1 year on....

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!

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...

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

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...

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

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...

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!

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

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

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

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...

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

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

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

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

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

More on Donor Day tomorrow...

home sweet home

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

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

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!"

stay back!, originally uploaded by Holly Cocker.

Kangaroos!!

rottness island, snorkelling and quokkas

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!

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

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

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

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

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

'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

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

Full article can be read here.

the department of health meeting and peritoneal dialysis

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

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

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!