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.