2012!

2012 has been a pretty uneventful year for Kasper as he's been extremely well behaved keeping my creatinine nice and low. The rest of my body hasn't got such a glowing report though...yes ankles, I am looking at you! (Breaking two ankles and being in plaster hasn't exactly been a highlight of the year...!)

However due to the magic of Kasper I have been able to be part of the Clipper Round the World sailing race, which I blogged about here. The experience of sailing on a stripped down racing yacht with no sailing experience prior to Clipper was amazing - not to mention the fact that we sailed from San Francisco to Panama which took four weeks. We worked on shifts of four or six hours to keep the boat moving in scorching heats of up to 45 degrees, at times it was unbearable and sleeping was certainly out of the question. By the time we were a few days off Panama I became unwell and was so exhausted I was signed off the rest of the race. Although this felt like a bit of a blow at the time I am amazed I was able to take part in the first place and I had an incredible time meeting lots of amazing people - and of course raising awareness for organ donation at the same time.

Hopefully 2013 will be very uneventful for Kasper too. Not a day goes by without me feeling how lucky I am to have been given the gift of life by Oli and my quality of life is about a millions times better than the pre transplant days. 2012 has also seen me meet the most wonderfully special person I could have dreamed of meeting and for that I feel even luckier. Roll on 2013 and all the adventures you will no doubt come with!

Ahoy!

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.

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

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

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

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