came away from the day no longer feeling angry at the way I was treated on PD, and instead feeling satisfied that my bad experiences will make it an easier and happier experience for patients in the future.

I guess this post will make much more sense when I actually explain about my time on PD and what actually went on - which of course I will do now...or in the next few days! Let me begin...

15 Top Tips for Kidney Patients

2009-01-24T18:18:00.002Z

1. When packing to go into hospital for a transplant there are only 3 things you'll need - a very warm dressing gown, fluffy slippers and dry shampoo (greasy helmet hair is so not in right now.) I needen't have bothered packing my whole DVD collection, ten books and the entire collection of that weeks gossip magazines. To begin with I didn't have the energy to check my phone for texts let alone read a book.

2. Alcogel is your best friend. After clinging on for dear life on the tube at rush hour, a little squirt of alcohol gel on to your hands stops the guy next to you with a stinking cold ending up destroying your immune system.

3. Avoid at all costs wearing heavy belts or jeans whilst doing the pre-dialysis weigh in. Or if you do, remember to take that in to account when working out your 'wet weight'*. I lost count of the amount of times where this slipped my mind and I would end up taking way to much fluid off and not being able to move without fainting after dialysis. Not much fun.

4. Bras are for tucking in your permacath tube. Obviously.

5. APD machines are awesome for heating up your clean underware for the next day. Toasty pants are the best.

6. Cathater bags and chair legs should avoid meeting at all costs.

7. Never ever ever leave off the 'fragile' stickers when putting your APD machine on a plane. Clearly flight attendants throw cases on to the plane without a care in the world. In my case I reckon they jumped on it for a bit of fun too. The machines are quite hard to get hold of I found, especially when stuck on an island less than 3 miles long.

8. Again on a similar note never ever ever forget the two main componets for your APD machine whilst half way to Paris on the Eurostar. Fortuantly Baxter, the medical company who supplied all my dialysis equipment, as I soon found out, have an office in central Paris. Phew.

9. Keep a careful eye on quantities of medicine you are supposed to be consuming. Taking 8 times the recommended does of Lactolose certainly cleared up my constipation...

10. Don't listen to your renal councillor if she (constantly) tells you life will never be normal again and you will never feel well again. You will get better, you will feel normal again and you will appreciate life all the more for having gone through so much. I never saw that renal counselor again.

11. Always talk to people about how you feel. After 3 years of silence I finally started to tell poeple about my illness. I can't describe how good it felt not be carrying the burden completely myself.

12. Train someone else to be able to do your APD machine for you - then put on your nicest voice and ask them ever so nicely if they could mind, kindly, setting it up for you if you are going to be home late. I lost count of the amount of times my mum did this for me when I was living at home, it was always such a relief.

13. Don't be fooled when the hospital tell you that you only need your APD machine for doing dialysis on holiday - they forgot to mention the little fact that a 5kg transformer box was coming with me too...

14. If when starting on hemodialysis you continue to have horrendous headaches and sickness afterwards, try turning the temperature down a degree on your machine. Worked wonders for me.

15. Take a crash course in Doctor-Patient lingo...here are some to get your started -

Uncomfortable = massively painful

A little sore = nasty bruise lasting a few days

Sharp scratch = get ready to be jabbed by big needle

Groggy = totally out of it

Gets a little noisy at night = you'll be sleeping next to our resident champion snorer

Your appointment is at 9am = your appointment is actually at 12.30pm

(disclaimer - please don't take some of these too literally! These are based on my experiences alone.)

*weight + amount of liquid consumed pre dialysis.

A portrait of Kasper

2009-01-11T12:30:00.000Z

I had an ultrasound the other day to make sure everything was well in the world of Kasper after the stent removal.

And here is the world's first photo of ol' Kasper himself. The bean type thing at the top is the kidney but as my boyfriend pointed out it looks more like Mary holding Baby Jesus if you look at it side on...bizarre. Even more bizarre that he noticed that! Other comparisons include a baby mouse with three paws and or a star map. All other analogies welcome!

ps. Got the results of the scan - all looks excellent apparently, blood flow is perfect!

the stent has exited the building

2009-01-05T21:09:00.007Z

Mental note - when doctors try to tell you something is going to be mildly uncomfortable this is actually a direct translation in doctor language for pretty damn painful.

I won't bore you with all the medical jargon and details but I had a small procedure done today called a cystoscopy to remove a stent (little thin hollow tube which is placed inside the ureter during the transplant to keep it open allowing the connection from Kasper to my bladder to heal.) Due the fact my body is clearly too much of a nice cosy home for little ol' stent, the said stent decided it didn't really want to leave after all and clung on with all it's might forcing the surgeon to really dig around for it. Not pleasant but was over very quickly luckily and the nurses were lovely and kind as always.

I'm back home now, and apart from feeling a little sore I'm absolutely fine. In the grand scheme of things the cystoscopy was a walk in the park and all part of the treck up the kidney shaped mountain.

nye, monopoly and 2009

2009-01-02T10:53:00.004Z

This time 5 years ago I was in intensive care in California. I remember New Years Eve, and groggily watching the clock in the ward chime midnight to open the year 2004. I kind of expected the nurses to do a little countdown and say happy new year, but apparently that doesn't happen in the ICU unit.

5 years on my New Year was filled with everything a fun NYE should be - super yummy food, fab friends... and Monopoly. I usually start the new year feeling quite nostalgic, and I expected this year to be exactly the same but more so due to the crazy few months I've just had. Strangely I didn't feel this, I just felt excited at the year ahead and ready to tackle 2009 head on. I guess I don't feel the usual ties I have felt in the past, the constant feeling that I have to be dialysised three times a week, and the constant thought that I was waiting for that call that would change my life. I just feel such a sense of freedom that I can't ever remember feeling - I can go where I want, when I want - and most importantly I can do it feeling engergised and well. There is no better feeling.

matches can be fun.

NYE

2008-12-31T10:56:00.006Z

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

2008-12-27T16:27:00.000Z

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!

2008-12-24T21:37:00.004Z

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...

2008-12-19T20:19:00.004Z

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

2008-12-17T00:01:00.000Z

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

2008-12-10T21:49:00.007Z

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

2008-12-04T21:16:00.002Z

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

2008-12-02T16:53:00.009Z

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

2008-12-01T10:04:00.003Z

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

2008-11-25T19:13:00.004Z

'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

2008-11-21T15:14:00.007Z

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

2008-11-18T10:48:00.006Z

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?

2008-11-14T18:35:00.004Z

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

2008-11-11T18:29:00.007Z

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

2008-11-10T17:24:00.006Z

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

2008-11-09T10:39:00.008Z

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.

2008-11-03T21:11:00.007Z

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

2008-11-02T14:03:00.013Z

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

2008-11-01T21:11:00.015Z

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!

2008-10-29T17:40:00.012Z

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.

1 Day Pre TX 16/10/08- Oli arrives and last dialysis!

2008-10-27T17:59:00.015Z

Oli arrived bright and early today ready for his pre transplant tests. Actually seeing Oli in the hospital with his suitcase seemed to make everything more real and I felt even more excited and almost in shock at what an amazing thing Oli was about to do...I literally couldn't quite believe or take in what was happening.
I also had my last dialysis session - but not wanting to tempt fate and say a 'tearful' goodbye to my blood sucking friend I tried to keep it as low key as possible but when seven of my family and friends turned up and crammed in to the tiny room that didn't exactly happen! So whilst I munched on a supper of 'renal' chips and chicken nuggets which tasted like damp pieces of rubber (mmmm) everyone chatted and oooed and ahhhed at the machine that has been keeping me alive for the past 5 years.

Next up Oli had a cannula inserted by a rather enthusiastic Junior Doctor who decided to put it in the crease of his arm and not in to his hand. So poor Oli had to sleep with his arm outstretched whilst a little machine pumped him full of fluid ready for the op the next morning.

We also had visits from the surgeon and his assistant, who drew a bit of a comedy arrow on Oli pointing to the kidney....just in case someone tried to remove his arm instead, I guess.

The surgeon's assistant put my mind at ease a little bit when he described the operation as 'low risk' as Oli is a 'good match'. No one had ever said these words to me - I actually had no idea that he was as good match as he was. Makes it even more of a miracle really as in the 5 years I have been waiting for a kidney on the UK Transplant list only 3 'good matches' have come up, and I have been about 350th in the queue for it. (UK Transplant after my 'dress rehearsal' a few months ago were kind enough to give me these figures.)

Another restless sleep followed with a doctor waking me up at 4am to tell me my potassium was high before dialysis that day (thanks, that’s what dialysis is for, isn’t it?). We were only hours away from the big TX…

2 Days Pre TX - 15/10/08- waiting, waiting and more waiting

2008-10-26T12:46:00.008Z

So here comes a series of blogs which are going to explain what exactly went on between the four walls of Hammersmith Hospital in the week I was there... enjoy!

I can't say anything profound about the first day in the hospital, apart from that there was a lot of waiting. Waiting for a bed, waiting for tests, waiting for Oli to arrive and waiting for the actual operation itself!

I'd forgotton all about the joyous little ways of how hospitals work -blood tests at 3am, weigh in at 6am and various other little visits in the night coupled with my extreme nervousness and utter excitement did not provide a good nights sleep...

home james

2008-10-23T16:18:00.003+01:00

Another super-speedy post just to say that I am home from the hospital and everything is still going swimmingly. Kasper is behaving beautifully and is a true pro at his new job. Oli, although a little sore, is also at home with me recovering nicely.

I will post a proper account of everything that has actually gone on in the past week as soon as I can...my head is swimming with thoughts at the moment and it all seems a little hard just to condense in to a few little paragraphs. (So be prepared for some serious rambling...) Oh and I also took a shed load of photos, as did my Dad and Oli so those will be going up soon too. Until then!

Phew

2008-10-20T21:28:00.002+01:00

Just a quick note to let you all know that the op went fantastically for me and Oli, and I'll update you all on the details very soon. Thanks very much for all your support; we both really appreciate it.

The big switch is looming ahead...

2008-10-09T15:45:00.007+01:00

Just a quick post to say I Heart 'I Heart Guts' even more now....click here to find out why. Gotta love Kasper.

'Final' cross match tests came through today - results were negative which is all good. Am trying to keep myself busy at all times at the moment, if I don't have anything to do for any amount of time I find myself pondering over a million 'what ifs...' but deep down I know there is no point in even thinking like this and as my dialysis buddy Terre says I should just be prepared for anything and everything.

I stole the image above from Jen's blog. Thought it was very apt!

i heart guts, innocent veg pots and 13 days to go

2008-10-04T13:47:00.014+01:00

Last weekend Oli came to stay for a weekend filled with picnics, Scrabble and a damn good steak and with him came the 2nd best present ever - meet Kasper the Kidney! Oli purchased him from my new favourite website; I Heart Guts . Check it out - all the organs a girl could ever want.

Talking of kidneys, my transplant is scheduled for 13 days time! Yep, it's not long now and I am officially majorly excited. I think in the couple of days before the operation this excitement will be soon transformed in to extreme nervousness. But for now I am busying myself as much as possible - seeing as many friends as I can and wrapping up my last couple of of weeks at work. And pondering about what DVDs to take in my transplant bound suitcase...

P.S

In other news remember I mentioned a photography project I did for innocent a while back? Well here's the finished product - out on a Veg Pot near you! Click here to see a full res version of the 'Pac Man' photo we took.

Oh and it's also Oli's birthday today - Happy Birthday Ol!

Balloons, happy dances and more gold stars

2008-09-19T11:22:00.012+01:00

I can barely write this as a) I am far too excited and b) I don’t want to jinx anything... Oli and I have been told the glorious news that we have been given the ‘final’ go ahead for the transplant! Hooray! I say ‘final’ as in my mind it won’t be final until we are being wheeled in to the operating theater but as far as the doctors are concerned it’s a go-er! Happy dances all around.

Oli and his Dad came down last week for a final day of hospital tests. It was all very slick and organized with us being whizzed from one doctory type to another. We met the surgeon who seemed to present an aura of sheer calmness which he transferred to all of us as he told us exactly what the operation would entail. Oli and I also both got the pleasure of lying down on an antiquated bed behind an old curtain whilst the surgeon had a little poke and prod and then showed us exactly where the scar would be. For me I get a little ‘hockey stick’ shaped one on the right of my tummy- it will kind of make a face when coupled with my PD scars which is definitely going to be something to show off. And Oli’s will go just under his ribs on his left side. A badge of honour.

We also met the independent adjudicator who seemed to warm to us once we produced not only photos and letters to prove we know each other but also documents with our old addresses on – to prove that we lived near each other and I didn’t just scoop Oli off the street one day offering him a fast car and a speed boat for his kidney. She then chatted to us individually (giving Oli a chance to escape if he wanted to I think!) and then answered any questions.

Oli also had an echo cardiogram in the morning, to just double check that his heart was healthy. And in true Oli style he scooped up another gold star as everything was fine.

We were told that we would get the final go ahead 48 hours later, and Oli and I skipped off into town to have some post hospital fun…

Here's Oli looking serious in an art installation at an exhibition we went to in Soho.

And me looking not so serious, outside Hamleys.

I honestly can’t believe it, I know as time passes my excitement and nervousness will triple by the day – and Oli seems to feel the same. Everyone seems utterly thrilled but a little nervous and almost not daring to talk about it, but a wise soul once told me that thinking positive thoughts can make a big difference in how things pan out, so that’s exactly what I’m going to do…

fish heads and flip flops part 2 - long overdue!

2008-09-19T11:22:00.003+01:00

I received a message from someone this morning asking what happened with the whole Philippines saga. I realised that I didn't really explain what the actual outcome was...so here it is... better late than never!

When I returned home from the Philippines I knew I had to make a huge decision, and I went into massive thinking mode and spoke to everyone I knew, gathering together the pros and cons of having a transplant in the Philippines. I swung from a definite yes to a definite no really quickly and then back again with everything that I'd seen and heard on my trip swimming around in my head. I even saw my consultant who although couldn't advise me to go, didn't tell me not to so I began to think it would be a good idea.

I was absolutely terrified if I'm honest, but at the time I didn't really see I had a choice. Fed up of waiting on the transplant list I decided I should go ahead with the operation in the Philippines. I was aware that there was a monatorium going on, preventing foreigners from having kidney transplants in the Philippines - I'd been told this when I was out there - but that it was very temporary - and that normal practice would start again in two weeks.

I emailed the company in the Philippines telling them that I wanted to go ahead with the transplant and oddly I didn't get an instant reply from them, which I always had done in the past. I waited a few days and then did a bit of googling about the monatorium, and to my surprise I saw that a total permanent ban had been put on all foreign transplants and the company that I had been dealing with had been closed down. So it looked like the decision had been made for me...I was slightly disappointed at first, but soon realised that this obviously was meant to be and that I wasn't supposed to go. Six months on I can see that it was definitely for the best, especially since all that has happened with Oli....more on that later....

Philanthropic Pin Cushion Boy dons his kidney shaped cape and flies off to the next level

2008-08-29T15:45:00.011+01:00

Hooray - Oli and I have managed to climb to the next stage in this big kidney shaped mountain that we are currently scrambling up!

Oli received a gold star in all his tests, and so we have been asked to come back in and meet another doctor for a further medical review (in a couple of weeks) and have a discussion about the actual transplant... oh and also we get to meet the surgeon..*gulp*

We then have to meet up with an Independent Assessor to prove that I am not some crazed lunatic who has bribed some poor sod - Oli - to give up his kidney...the dodgy photos I can produce of us both from when I was 14 should hopefully show that this isn't the case...

Three mutual friends also have to write statements outlining how long we've known each other - again to prove that there is no funny business going on.

I hardly talk about the operation, to anyone, in fear of jinxing things and it somehow not happening. I keep reminding myself that at any moment this could all disappear in a puff of smoke due to some complication that could arise and if that was the case I wouldn't be any worse of than I am now and Oli will have done everything he can to help me. I guess I am protecting myself from more disappointment but the closer we get to the goal the more I have to remind myself that I might actually have to allow myself to believe that this might happen at some point and think about what to pack in my hospital bound suitcase...

5 a day

2008-08-26T19:44:00.005+01:00

Still no news on the Philanthropic Pin Cushion Boy saga. Am hoping for some gaps to be filled in by the end of this week. (The Doctor with the stethoscope full of answers is currently on a well deserved holiday.)

But in the meantime, with the help of a special someone, I have been taking some rather cheery photos of some very fetching vegetables for an upcoming project.

Click here to see them.

The Waiting Game

2008-08-19T19:43:00.000+01:00

Oli and I are currently still playing The Waiting Game.

Waiting is a bit of a meanie. It purposely slows down time, making what ever you are waiting for come slower. It consumes pretty much everything you do and takes over your head making the wait drag on even longer. And if for a second you happily forget what you are waiting for, The Wait Monster pops right back in to your head as if just to scream ‘Don’t forget about me! I’m still here!’

Throughout regular intervals during the day I find myself glancing at my phone willing it to ring and be either Oli or Alex on the other end with some good news. I can’t say that this new little hobby of mine is proving to be particularly successful…

Anyway I’ve managed to wait for four and a half years so I’m sure a few more days won’t hurt….

Philanthropic Pin Cushion Boy

2008-08-09T15:45:00.002+01:00

During my time on dialysis a few friends had kindly said in passing conversation that they’d give me a kidney. My standard reaction had always been to say almost awkwardly ‘thank you, that’s really kind of you’ and then quickly change the subject. I mean how is one supposed to react when a friend casually mentions that they could give you the most amazing gift in the world, taking the indefinite sentence of dialysis away, constant tiredness and the rest of the lovely little side effects kidney failure comes with. Somehow I don’t think if I suddenly produced a large rope net, threw it over them (think Tom and Jerry cartoons) and bundled them in to an awaiting ambulance to get tested straight away it would go down very well…so I usually say, after thanking them, that the best thing for them to do is to see their GP to find out what blood type they are then take it from there.

I find that this answer puts as little pressure as possible on people and also allows them to think seriously about whether they would want to actually go ahead with donating a kidney. It’s not exactly a decision to be taken lightly and the last thing I’d want people to feel is pressure, and I usually assure people that the nature of my condition means I’m not likely to drop down dead in the next few hours so they don’t need to leg it to the GP this minute.

So, when my friend Oliver said he would like to give me a kidney, during a text conversation, I thanked him and told him he was being very kind. The next day I received a message from him asking what the next step would be in seeing if he would be compatible. I recommended he spoke to his GP but little did I know that over the next couple of days he had not only contacted his GP, but he’d spoken to the transplant co-ordinator at his local hospital about being a donor and even been on lots of forums finding out more about what is involved in the whole process.

I was taken aback to say the least and so touched that he had actually gone to the effort of doing this. After a couple of phone calls between me, my transplant co-ordinator Alex, and Oliver, it was arranged that he would send a sample of his blood down from Leeds which would be used for a crossmatch.

Crosmatching is basically a test that involves a sample of my blood and a sample of Oli’s blood going head to head in a little petri dish. My blood cells and his blood cells then check each other out and see if they want to be friends. If one of our bloods kicks off, a positive reaction is found. This means that our bloods didn’t like each other and rejection took place – so therefore no transplant would be able to happen. If a negative reaction happens the bloods sit happily together, and no reaction whatsoever takes place. This is the best scenario for a transplant.

Oli had already found out he was the blood type O Positive, which already had resulted in a little happy dance in my office car park as he told me on the phone - This is my blood type and every other person that had tried to be my donor (my Mum, Dad and older brother among them) had always been blood group A. It was like I was cursed by these damn blood group A people, even my flatmate turned out to A. So when Oli rang me rather excitedly a few days after he sent his blood down and informed me that the crossmatch was completely negative I was speechless, more happy dances were to be had.

Despite being pleased with Oli’s news, I did not want to get my hopes up as there have been a fair few kidney related disappointments over the past year so I tried not to think about what the outcome could be. I was also completely prepared that Oli may change his mind and I assured him that this would be ok if he did. Alex then arranged for Oli to come down to my hospital in London a few days ago for two days of intense testing (cue Oli the pin cushion) and a lot of chatting about what exactly is involved….

Click here to read about Oli’s experiences.

the ex-hypochondriac on route to the OC - Part 3

2008-08-09T13:25:00.001+01:00

Instead of telling the airline about my illness and running the risk of them bumping me off onto a fight at a later date because of it, it was decided that I should take a lovely concoction of drugs to ‘almost’ sedate me and fly back on the date that we’d planned.

I wasn’t particularly aware of what kind of medicine they gave me on the morning I was to fly back, nor did I really care at the time. But imagine having a super power where you could close your eyes in one place, and then open them and you were in a totally different place. Bit like apparating in Harry Potter. Well it was pretty much like that, one minute a nice American nurse was asking me so swallow a few pills, and the next I am sitting in A & E in Charing Cross Hospital. I kid you not.

I realise I had not magically transported myself from one place to the other, but for the life of me I couldn't remember a thing, those pills obviously did their job and put me into a mega deep sleep.

A few weeks later, when I was feeling much better, my family decided to fill me in on what really happened.

Being very ill and bedridden for the past few days I was extremely weak so at the airport my parents borrowed a wheel chair and wheeled me around in it. I somehow don’t think walking would have been advised anyway, not with the amount of sedation medicine I had just been given. Introductions might have gone something like 'face meet floor, floor meet face.'

After being wheeled through security, having been as quiet as a mouse for the last 5 hours as I was dosed up to the eyeballs, I jumped out of the chair, tipped my purse upside down sending coins and notes flying and screamed "I don't want this Monopoly money, TAKE IT AWAY!"

My parents were shocked to say the least and god knows what everyone in the airport thought of me. The money was hurriedly scooped back into my purse by my flustered parents while I had returned to my chair. A quick tour round the shops was to be our next activity as it was hoped that might take my mind off the dreaded Monopoly money.

Unfortunately for everyone in the airport it wasn't long before I had another slightly mental alteration, even more bizarre than the first...

Three Thousand Words

2008-07-19T19:40:00.008+01:00

Here are a few photos that my boyfriend and I took last night at dialysis.

Below is the main strech of the unit. That's my machine on the right. This photo was taken quite late at night so there are very few people left in the unit.

The next photo shows the dialyser on the right of the photo. This effectively is my subsitute kidney, and is the main component of the machine.

The last photo is another part of my dialysis machine. The tube on the left of the picture is actually an air trap and prevents bubbles from going in to my line and into my body. Clever little thing really. If air does get past these traps an internal machine air sensor shuts down the blood pump and an alarm will sound.

Oh and that's me in the backgrond pretenting to be engrossed in something in the distance.

Hope these photos gives a little insight in to my thrice weekly trips down to the hospital!

almost but not quite

2008-06-30T14:59:00.002+01:00

Two Fridays ago at 7.38am my phone rang. Sleepily I answered it wondering who it could be at this hour. When a cheery voice announced that it was a representative from UK Transplant I didn’t even click, thinking it was probably about something to do with a press article they wanted me to do, which has been the sole reason that they have called me in the past. So when the voice happily said that a matching kidney had been found I literally was speechless and couldn’t even string a sentence together to the poor guy on the other end of the phone. I literally can’t explain the feelings and emotion that flooded through my body at this moment in time, I have never felt anything like it. Completely elated at the news, but unable to let it properly sink in I calmly walked through my flat to the bathroom where my house mate was getting ready to go to work.

In my best ‘trying to stay calm voice’ I told my housemate the news. She promptly burst in to floods of tears and hugged me, but then quickly switched in to major organisational mode and called a taxi to the hospital whilst I stood in the sitting room unable to move with a million thoughts going through my head…not only about the operation ahead but also about the amazing person that made the decision to donate their organs when they had died, and the incredible family that honoured his decision even though they would be hurting so much at this point.

A few phone calls later and my mum was also on the way to the hospital where I was met by a Doctor who took my bloods and explained that they had to measure my anti bodies to check that my body wouldn’t reject the kidney. The test results take four hours to come through...meanwhile I was to have an ECG, and echo test (both examine the heart), a chest x-ray and also an emergency session of dialysis. I was told that in order to go ahead with the transplant I would have to clear each one of these tests. Being in complete shock I didn’t want to let my myself believe that I would have the transplant until it was a 100% certain as I knew how much of a let down it would be if it didn’t go ahead.

I had thought about this day almost every day since I was diagnosed with kidney failure four and a half years ago, and I always thought I would be quite excited and calm about the whole thing. But I wasn’t at all, in fact I was the complete opposite and cried with happiness and nerves for most of the morning. I was in an absolute state of shock, having had resigned to the fact that I could be waiting many more years for my kidney.

It wasn’t until the Doctor returned telling me that the blood tests were all good and the operation was to go ahead, that I let myself believe that I was to have my transplant and family and friends started rallying around.

It was at this point that everything slowed down a bit, I stopped being rushed round the hospital from test to test and instead was left to wait in a tiny corridor at the end of a ward. When a nurse came to get me, requesting I brought my ‘next of kin’ with me and asked me to wait in a little room I knew that something wasn’t right. The five minute wait until the Doctor came in felt like time had slowed down – it was agony. When he eventually came in I knew straight away from the look on his face that the transplant wasn’t going to go ahead. I couldn’t tell you exactly what he said as from the second he said ‘I’m so sorry…’ I didn’t hear anything else and collapsed in floods of tears, in complete despair that I had come so close and for the first time in 4 and a half years I had let myself think about life without dialysis and how amazing it would be.

Apparently when the surgical team had had a proper look at the kidney they decided that it wasn’t good enough to given to me, as there was a chance it could fail as the artieries weren’t as strong as they should be.

I was absolutely overwhelmed at how supportive those close to me were, and how understanding everyone was at the sadness and disappointment I felt. But as I went home that night I had to remind myself that although I was mourning for a kidney I never had, there was a family out there mourning for a young person who they had lost, and obviously that doesn’t even compare to what I went through.

the ex-hypochondriac on route to the OC - Part 2

2008-04-16T15:44:00.003+01:00

Firstly, apologies for being a bit rubbish about posting. I have been rather manic and unable to post due to Blogger blocking my account...no idea why! Anyway expect a number of posts this week updating everything...and I promise to post more regularly!

And secondly here is the next part of what happened to me when I was diagnosed with End Stage Renal Failure in California..enjoy!

God knows what my poor Grandparents thought as I stepped of the plane in to the hazy Californian sun. Face so puffy with fluid I could have easily been mistaken for a giant marshmellow I wheezed a ‘hello’ before collapsing in to bed to recover for a couple of days. Jet lag added to my tiredness, but having just arrived in California (and it being Christmas, the spirit of…Christmassy things) I forced myself to join in with my families activities. As every step got harder and as every hour went by and I felt worse and worse it slowly dawned on me that things weren’t going to get better.

Although I was literally drowning in my own fluid, that didn’t stop me being the thirstiest person in America at this point. Those who’ve been to America (or for that matter have seen the film Super Size Me) will know that over there (like everything) they have huge jumbo size juice cartons, so big you have to use two hands to pick them up and pour. Anyway, I was guzzling these by the gallon..which is odd, since I was so fluid over-dosed at the point. I would have thought what with the body being such a marvel something would have told me to stop drinking, or at least stopped my thirst…but nooooo there goes another liter of Welch’s grape juice down me. Although having too much fluid is unpleasant (for a kidney patient), it’s really the effects of the juice, sorry fluid, that actually has on a person that is the danger not the fluid itself.

Fluid is a devious little monster, it will find anywhere and everywhere to store itself. Face and ankles are a particular favourite with me, but I think it differs with everyone. If a person is particularly overloaded when they walk around fluid descends itself down through their legs, and then usually snuggles up in their ankles making wearing skimpy shoes a big no-no. Not being a big skimpy shoe wearer myself I would much rather that than my bodies favourite place for fluid to collect – which is my face. After a particularly fluidy day I will wake up looking like I’ve been punched in the night…not a good look. God knows why said fluid feels it must surprise me like this in the morning, but seeing a big moon face in the mirror when you wake up isn’t exactly what you want on a Monday morning…anyway, I think I may have gone totally off the point..as I said, fluid can hide itself everywhere, and you would have to drink a lot more than 2 and a half litres (which is what will start the puffiness off in me) for it to actually cause any real damage. However, fluid does cause high blood pressure as the fluid puts pressure on to your heart. Another thing that kidneys do is break down and get rid of potassium. Potassium is in so many things…bananas, strawberries, oranges, tomatoes and even…sigh…chocolate. So there I was in America, at Christmas, stuffing myself with all these chocolate santas and banana ‘shakes not knowing that the potassium in my blood was shooting up to dangerous levels.

I fell asleep (as usual) on a car journey to a local mall, and telling my parents to go ahead without me I stayed asleep on the back seat. A few minutes later I heard a tap on the window and my Mum informed me that there was a free ‘blood pressure tester’ in side the Supermarket there. I wandered in and stuck my arm in the machine. Not knowing that beforehand my whole family had checked there own blood pressure and it being hugely lower than mine I couldn’t understand why they all looked so worried when mine came up as 227/180. They insisted that I took it again. And again. And then even the Pharmacist was called over who informed me that I should get to the ‘ER’ immediately.

After that I wasted no time, but was still quite relaxed about the whole thing. I expected a four hour wait, then a check up and some antibiotics. I had no idea what was about to come. My breathing was increasingly bad by this point so when my Mum mentioned this little fact to the receptionist at the casualty department I was rushed straight through (skipping the queue – woop!) to a Doctor who took my blood pressure again and confirmed that it was dangerously high. Giving me a very small dose of a blood pressure lowerer medication, he then went on to tell me he thought I could have a thyroid problem but I ought to go to the main hospital just in case.

Expecting to jump straight back in to my Grandma’s car, I was a little shocked when they bundled me in to an ambulance, insisting that I had to be strapped to a stretcher. I found this all a little humiliating and insisted I was perfectly capable of walking. They appeared not to hear me, and whacked the ambulance siren on as they sped through the streets of California with my Mum and Grandma following in a car close behind.

When I reached the hospital I was carried through the ER department still strapped to the stretcher (I was not amused) and fast tracked to see a Doctor straight away. A lot of blood was taken, a lot of prodding was done and a lot of machines were attached to me until finally they announced they had a bed for me. Pushing me through the corridors of the hospital on the bed (I still didn’t understand why they insisted I lay down) and I began to get increasingly worried as more and more signs to ‘Intensive Care This Way’ appeared. Clearly alarmed I started to question the nurses who were pushing me towards this, they must have made a mistake –I’m not that ill! All pleas were ignored and I found myself in a huge unit surrounded by lots of alien looking machines.

After being introduced to my nice nurse, a young J-Lo look-a-like who found my accent to be very amusing and after every word (or whimper) muttered by me, rather embarrassingly she would respond by aww-ing and coo-ing. There was also the small matter of the language barrier...

Me (to J-Lo) : I feel really sick!
Nurse J-Lo : Aww, I know honey - you're really sick.
Me: No, no I feel sick!
Nurse J-Lo : *pats my head* Sweetie, I know.
Me: Nooo. I mean I'm going to be...*bleugh*

Anyway after lots of tests and the doctors ruling out that there was anything wrong with my thyroid (their first assumption) they came to the conclusion that it might be my kidneys playing up. So I was sent down to have an ultra sound where the nurse spread a load of very cold jelly on my back and then pressed a large torch like piece of equipment and had a look at what was going on in there. She didn’t seem to have a problem with my right side, but when it came to the left she kept on repeating the same movement obviously double and triple checking what she was seeing. After doing this for a while she announced in her most trying to be calm voice ‘I’m just going to get someone else to take a look at this..’ Anyone that has been in a hospital for more than 5 minutes will know that whenever another opinion is needed, it’s normally not good news.

After the ultrasound I was sent down for an MRI scan, I had never had one of these before and so wasn’t aware that you are shoved in to a massive tube, head first, strapped in so you literally can’t move (claustrophobics beware) and then once the machine has been turned on the noise can only be described as a mixture of really loud bad drum and bass music and an industrial washing machine. It was so loud. Being rather ill and drugged up though, I promptly fell asleep. Apparently I was the first person they had ever known to do this! Score.

After a couple of days the doctors realised that the source of the problem was in fact my kidneys and a rather brisk and straight talking doctor came down to break the news to me and my very worried parents. The doctor had obviously never been trained in having a good bedside manner as he announced without any thought to how I’d feel that my life was pretty much over, I’d never be able to behave like a normal twenty something and I had a life of medical procedures and dialysis ahead of me. Everyone looked distraught in the room, I noticed J-Lo even had tears in her eyes. Weirdly enough I wasn’t that panicked, I was simply relieved that they had diagnosed something wrong with me and that I could finally begin the journey of getting better.

...Part 3 soon, promise!

fish heads and flip flops

2008-03-11T14:56:00.008Z

Ok so I totally should have listened a bit more when people warned me of what a ‘crazy’ city Manila is. That’s a total understatement. It appears that the Filipinos do not understand what an indicator is on a car, and so weave through lanes like there’s no tomorrow, honking madly as they do this. There’s also no seat belts so my Mum and I have been clinging on for dear life in the back. On the brightside a half an hour taxi ride is about 60p..which I can’t really complain about!

Manila is a huge city made up mainly of high rise towers and shanty towns, it’s also in a massive hazy, smoggy cloud which takes a while to get used to. Many people walk around with surgical masks here to stop them breathing in the dust. It’s summer here too which means it’s about mid thirties during the day, which is only bearable if there is a light breeze and a near by swimming pool to quickly jump in to.

Anyway, the flight over was absolutely fine - I cannot complain about Cathay Pacific at all ...selection of TV, music and films was awesome, watched 3 new movies and liked them all, and then lots of telly including a very educational documentry entitled 'Victoria Beckham comes to America'. Remind me to punch her in the back of the head if I ever see her.

Kidney wise, I think I underestimated how much work and meetings I would have to do here to actually find out a decent amount on transplants to give me enough information to make the hugest decision I will probably ever make which is whether to have the op abroad. Today I had a meeting with a doctor who I have been emailing off and on for about a year now, so it was really great to finally meet him. Was pretty amusing though as in all the time we had been emailing I don’t think I’d ever mentioned how old I was so he was pretty shocked when a 23 year old turned up and not ‘a frail old English woman’ like he had expected! He explained to me a lot about the processes people go through to have a transplant here, which shed a lot of light on things I was uncertain about. On the whole it gave me a lot to think about.

I had dialysis last night at the ‘local’ hospital (which is actually a 20 minute taxi ride away) and that was ok. I needn’t have worried about the cleanliness of it, and the nurses and hospital was super hygienic. I was obviously a bit of a novelty in the hospital as they insisted I had my own room, and even wheeled in a TV with loads of English DVDs for me. Nurses and Doctors also kept popping in all asking the obvious question..’so m’am why are you here?’, and not wanting to cause a national scandal I opted for mumbling something about seeing the nice sites in Manila…now seeing that there aren’t really any nice sites in Manila, I don’t think this was the most believable answer! So I got a lot of knowing looks, and even a wink from one nurse. So I’m thinking they may know the real reason why I am here! The actual dialysis was fine though, apart from they took some blood from me earlier in the day for tests and I swear the needles here are reminisant of straws. Ouch.

Anyway tomorrow I am going to the National Kidney and Transplant Institute and then on Thursday we are flying out to an island called Cebu, to meet another kidney transplant organiser company. Until then here are a few snaps I took today…

flip flop?

the youngest shop keeper in manila does a bit of DIY on her stall.

the manila bay sunset

lunch...eek!

my mum and the biggest ice cream sundae ever

jeepneys - hold on for your life. (note ironic sign 'fasten your seatbelt' - I would if the cars ever had them!)

Planes, trains and automobiles

2008-03-07T20:49:00.000Z

Will finish story below soon I promise but just thought I would quickly come on here to let you know that I am off to the Philippines tomorrow to do a bit of kidney related research. Have been in talks with Doctors over there for a while now and booked a ticket last week to fly over and check out the hospitals. Back in a week. I’ll keep you posted…

the ex-hypochondriac on route to the OC

2008-02-25T14:20:00.002Z

From the age of about 10 I was a complete hypochondriac. I was one of those kids that couldn’t sit though an episode of ER or Casualty without self-diagnosing themselves with at least three terminal diseases. This was fuelled by nurses coming to my school and explaining the dangers and symptoms of meningitis which obviously put the fear of God in to me and prompted me from then onwards to test every little rash with the ‘rubbing a glass over it’ test and checking out every ache and pain in my handy ‘How to spot meningitis’ leaflet I was so attached to.

Luckily (or perhaps unluckily?) my hypochondriac-ness wore off by the time I was about 17, which is ironically when my symptoms really started to kick in from the old kidney failure. Anyway, before saying any more on that I probably should just start at the very beginning…(this’ll have to told in a few parts I think…)

I was in my last year of school in London completing my A-Levels. (Cue filmic whoosing sounds as we zoom back in time...) Days were spent attempting to complete the Heat magazine crossword every Tuesday and devising new and exciting ways to entertain ourselves in out ‘study’ periods. Favourites included obstacle courses (which involved diving through a hatch in the kitchen), setting up tent competitions and who-can-keep-a-polo-in-their-mouth-the-longest contest. Then, of course, there was the occasional Shakespeare essay thrown in.

Whilst tucking in to a cheesy baked potato one day (my staple school lunch diet for two years) I noticed that my hand was trembling as I ate. Thinking I must be worried or nervous about something I brushed it aside, but as the trembling carried on day after day and got steadily worse I began to get a bit puzzled. Now at this point most normal person would probably take a swift visit to their doctor, but being 18 and far too stubborn to admit that there was actually something wrong with me I decided to leave it. Mistake numero uno. Needless to say I now embrace the doctor with open arms when I discover any unwelcome ailments in my body.

Looking back now it seems blindingly obvious that there was something quite wrong with me, but I guess it’s all very well to look back in hindsight. As well as quite bad nose bleeds (which coincidently my Mum endured when she was about my age so I put that down to being hereditary), I also felt like I was in a massive daze all the time, and not really myself. This is backed up by my parents and friends shocked faces when I announced instead of doing something a bit creative at university, as everyone expected, I decided I was going to become a primary school teacher Cue gasps from all those around me. Not only was I not exactly the child loving type, the thought of being in a school all day with little horrors running rings me makes me feel quite nauseous now.. hats off to all those teachers that manage it every day. So I'm not exactly sure what I was thinking at the time, quite out of character to say the least.

Anyway, fast forward to December 2004, where I am living in a box in the halls of residence at a university in London. Having had a very unproductive term with bizarrely many things going wrong - all pointing me in the direction of not completing the teaching degree..such as not getting a placement in a school (the university forgot to find one for me, apparently), being put in the wrong class with people twice my age, and being given a prison cell for a room...was almost like someone was trying to tell me something! I had began to feel worse and worse, but putting this all down to the rather full on Fresher's week I had endured, and then the obligatory Fresher's Flu..I brushed aside any thoughts that it could be something serious.

Towards the end of term even getting out of bed became an effort, I would spend days in bed sleeping for eighteen to even twenty hours a day and still feeling exhausted. The only thing that really kept me going was an upcoming family trip to California for Christmas that year to go and visit my Grandparents. I was desperate to be well for this, so at the time all the sleeping I was doing appeared to be somehow productive in my eyes. A few days before we jetted off I decided I had enough of the university lifestyle and decided to end my very short teaching career. (Definitely a smart move!)

The night before leaving for the U S of A, I thought that I must have a chest infection as my chest felt increasingly tight. Now I know that this was actually fluid on my lungs...writing this I feel alarmed at the fact that despite not really being able to breathe properly I got on a nine hour flight. I just about survived the first flight to our stop over point, with only a couple of nose bleeds but by the time we touched down at Dallas airport I had to began to feel even worse with a rash all over my body which was creating big swellings which were popping with fluid, looking a bit like bubble wrap…surprisingly satisfying to pop...but also very worrying. Now I know this was because my kidneys were shutting down and my body didn't know what to do with all the extra fluid so the only way it could expel it was by pushing it out my skin. Not pretty…but amazing the way the body works.

Anyway I’ll leave you with that little snippet to start with and next time I will tell the exciting tale of what happened when I actually arrived in California…

The Vampire Shift

2008-01-23T12:15:00.000Z

In what's known as 'The Vampire Shift' at my hospital, I dialyse late at night three times a week. Apart from the fact that vampires only come out at night (or so I've heard) the other reason that the shift is named after our sharp toothed friends is that in simple terms the function of a dialysis machine is to whip out my blood (slowly, mind) through a small tube in my chest (one of the bains of my life, the other being a certain Playstation 2 game) and put it through a fluid called dialysate which helps remove all the nasty stuff from my blood which my un-cooperative kidneys cannot do. It also helps get my electrolytes and minerals to their proper levels in my body.

I weigh myself when I get to the hospital so my nurse (Dilsha - who never fails to tire me with her great stories) can program the dialysis machine and tell it how much fluid to take off me. This is usually fool proof, but occasionally I will be wearing a particularly heavy pair of jeans which can throw the whole system and leave me departing the hospital feeling very faint and weak...cue downing loads of water to replace lost fluids.

I can usually while away the hours watching a good film, frustrating myself by playing a near impossible game on my Nintendo DS or chatting to a certain someone which definitely makes time go faster. Sleeping is usually out of the question due to the amount of dramas and noise going on around me but I try to drop off when I can. When the machine gets agitated or I lean on my line it plays a series of alarms to call a nurse over to sort it out (one weirdly sounds like the first few bars of Happy Birthday as my boyfriend likes to point out) and then when the three and half hours are up and I am feeling a great deal thinner it plays a little happy tune and I can be taken off the machine and allowed home.

There are only two other people who dialysis at the same time as me. A wonderfully eccentric French lady who is very entertaining with her flamboyant singing and her huge crush on one of the male nurses, and a taxi driver who is much quieter and spends the whole session watching loud action films. Both are in their late 40s and sadly have been waiting for a kidney for a lot longer than I have.

I have been on coming to the hospital for these late night vampire sessions (as my boss now fondly calls them) for just over a year now. And before that I spent just under 3 years on a type of dialysis called Peritoneal Dialysis which I did at home, but that is as they say, a whole different story...

A picture of my view for 11 hours a week!

kidneys..or lack thereof!

2008-01-21T10:28:00.000Z

After the massive amount of press that has been racing around the media circuit about organ donation and the proposition of whether the UK should introduce an opt out system, I am starting a blog to document my experience of being on the UK transplant waiting list and how having kidney failure is effecting me.

Obviously I am slightly biased to the fact that I would love the UK to operate an opt-out system and I do really believe this could really work and change the lives of so many people. However, as pro opt-out as I am, I am trying to see both sides to the story and understand why people may be afraid or against organ donation.

One of the main problems is getting people to actually understand the facts of how organ donation works. Journalists such as Melanie Phillips who wrote this article are clearly scaremongering people, by feeding them with facts which are not even near the truth. More on that later...

There is also definitely not enough awareness about what actually happens when one decides to donate their organs, I think this is partly to do with the fact that it is a subject that can't be discussed casually round a dinner table; it's a taboo subject and people would rather not talk about it at all. The Government have proposed to put a lot more money in to educating people on this subject which is great, and they have also proposed that there be 100 more transplant co-ordinators which would double what we have now.

Health wise I am able to hold down a full time job (with a bit of give and take) and lead a good life. Dialysis 3 times a week is hard and leaves me feeling very unwell a lot of the time, but it's got to be done and I tend not to dwell on it. At least I can actually be kept alive without my vital organs unlike people who are in need of a heart, lungs or liver.

I was also lucky enough last week, in the midst of the opt-out debate, to go on BBC breakfast news with the inspirational Debbie Stoner to talk about my experiences with kidney failure and what I think about the proposed system. I only had a few hours notice from the BBC, and managed to qualm my nerves until I was ushered in to the tiny studio, miked-up and sat on the red sofa. Luckily all went ok. Click here to watch the interview.

I was also filmed for the 10 o clock BBC news the day before, where a cameraman and interviewer came to my office and filmed me talking about my experiences. They interviewed me for roughly an hour and asked me so many things from how I saw life in the future to how I was first diagnosed. I actually came away from the interview feeling quite emotionally exhausted, I didn't really expect to feel like this but I think it made me realise actually how desperately I want a kidney transplant...Oh and for those of you who were wondering, I actually work in a production office which is why I was holding a camera - I wasn't just let lose in the BBC studio! here is the link to that news piece.

On that note, I actually better do some work, but here is a link to a sport I think we should all take up.. Much more worthwhile than football.