Transplant Games 2012

                                                     Wednesday 22nd August

Welcome to Westfield Health British Transplant Games, taking place this year 2012 in Medway (Kent). I arrived the night before, as was due to rehearse at Dicken's World with Jamie (another transplantee) for a magic performance on the Friday night. It was fuelled with a milkshake at a local American Diner next door. So, rehearsals done and now time for a meal out in the complex, and a quick meeting with a friend from Twitter, Graham who also supported the event and took some great photos. Then, time to return back to the student accommodations whereby most of the Harefield team were staying.

Thursday  23rd Opening Ceremony

My day began early setting off into Gillingham - for a wonder in the town and always time to check out a few shops ;) Then back on a local bus to get ready for the Opening Parade.

Happy and Smiley

Well here we all are about to parade and very proud from our hospitals ,  competitors from the ages of 2-82 and 600 athletes partaking in this year's Westfield Health British Transplant Games 2012.
There was also the 'donor families' parading with us with a banner at the end of the line, and much respect for those who were there. I was lucky to be able to be able to speak with a lovely lady named, Claire who lost her mother, Linda to a sudden brain aneurysm almost a year ago. It was quite emotional to hear of Claire's experience of this and one that after our conversation made me feel very reflective, and think again of the man who gave me his lungs. Her mother sadly passed away aged 59 and Claire informed me that she was with a friend, and then suddenly she stopped talking mid conversation, and had a stroke. Then Linda was unable to talk, walk, function and the stroke further caused a heart attack which put her into cardiac arrest. Her mother was now also paralyzed and when in hospital was induced into a coma. This was to be a precautionary measure to reduce swelling, but during the night she suffered a second bleed. As Claire went on telling me her story it was hard not to be moved and hear the emotion the way Claire spoke to me. Everyone has their own story and it is sad to loose someone, but amazing to think that part of her mother lives on. It was always known what her wishes were and her views on organ donation. From this, Claire has also built up a good friendship with the Transplant Co-Ordinator at the hospital where her mother went on to give life after life.

Her mother  Linda, went on to help 6 people and both her kidneys, liver, both corneas, and vessels from eyes/behind the eyes were used to help recipients. Claire has received one letter from one kidney recipient. Our system has a lot of elements being anonymous and not revealing too much about the donor and recipient. I was told how old my donor was and the gender. He was a man and aged 42, and although I have written 3 letters, I have never heard back. I must admit for me personally, I find this one of my hardest struggles not knowing anything else about this man (and I may never ever find out). I had in my mind that I would hear back and maybe meet the person's wife/brother/mum or someone related to him. Sadly, this was never to be and part of my journey I need to still adjust too. For Claire, she expressed that it would be nice to hear back again from the first person who contacted her and hear from the other recipients. I guess though, everyone has various opinions and different ways to cope with loss or receiving an organ. Also, for us recipients whether we do write to our donor family or not. It is a very individual experience. After speaking to Claire, it has made me feel I want to write one more time, and if then I don't hear back....perhaps I need to heal and accept this. There isn't a day that goes by whereby I don't think of the man who lungs I breathe with and how he saved my life. I am breathing and living for him. I would like to thank Claire very much for her time talking to me over this sensitive issue, and Claire also expressed that she would be happy to talk to other people who have gone through similar experiences. Please get in contact with me, and I can pass your details on. Thanks

Harefield Team

It was great to see friends again and meet 'newbie's' (newly transplanted people attending the games) and walking proud with our hospital banners towards Rochester Cathedral.

The Parade is Starting

Each hospital was introduced as we entered the stunning cathedral, and extra mentions of people who done perhaps something great/extra-ordinary last year/this year. As our team entered and sat down, I heard my name and my sailing venture through the microphone followed by some 'woo's' of friends sitting behind me. A variety of displays were put on for us including:- a male choir, dance shows, speeches, and a very special performance (song/piano) by Peter Murray - as mentioned below.

Inside Rochester Cathedral welcoming all the athletes

• • Some information about Peter Murray
                                                                                                                  Now aged 20, transplanted 17 years ago 23rd May 1995, and was born with congenital nephrotic syndrome where protein, vitamins and minerals etc leak into the urine so you lose so much of what you need and start holding toxins in the body.
    
    
  • Peter wrote a song, called 'Standing Tall' and told me that he has been playing piano since he was 9 and writing his own songs on and off since 14 years of age. The inspiration for his song came about because he wanted to write a song which really understood the depth of the difficult experiences that transplant patients go through. Also, the scale of the gratitude/regard that we all have for our donor families. Peter wanted members of the public to be able relate to his song/lyrics and connect with the importance of organ donation.
    
    It was truly amazing, and I was really impressed and it definitely needs a mention - hence why blogging about about it. Please listen to his song here Standing Tall. Thanks x

Peter Murray

Friday 24th - Party and Magic

How about a nice chilled day for me...hmm me thinks not. Well, I did want to make sure I got plenty of rest so was able to give 110% for a magic performance later this night, and still to have energy to party after. I have been brought up from a world of magic due to my parents being magicians for over 20 years and touring the globe with various illusion shows, and my father a children's entertainer and also specialising in children's magic. A friend Jamie Jessop has been performing magic from a young age and a status update saying he was going to a magic convention - sparked me saying something like...'Oh my parents did those and I used to go to many as a child....' and someone said why don't we do a double act.

And....the idea was sparked!!!! It even escalated that Jamie had been buying books from my dad and then the penny dropped..is your Dad????...Hahaha...Yes I told Jamie. To now cut a long story short we decided to think of a modern show with illusions and call ourselves, 'Spare Parts'. We had maybe 5 months to make a new show from scratch and be ready by June as then I was going to be away sailing. Upon my returns, it would be just a case of final rehearsals - so, with little time and as many weekends as we could attend, the show developed! And the rest they say is history ;)

That night we saw the venue fill up with about 150 people at, Dicken's World. We had an introduction and then our music started to play from the centre's sound system. Star Wars dance music filled the darkened area and any nerves now gone, we rocked it! Jamie and I both really enjoyed performing and had some very good feedback afterwards. Feeling on a high, it was now time to pack up and let the night continue.......

Don't Mess with me

A little bit more information about Jamie and why he needed a kidney transplant, now 23 years old and his transplant was brought about from having kidney dysplasia. This is where the internal structures of one or both of the baby’s kidneys do not develop normally. Fluid-filled sacs called cysts replace normal kidney tissue. Kidney dysplasia usually happens in only one kidney. A baby with one working kidney can grow normally and has few, if any, health problems. Babies with kidney dysplasia affecting both kidneys generally do not survive pregnancy, and those who do survive need dialysis and kidney transplant very early in life.

So after the magic packed away, a quick microwave meal and costume change number two......the night then turned into 'Army and Navy' theme disco, and it was great to see many people as the party atmosphere filled up with camouflage and officer uniforms.

Terminator's ;)

Fight!

Army and Navy rocking it

It was a fun night and music that suited the theme of the disco. Time for sleep as an early start needed for badminton and ready to feel energised again.

Saturday  25th - Badminton  and Team Meal 

Nevermind all the athletes competing at the Transplant Games, sometimes we may require the assistance of physio's and let me introduce Alison and Sheila.

Alison helping athlete Lora

I asked some questions to both physio's and Alison went on to tell me that her involvement with Transplant Sport started in 2001 when she had an unexpected phone call from a girl, (Sandy) who had worked with her at Physio Practice, then left to emigrate to New Zealand. Her sister was a member of the British Transplant Games team and so Sandy had agreed to go with the team to Japan for the World Games in 2001, but couldn't go due to her new work commitments in NZ so she rang and asked if Alison would take her place. After being interviewed with Christine Evans who was a Team Doctor at that time, Alison then signed up - not knowing what she was getting into. In order to meet up with the Team, Alison  went to her first British Games which were in Leeds and was overwhelmed by the nature of the event and also shocked that there was no Physio support to any of the athletes at the Games. Alison's first Games with the Team in Kobe, Japan, was a revelation and a life-changing event - and she became hooked. The next year at the British Games, Alison turned up with a couch and some tape and started to provide a limited service which over the next few years turned into providing a team of people and a more comprehensive Physio service. It was her idea to provide for the transplant athletes the same level of support that any national level athletes could expect, and in the last few years with Physio volunteer teams of up to 20 Physios/Sports Masseurs. The service is now an integral part of the planning and provision for the Games, and is both expected and well received by the athletes. 

As the understanding of the role of Physio increased within the Team and the size of the British Team grew it became necessary to have two Physios accompanying the British Team and so this has been the case since 2007. Alison went on to tell me, that she, 'considers it to be an honour and a privilege to accompany the Team to the World Games and to manage the Team of volunteers, all of whom must pay their own way to work at the British Games. So many of the volunteers do become hooked on the experience as I did, and so I have no trouble finding people to volunteer these days! The Games and the athletes inspire me enormously and I cannot imagine life without them or without the numerous wonderful friends that I have made. It can be hard work but is always worth it! I am looking forward to Durban with the Team and the planning starts now towards Sheffield 2013!'

And now also some news on Sheila, another physio at the Transplant Games - who started when the games came to Coventry and has been every year since, and really appreciated assisting at the world games in Sweden with Alison. 

Sheila's association with TSUK has changed her as a person and has given her an opportunity to be part of a very special community of people. Sheila explains this being like, 'my extended family, and that it was so easy to fall in love with everyone.' And, 'they are highly competitive and deeply care about each other which is very unusual in sport. I have worked at children's games, school games olympic and about to do the para olympics. I have worked with teams and individual both local national and international level. I have enjoyed all of these things but my heart belongs to the TSUK. A very special team - and we are very lucky to have Alison lead us all to maintain a professional and very high standard of physiotherapy.'

Shelia on left in middle with volunteers and Alison far right

So there we have some information about the lovely ladies, who as you can see play a vital role to us athletes competing at any of the Transplant Games. Often people are not aware of what happens during these events, and hence why I wanted to inform people that out games ARE just the same as any other Olympics or Para-Olympics. Thanks to both Alison and Sheila for all that they do, and to the volunteers who help too.

So, now onto badminton competition day with an early start to register for 9am and a good healthy breakfast to start my morning. I was competing with Lisa in Badminton Doubles and the first time we have partnered up together as a double.

Getting ready for battle


Lucky us we both won silver!

Lisa and I winners :)

Silver Champions


The evening was a group meal at 'hollywood Bowl', and I was very good  avoiding a burger for salmon. But, it all failed after we shared a dessert with ice-cream, cream, sweets, meringue and lots of naughtiness. Bed by 11.50pm.


Well, take note of this photo below...and...'just do it'. Thank you and goodnight xx

Just Do It

Sunday 26th - Athletics and Gala Evening

Hello and good morning from the track and it was a busy morning for me with 3 events back to back. Javelin from 9-10am; Discus from 10-11am and Shotput from 11-12noon.

With Simon - free chips for a photo ;)

Jussie Bolt

Getting ready to throw the Javelin

Discus action

Ready to shot putt

The Bling: 1 Silver and 3 Bronze's

Being filmed for British Heart Foundation

A day over and clinging back to the room staying in for mini rest and again a quick turnaround for the last night of the long weekend. The Gala night is whereby everyone comes together for a meal, final awards/presentations/speeches, and a chance to have a good boogie celebrating us being together and life.

Sunday Closing Ceremony

Closing Ceremony was once the Badminton Courts ;)

With Richard also an Olympic Torch Bearer

Party Party

I would like to add a quote from Lynne Holt, an incredible woman who not only is a Clinical Transplant Co-Ordinator, but also the UK Team Manager.
Lynne Holt, from TSUK, 'We are really looking forward to this year’s Transplant Games. Olympic fever has really gripped the nation. We will be selecting our Team to represent the UK at next year’s World Transplant Games, to be held in Durban. Our transplant athletes are the best in the world, running the 100m in 11.16secs and swimming 50m Freestyle in .26secs. However, all our athletes are gold medallists, in that they have all won their race for life!'

So there you have it! An insight to the Transplant Games, please pass this link on to help inform people and let's spread awareness of Organ Donation and how important it is that we too get more media to promote the goodness that there is life after life - gives hope to so many waiting for a life saving transplant.

Happy smiles to each of you. Thanks for your time reading my journal. xx

Living it Up, because I can now xx

Journals I wrote for Clipper Website - For Your Eyes :)

Hi everyone - these were two blogs I wrote onboard the EIC yacht whilst sailing around part of the world, and may not have been seen by people (from the Clipper website) - so decided to publish on my site too.  I have a poem still to upload, then also to write about the last part of the race from Netherlands back to Southampton, and the race finish day itself!! And lots more photos (took over 1,300+) but, will only upload some on here. If anyone wanted to donate still, my Just Giving Link is still running - if you would like too. Happy reading lovelies in the meantime. xx (Oh...I am glad to be home - hell yes!!) hahahahahaha

RACE 14 - DAY 3 - by Justine Laymond (Edinburgh Inspiring Capital)
I was hoping to blog on my sixth Transplant Anniversary (July 9th) – but I had better things to do. Spending the last two days bed bound with a private butler bringing me food in bed. Champagne and salmon en croute and a non-stop supply of my favourite mocha cookie crunch frappucinos... Hold up....as if – was a dose of sea sickness instead. Ironic really, as I was hoping to have no more encounters as per crossing the Atlantic Ocean.

I reckon there is nothing worse, when you haven't been able to eat or barely drink, and your stomach still has that throwing up motion with nothing to say hello too into a bucket. Needless to say, it's a horrible feeling and a few others suffered too. Think I was champion over these days with most amount of reaching and making some horrific noises from reaching and my stomach being tumbled dried inside and out. To my surprise no one heard.....or maybe being polite. If  I'm honest, I was worried about my medications not being able to stay down and missed some dosages that my body requires to keep me alive (in basic terms). I lay in my bunk very tearful and could not see a light at the end of a tunnel.

However, I do remember a night torch being shone in my face as Piers our skipper tried to reassure me the rough seas would change in 2,3,4,5,then 6 hours – did he realise he did a number increase, perhaps he should have started from 6 deducting instead..lol. But, I said get plans in motion to get me off the boat. At this moment I thought, yes, now I am in game over and had had enough and was not happy and couldn't bear at all how I was feeling. I guess I am a fighter and just tried to continue...

The next day, out of my bed, smoother sea and a big happy Jussie smile re-lit my rosy cheeked face. It's difficult to eat when no food is consumed over 2 days as the stomach shrinks. But...when the appetite does come back...Woohoo! Happy Days!

I had written a poem to read that day in respect of my donor, never had the opportunity. But here it is for everyone to read.

Gratitude

Thank you for life
Waking up smiley
No worries no strife
I think of you highly
Placed into my body -
By a surgeon's knife.
We are as one
Unified as whole
One aim – one common goal
Ambitions, drive, challenging roles
Enjoying life whilst can
It isn't forever -
So you gave me a plan....
And I do all and
As much as I can
Breathing for you
Living for you
Loving life for you
Your an amazing man
You've extended my life
I want to carry on with colourful hair
Be the longest living blue rinse – Granny Lungs Yer Yer, you heard it here first ;) xx

RACE 13 - DAY 5 - by Justine Laymond  (Edinburgh Inspiring Capital)
Wow! Where do I start? It certainly has been a roller-coaster for me and perhaps for the other leggers who joined Leg 8. The first part of the race from New York to Halifax was like a smooth introduction to get back into the swing of things. Weather and sea like a dream. But, I guess good things don't last forever.

We all only had a few days to enjoy Halifax and I saved one day to combine Media/PR worked I had organised. Not realising I would make front page news of their National newspaper, and appearing on two TV shows. It was great fun and definitely raised the profile of Organ Donation, LAM disease (the rare condition I have) and naturally for the Clipper race itself. I was quite overwhelmed on race departure, as a lady came to see me to say her husband died and she consented for his organs to save the lives of others, and wanted to meet me, as a recipient of donation. Needless to say we both cried -it was very moving. Even on a day out to Peggy’s Cove, I had people coming up to talk to me – you are the lady on the newspaper....I saw you on TV etc... And lots of people wished me luck. I am grateful for all this as my nerves for a two week journey sailing across the Atlantic fills me fear, and all I want is to keep well. So, with that in mind...Goodbye Halifax and welcome the Atlantic Ocean.

So here we go.....woohoo! All wearing our sexy kilts with underwear (was a tad windy) ;)

I seemed OK up until eating dinner, then oh dear running for the heads and vomiting like crazy. The next two days I was so poorly & bed bound unable to eat, drink and lost my appetite for three days. True to say, I felt crap and really hoped I would pass this corner and get better. Thankfully, I had Darius (transplant surgeon) and Niamh (Paramedic) keeping tabs on me. Well – what an intro to the rough seas ahead. But, I am a fighter and wanted to get through this and make land! (Just a lot of days still to go).

Hurray...mmmmm...food! Finally, I felt able to eat again and stuffed a delicious lunch and dinner cooked by Paul and Martyn. Jussie is BACK!! It is quite difficult adjusting to the watch systems, lack of sleep, and if I'm honest I am feeling quite drained and exhausted (and it really does take it of me and my body). But, I am also lucky that my crew are very supportive. On some occasions I have found myself out of breath (hard to explain for people who don't what it is like to have a lung condition).

But, again, I am stubborn and continue forward and want it all to be rock and roll!! So watch this space.....come on Ireland – I am ready for YOU!

Being ill again is NOT an option...so with all my Grrrrrrrr...I WILL complete this part of the race and make Ireland bouncing around with my usual smiles. Xx

Sailing Memories on the Longest Day in June

Imagine an image that never ends, open waters, rehydrated



food for crew that survive on this for days on end. This is not the never ending story but in fact the longest day in June (on a repeat button). A team of
strangers trained to operate a 68 foot yacht, live without glamour or
luxuries. A far cry away from any TV, radio, or social networking sites
for days, weeks and a crammed solace to eat,live, and sail.Our day
consists on a shift pattern of on/off watches, mothering duties
(food); engineering (cleaning out bilges,maintenance of yacht); sailing on
watch and much needed sleep off watch.

Where could you envisage a day watching the earth's natural habitat of life in real motion time. Seeing sunrise and sunset crossing the Atlantic Ocean. A time to experience all weather elements and nowhere to hide. No
shelter and just to embrace the rain and waves crashing down on our
foulies – the splashes hitting our eyes (the only visible space showing).
Looking out onto the sea, and having the most gorgeous dolphins squeaking
and swimming with us as our yacht pounds through the water. I step forward
to the bow and see the dolphins doing their little 'chase me' dance as
they pop out of the water showing off one by one, then a few together. 

How lucky are we to be in nature's world and not watching a wildlife program on TV. This beats any show, then also to witness whales too – wow! A vision of pure beauty up close and personal. Have no fear, because the sea
around has life and is watching us to! Curious as to what immense form
speeds readily through their territory. 






Even birds fly around and occasionally come on-board to say hello and fly in/around our sails/deck area where we chat and sometimes slurp on a much needed hot tea.


The day is a routine but with variety:- new conversations, wondering what
food we will be eating; by adding water or from tins. Lack of sleep,
trying to get ready/dressed, even going to the toilet is a challenge when
the yacht is on an angle – hold on tight, its a a 45' angle!


Can you hear us laughing echoing out into the wide Ocean hoping for a glimmer of land, but knowing maybe another 8 days yet for such luck. Our sounds like baby
whispers dissolving into the air, hear us then with a flash as the wind
forces us forward...that chapter lost forever (except in our memories).
I for one feel very lucky to be writing this blog on the longest day of
the year, as my life has been extended thanks to a double-lung transplant
in 2006. I appreciate every day, like it's my last and absorb every sight,
sound, smell, image around me. Today is no ordinary day, but one of pure
beauty and challenge as I breathe in fresh sea air. My emotions sometimes
getting the better of me without the crew knowing I am wondering/hoping
that I get to face another day/ live to tell the tale for next year's
longest day of the year.


Live and cherish every day, don't take things for granted, and try and live your dreams. Love those around you and be kind – enjoy, smile, and bring laughter into your life. Today may be the longest day of the year, use it in reaching for your goals/ambitions. Time for me to get back on deck parade a smile to my crew, hope for a good last hour before I settle in another dosage of galley goodness and a few hours sleep, ready to get going and say. YES, I AM still ALIVE for today!

I'm 6, Alive & Coming Home #clipperrace

Celebrating 6 years since my double lung transplant at sea hoping for champagne, sweet treats & happy weather/winds. Well, one can hope - and not being sea sick again & bunk bound seeing no light at the end of a tunnel. So, that was the delight that faced me....

Leaving Ireland heading for Netherlands about 5-8 days max depending on sea/weather & knowing Leg 8 of this race almost closing. Stocked up this time with drink (juices) & goodies so a happy Jussie in the event foul tasting water & food stashed away as reserves. Nothing can be as bad as the Atlantic - especially reassuring as not like 15 or so days at sea. 

So ...waving cheering smiling at the thousands of people supporting the Clipper yachts as one by one we depart. The Edinburgh inspiring Capital yacht I'm on with a crew wearing tartan kilts and the men with knee high socks too (very appealing and easy on the eyes ;) we shout back all enthused by the rapturous send off. Apparently, the best farewell response in all of the race departures so far (rumoured by most of the crew). It certainly was awe inspiring for me to witness and I was buzzing with excitement! Whoop whoop!

The buzz kinda stopped when watch systems kicked in & time to wear our sailing clothing instead of tartan fashions. Go!!!!!!!! The race HAS started!

I finished my duties at 6pm and went to sleep about 8-8.30pm - normal sleeping time now for me (since the 6am  - 6pm watch introduced) requiring a 5.20 am wake up every day for breakfast & time to get dressed accordingly with life jacket + harness. Eek ooooh dear, feeling sick I rushed to get on deck without my foulie jacket & surprised by many as so early. Best wear my jacket as its cold I was told.....no chance if I go back below deck I knew I would be throwing up. My jacket was given to me & I sat in the cock pit taking off my life jacket, jacket on, life jacket back on.....harness...moving to low side and YES being sick overboard! so, best I get back below on my bunk lie vertical and wait for the feeling to pass. 

Roll on 48 hours later, throwing up over myself, in the bucket by my bunk, infront of  Piers (skipper). Making horrible reaching noises trying to empty my guts when there is nothing inside & bile/foam inside. Perhaps I was a rabies case foaming at the mouth....lol....not how I intended my 6 years and I'm alive transplant anniversary was supposed to pan out. At my lowest , asking now for plans to get me off the yacht, so near to Netherlands, yet any longer for me simply agony. 

I really don't know how I master through, like other people with sea sickness. For those not having or knowing how it feels. Slight extreme, but imagine your guts being twisted & spun like in a washing machine. Your head like helicopter blades going at 100 miles per hour. Desperate to go to the toilet - but your body paralysed and too weak to move. Trying to take sips of water and knowing another washing machine motion & reach for the bucket shortly after. 

My love of food - now the thought of hatred to eat.

Ok, you get the picture, and having experienced this already across the Atlantic Ocean.... It's true to say I'd had enough! GAME is OVER. The worry also missing taking my medications & throwing them back up. The immuno suppressants needed to protect my lungs - now further weakened as no protection around them. Susceptible to infections....

BUT....I did it....I managed to drag myself out of the lower hospital bunk and have some crew sing 'Happy Birthday' (lungs) and I managed a smile :) Jussie was turning that corner, a few more days to Holland and I WAS going to make it!!! Other crew saying 'Happy Anniversary'. Yay.... I can do this.

The next few days, I bounced back again - started to try and eat. It is difficult surprisingly - but, eventually the appetite does return and then like some more!!

Well hellooooo Netherlands and am I glad to be here. My time here has been fantastic seeing:- Amsterdam, Volendam, Alkmaar and Den Helder where staying. I spent time with Joachim who I met at the World Transplant Games (Sweden '11) - which was great. And I also met some other transplantees  joining for a corporate sail the following day.

The hospitality, food, ambience has been fantastic!

Believe it or not - I have done no media as such here, just a photo shoot with the transplantees which no doubt will be used for some article (s). Actually nice to have more time for me, rest & exploration of holland. I have bought plenty food & Dutch cheese to take home :)

Well, I leave tomorrow and arrive back to Southampton on Sunday. I am ready to come home after 2 months away challenging myself and beating odds that almost ended my venture. Just a few more days to go. I guess I feel slightly anxious as know the weather/sea will be bad again for a short time. I don't want to be sea sick on the returns - but, it seems I struggle when it is like this. The only part of the race I've been well was the actual first part from New York to Halifax (calm seas and blissful sunshine). Well if I am, I will get through it as I always seem to do & regardless I'm coming home...so, that is MY light at the end of the tunnel.

I still have many more blogs to write up, obviously this last part of race....maybe a reflective/overview of the whole race, copy & paste blogs I wrote up on the Clipper website and a blog I wrote re: when it was the longest day (June or July I can't remember now)..lol, for some other website.

For now, I am sitting in a Dutch cafe with a cappuccino and slowly consuming a fresh cream cake with a banana flavour iced coating. For any weight I've lost, I've gained back on land very quickly ;) I am looking forward to the foods I eat and enjoy (that of a healthier one). Consume more fresh foods, salads, fruits, jacket potatoes...fish etc. I am done with overdoses of carbs, bread, tinned, space food, cakes & junk food throughout my 7 weeks. However, I wish I could say I was done with crisps...pah ;)

I do also still have to resume training for the British Transplant Games 4 weeks upon returning & rehearsing for a magic performance doing at the TX Games as well. I need rest, but that will be in another month. And next week, I'm back at hospital for a major check up of my lungs, heart, kidneys etc and I really hope all is well after my time away & how/what I've pushed/put my body through.

Hmmm....cake plate is now almost empty & one more cappuccino slurp left. Right folks best I stop writing and enjoy my last rest, packing, meal out & setting sail in the morning. 

Lots of love & I'm 6 with my lungs....I just hope I get more multiples of 6 still xx and I hope my donor is proud of me xx

Atlantic Ocean blog #Clipperrace History made + 6years celebration

Tears running down my face as I step onto LondonDerry's  pontoon in Ireland. I've done it! About 15-16 days crossing the Atlantic Ocean, an achievement that over a week into the venture -  I was unsure I could actually complete. History made, as the 1st double-lung transplantee in the world to have sailed the Atlantic Ocean.

Cameras and all the media in my face  filming my watery eyes,  when all I wanted was me time alone to cry by myself and enjoy a bottle of Pepsi given to us in a complimentary goodie bag given (for every crew member by Sainsbury) and to savor the taste of fizzy pop.

So many memories:-  highlights, highs, lows..... Where to start? What to say first? Maybe, this blog will be jumping about as I try to recall excerpts from my memory on this voyage of challenges.

I guess, part of the clipper venture is not just the sailing, but the mental aspect cooped up like hens in a cage & if you don't get on with someone - you still have to live and breathe in that tiny space. Learn to deal with it and carry on in a harmonious environment for the sake of the crew. It's true to say, you see different sides to people's personalities when stressed, hungry, or even sleep deprived. Also, all the crew were fabulous and understanding to my condition and my struggles became evident after departing from Nova Scotia.

The first part of the race from New York to Nova Scotia as I've said in a previous blog, was sun and calm seas. Now this was not to be the same course on the books. The few days starting across the Atlantic were of sea sickness and about 3 days of no eating. Then that awful feeling of trying to throw up and as no food/fluids consumed, the constant reaching and stomach pains. A worry that my immuno suppressants were not staying down and some dosages being missed. So, early into the journey and I was already unwell. I did turn that corner and began the strenuous watch systems again and throughout the night too. Initially all seemed ok, then I realised on top of being sleep deprived, my body was really starting to struggle and I felt as every shift/day passed I was getting weaker and weaker. One night watch sitting in the cold, my lungs felt tight and hurt, and my bones were literally shaking with cold. I knew this was no good for me and would see me get very unwell with chest infections/further lung complications and I was so upset and tearful with no one seeing. I knew then that I was going to keep struggling and be unable to keep this up. I emailed my parents saying, 'this is killing me' and thought game over and I would need fly home to recuperate/recover.

I did confide in someone, who said I should speak to our skipper. An alternative shift was created just for me to work from 6am-12noon on the first watch and then 12-6 pm on the second watch with breaks in between. Hurray! What a god send. Time to let my body repair and sleep. I tried to explain to Piers (our skipper) that if my body can't repair, I cannot function/improve. No night watch systems, and a chance to try and sleep through the night.

Being questioned onboard by Della filming for the Clipper series and media upon arrival...I was asked if everyone was supportive, I said yes. Sadly, that wasn't true - only one person confronted me with their opinion who basically said I had no right to be on the boat and other stuff. Again, this experience challenges you mentally how to deal with issues like this, confront and talk about them. I went back on deck and was so hurt cried my eyes out. Then put my smiley face back on and carried on. Everyone IS entitled to their opinion, that is fair to say. My opinion is that I have every right to be onboard regardless of how much I can do with any strengths/weaknesses. Also, knowing this person is older than me and has lived life - an opportunity I know will never happen. My lungs are rejecting and every day for me is a bonus, and I DESERVE the chance to achieve whatever I can whilst I can. Rant over, sorry. However, I have learnt one other person feels the same way too. So, in life not every one will get you/understand you/situation/health etc and that is another challenge to deal with and carry on.

Onwards and upwards, days and days of sea and nothing but waves, reefs in/out, sails up/down. Sitting on the high side, days withs lots of chatter and laughter. Then times getting soaked on shift as waves crash over, little or no conversation just wishing the shift to be over or consume lunch/dinner and sleep. Moments eating whatever you can - time has no function and days get lost. Eating biscuits at 9.30am or 4am, crisps, sweets at any hour - overdosing on sugary boosts to keep you going. Excitement when dolphins swim by and chase with us as we pound through the water. Or, the occasional whale spotting! Nature at its best and raw habitat, stunning and awe inspiring. Even seeing birds sweep across the waves like surfing and chasing the ocean at a speed only one can imagine. Beauty. Life. It's happening right in front of my eyes and that feeling of deja voux as it repeats itself again and again.

Capturing every moment before my eyes, like a camera...click... click. I have taken many photos and something to organise when back in the UK and put some on here too! Savouring every breathe, deep breaths in and smiling :)

On one occasion, Doris (Lesley) was on the helm, and the yacht came to an almighty halt for precisely 1 second. Doris hit a whale, or the whale swam passed us at the bow as untimely and unlucky. Woooooo surreal and shaky experience, still intact the wind in the sails moving us through the sea. 

So, what about the food - you may query? Well, fresh meals and fruit/vegetables are for the taking until supplies run out. Then tinned food, noodle sachets, and space food  (boil hot water into food and leave for few minutes) and then options such as:- lasagne, chicken teraki, sweet & sour pork, sweet & sour chicken, and so on. Generally, not too bad - but, it gets to a point whereby burgers, steak, chips, bacon, fresh veggies/salad, and all other delights become far fetched imaginations and cravings that are still like weeks away. My body was craving real food, but, consumption is that mostly of carbs, bread made daily,cakes/crisps/biscuits and sweets. For some reason leaving Halifax (Nova Scotia), the water tanks filled had a heavy influence of chlorophyll added - the taste making me sick and reaching every time. I asked my parents for any bottles of water as a slight taste before departure (I noticed this twang). These few bottles became my lifeline crossing the Atlantic and tiny sips rationed as best as I could. I was dehydrated at times and didn't drink enough - only when the water cooler tank was turned on and fresh water was being filtered. Eventually, lemon and ginger tea was my only option for little sips somewhat disguising that awful taste. Other crew members also felt the same, but managed to drink it. I guess my body is very sensitive and it just said, NO! Sometimes, when we were having tinned fruit as dessert, it was like I was begging for any syrup juice left (even if 1/4 cup) to try and rehydrate my body!

I also started to become very homesick. I'm so glad I set up satellite email and was also able to have updates done for me on Facebook + Twitter. Thank you to all those who tweeted/replied and messaged me back whether emails or via Facebook . My PA's ...hahaha..(one of my brothers, Gavin and friend, Andy - have been superstars in orchestrating the delivery of these. In my low times, these gave me strength to continue and I am extremely grateful :) 

So, as you can see the Atlantic became a struggle for me with good and bad days, determination to keep going and hope and pray for land soon. It wasn't happening fast enough...and I really had to dig deep. It was hard for most of the other crew too at times and pulling together as best as possible is necessary. We even went through a storm, an experience that filled me with fear and relief when it was over. The last couple days were of rain and stormy seas until land came in view. WOW! LAND! Smiles all around, joy, amazement that we - I had done it...........and as we pulled up onto the pontoon I became overwhelmed, and that is when the tears started. I stepped off the yacht and burst into tears. Cameras, filming, media...all a buzz among my teary face and stuttered words of OMG I've done it.

Justine Laymond has sailed across the Atlantic Ocean...anyone contacting the Guinness Book of Records please for me! Giving up almost an option - became NOT an option!

I have spent some time now in LondonDerry and a day in Belfast, making many new friends also from this Clipper trip. More media buzz from Irish TV, radio, Scottish newspapers, CNN news, ITV news, and apparently newspapers back home - that I didn't even know had been done. I am trying to get as many links from whatever articles possible and will publish once home on my blog or as and when I can. Amazement from recognition again being out and about having people approach me like in Nova Scotia. Also, for other crew on Clipper yachts talking to me, and for me saying oh I'm Justine......"we all know who you are" was the regular reply.

One day was spent doing a corporate sail this week in Ireland with breathing support groups, (British Lung Foundation and Breathe Easy) and the NHS UK Blood and Transplant Group, and a couple people also joined with lung conditions. It was a great day out and more photos done and further media articles to follow up (again to which I have asked for any links). I also met another lady who had a double lung and heart transplant of almost 8 years, needless to say we got on very well! It was an inspiring day for me too, and I have been asked to visit and do a talk for these groups sometime. 

My blog is jumping from topic to topic as I remember things, but time to call it a night, as I'm departing again to sail to Netherlands 5-8 days at sea. I hope it goes well and I'm not sea sick or feeling unwell. I have had early nights most nights and socialized to a minimum to get much needed rest still for the next voyage. 

We depart 7th July, and on Monday 9th July at sea, it will be my 6th double lung transplant anniversary. Thanks to my donor letting me breathe and relish every new day. Breathing for you, I hope you are proud of me. 

Lotsa love everyone xx

Goodbye Canada time to sail #Atlantic ocean

Well I made it from New York to Halifax in Nova Scotia! And tomorrow I sail across the Atlantic Ocean to Ireland!!

My first 5 days of sailing from New York - after an emotional farewell & lots of tears, time to face my reality ahead and no going back. I guess I was lucky that the sea and weather was quite calm, and no scary moments. It was good to bring me back into the sailor way of life. ..watch systems, mother/engineer roles, lack of sleep and refreshing sailing actions. I did find the watch systems through the night extremely exhausting on my body and after 2 nights of this, shattered! It was a struggle and hard to stay awake, but somehow I did.

The crew are fabulous and some/most I have met before at training or other events, and even the skipper for this leg 8 (Piers) is very understanding, a good leader and a people's person. Piers' gives good guidance and knows how to work/build us all as a team to get optimum performance. It was such a close race, and we came 4th with 13seconds to the yacht taking 5th position. Talk about nail biting and extreme cheers and shouts as we learned of our position. An amazing introduction to my first part of the race within this leg. I only had one night, the night before we arrived, whereby I felt unwell - but saw it through and the next day, was back ON IT! :)

So much has happened, and I'm trying to remember all - but just writing snip bits for now. I have taken many photos and a blog when I'm back in the UK will be written up and YES lots of photos then. But, for now - you will have to just feel for what/how it is like through my writing.

I did enjoy my time in New York, seeing great people, sightseeing, shopping, over eating - think I should stop this though ;)

On arrival in Halifax, Nova Scotia - and mooring up, I saw my parents walking on the pontoon!!?? I remember seeing them last in New York and saying see you back in England. But, this was a surprise they had planned - and WOW, I was gobsmacked and totally delighted. Just means, they will say farewell again when I depart from Halifax to get to Ireland. I did ask if they were going to surprise me there, and the answer was no..lol x

My first night was spent in a hotel - room service for food and then sleep!! I totally wiped out - my body was craving sleep time and lots of it!!! Lovely to have a warm shower too, and some luxuries unlike any of which are on board the yacht.

I only have had a few days in Nova Scotia, and not much time for exploring - more for rest time and media work. On 13th June was spent with interviews from 2 TV shows (CTV Morning Live; CBC Radio; Chronicle Herald newspaper, all being aired/published 14/6/12). Then a final drive to the CTV Studios for the show 'Live at 5', which was a great experience. All the production team/anchor men/women were very friendly and in awe of my story. It was nothing like I expected - comfy chairs and a 1-2-1 with Bruce Frisko (Anchor) and somewhat relaxed like being interviewed as if a celebrity. At the end, Bruce said 'you didn't need me' and how well I did.  I really hope all this media helps the continued awareness campaign on Organ Donation (as well as LAM disease and for the Clipper race itself).

Also, whilst in New York, I did do a Skype interview for a National USA Yachting Magazine (which should be published in August) and was requesedt for a follow up story upon my returns to the UK. And, I still need to do another write up (my column for Yachting World - UK online website). Busy busy!!!! Not forgetting all the PR I did before leaving the UK (local newspapers, radio, magazines in Essex and Herts; and specialist sailing magazines/websites).

I spent my last day in Nova Scotia exploring Peggy's Cove - stunning! And I was quite overwhelmed by people recognizing me from being on the TV/in the newspaper and coming up to talk to me, and wish me luck - it was lovely. And continuing with my awareness campaign. I made front page of the national paper - which I never expected (link below)

http://thechronicleherald.ca/novascotia/107016-so-i-m-living-for-today

I guess I am overwhelmed still with everything and appreciate all the love and support from all and everyone. My love and gratitude back to each of you. I am so thrilled to have set up satellite communication on board the yacht, and is wonderful to hear from people. My brother, Gavin is controlling this for me and collecting messages in one email and if I send an email back forwarding to those on my list. Also, Gavin is kindly updating my Twitter account if I send updates via satellite and then passing this onto my friend Andy (who is updating my Facebook). 

Well, I reckon my next blog update will be when in Ireland after an epic journey crossing the Atlantic Ocean. I am anxious, and feeling every emotion possible to any human being. I just hope to be able to do this, and stay well. And that the sea/weather is kind to me and the rest of the crew/skipper on EIC (Edinburgh Inspiring Capital).

This is my biggest part of my journey and I need all the luck in the world for this, and for my crew too x

Lots of love to you all

xxx

Fun times with #LAM sisters & Ducky

A busy day in Times Square - Wow! Mega!!! Like London but on a much bigger scale & everything over the top.
I'm starting to relax & enjoy my time here before the sailing part starts. Feel the lifestyle here & food :)

It was so hot yesterday too! Saw some Clipper friends, met my skipper, chatted with Clipper management ...., it's all go go!!

Also before I left England, I had arranged to meet some of my LAM sisters at a famous cheesecake restaurant called, Juniors. What a wonderful time & meeting those chatted with over the years. A day I will never forget! In the UK, there are about 120 women with LAM disease & here in USA about 1,200.

Also, my lovely friend, Kate joined us too (Ducky). Too much food & lots of chat + giggles :)

By 8pm I was exhausted & needed to chill.

Today I am meeting my friend, Emily from Washington & first stop is Ground Zero. Time to pay my respects after 9/11 tragedy xx

Breathing happy :) xx

Sent from my iPod