December's Snowy News

Hey everyone,

It's snowing!!!!!!!!!!! woo!! get your wellington boots out!

Where has time flown? I haven't posted recently - so apologies from me, as I have been so busy. So much has happened, and I haven't found the time to write up my news - until now :)

So...it will be a briefer blog as the build up to Christmas now (yippy), and I may not have time to write again until next year.

So much has happened to me in 2009....maybe a couple downs, but, mostly ups and highs (and not the kind from my medications..ok)...just life being brilliant and achieving goals that I thought were not possible (Transplant Games medals/10 mile Bupa Run); winning the Essex Achievers Award (Against all Odds category)...travelling about in different countries in April and then my recent trip in November to Croatia!

2009, has also been a sad year loosing close friends who never recieved their life saving transplants in time, or loosing their fight against ill health. I often wonder, why did I get lucky...and not my friends. Truth is, there still isn't enough donors here in the UK - compared to other European countries. The statistics are 96% people they would readily accept an organ if their life depended on it, but only 27% actually have joined the organ donor register!!!!!!!!!!!!

The photo here, is with the background view of Dubrovnik in Croatia. I will still write about my time travelling there, but, will have to do this now next year. I mean It is Christmas next week!!

I am very excited for Christmas this year, and look forward to seeing family and friends and those close to me. A time to eat, drink and be merry :)

I haven't done much exercise since my holiday in Croatia, and reckon will resume now in 2010. And if I'm honest, I'm quite tired from all the training that I have done for the Transplant Games...and will see what happens in '10, as to whether I continue to push myself as hard. Or just exercise to keep fit and stay healthy. Maybe, I might even give the Transplant Games a miss in 2011 (BUTtttttttt......obviously if I got selected for the World Transplant Games in 2010 for 2011 - I WILL continue training) xx

Highlights for 2010 will be the European Heart & Lung Transplant Games in Sweden, then the British Tx Games a few weeks later in Bath. My 4th year celebrating my transplant anniversary. And my goal for this year coming, is to learn how to play Squash and enter with this sport for the Transplant Games in Sweden/Bath. Yes, I am mad....but those who know me, know that I grasp at life with this second chance that I have been blessed with :). I also will continue campaigning/fundraising to raise awareness on LAM and Organ Donation through talks and various media next year.

Well, short and sweet. I wish you all a very happy and wonderful festive season, and a great New Year!! Hope my mates still waiting - do get their lives re-vamped like mine was, and more people register on the donor register.

STAY HAPPY & SMILE LOTS !!

Thanks for everyone's continued support x x x

Oh there is a heap of media work done this year, but due to technical issues - radio, newspapers, and other articles done - they haven't all been able to be published on here. Lucky for me, I keep cut outs (except for the radio kind..haha) - so, one day someone can view everything that I have done over 5 - now entering my 6th year campaigning! :) xx

Bupa Great South Run

Sunday 25th October

So, this is it! Today IS the day for my 10mile run (17k) with Imi Spencer and Bev Pearson.

And here I am, already a number 1 winner on the stand - just no spectators or medal for winning the overall race for elite women athletes..........STOP DREAMING JUSSIE.....Oh ok poo hoo, so here I continue my blog....

I travelled up the day before to Portsmouth and spent the afternoon shopping and chilling in my favourite hang out place, Starbucks. I think I should get shares in that company (for the amount of money I spend there...or become their number ONE fan)!

Later that day, I was to meet Imi for the first time - who had learned and followed my story through a joint friend, called Emma (who I haven't met yet - but plan too). It's quite bizarre really, as I have lots friends who have followed my welfare from when I was diagnosed with LAM, nearly died over and over, through my transplant and recovery, and up to now - the present day with all my adventures with my "new life". It is like a cyber world wherby we all stay in touch, even with other people with illnesses, pre or post transplant.

Imi's mother also had a transplant in 2001, a single lung transplant due to Emphysema, and sadly lost her battle on life after about 4-5 years after her transplant. Imi has said to me "knowing some of what you have been through makes me so inspired by your courage and strength to go out there and make the most of life, in a way many people wouldn't, and because of that I decided to join you in the GSR to support and show people that if you have the determination you can and will succeed". And, I was also quite happy to hear that Imi has run marathons and was going to help support me. I must admit if I'm honest, I was quite worried and although I've had my new lungs, I still don't have full lung function, and know that I can't run continuous due to breathlessness. I kept telling Imi, that I need to run 2-3 minutes, then walk the same, and start over, and thought she may want to run on ahead....and a search party would be needed to find me..lol. However, I gained more reassurrance again on meeting Imi today and the next day, by being told that she will stay with me whether I walk/run :)

It was truly wonderful to meet Imi, and have a chat, giggle, and meet someone who talks as much as me!! So, farewells until the next morning. My evening consisted of a burger with bacon and cheese, jacket potato...followed by fruit crumble and custard in a pub. Ok..Ok...rumbled...not the ideal protein/carbohydrate meal needed....but I won't tell anyone - if you don't..Shhhhhhh :P

I was a bundle of all emotions and thought I wouldn't sleep, and I was right. And sooooo confusing with the clocks going backwards. I set my phone, but my phone automatically changed itself too. When I woke up it said 5.30am.....but really it was 6.30am...too early, oh so confused, oh I need and want more sleep. OH no you can't Jussie, you have to get showered, eat cereal that you brought with and get the milk that you left in the bathroom sink filled with cold water overnight. WAKE UP!!!!! oh bar humbug.....

One hour later, I'm dressed in my sports wear, cereal consumed, coffeed up with the sachet left in the hotel room (the worst coffee in my life - blurgh)...you see, once a Starbucks coffee girl..always one :)

Thanks to Nigel who has been driving about for this event and to which I truly appreciated, if I did drive I would be tired ontop of my already tiredness. So, now time to drive into Portsmouth to the starting point...OOOOOerrrrrrr.......WE arrived in plenty of time, and were the first few cars only later to be filled with thousands!!!

It was such a windy morning and quite cold too, we went for a little stroll along the coast and saw the run posts being set up with the clock timer. Also there were lots of tents promoting various charities. Here I am, all wrapped up at the start with all the chaos still being finished. The other photo with the ever smiley Imi!

Also, I would be meeting a lady called Bev (again for the first time who I have chatted with via Facebook). Bev's young daughter has had a heart transplant. I have been looking forward to meet Bev, and here we are below all ready to rock and roll!!

I must admit, that I was quite overwhelmed by the amount of people - the atmosphere was electric! And my emotions were getting the best of me....I needed to hold it together. Quite surreal, that I AM still alive, and missing Marc Prosser who died a few months ago (who was also going to join me on this run). To my donor, who has made this possible, and thinking of other friends loved and lost with their own illnesses or pre/post transplant. Every day, really IS a bonus, and no one can ever accuse me of not living my life and making the most of every single day!

Hundled now with a massive group in the last band to start the run........the announcement went and a mass of people including me starting to walk round to the start line. I couldn't stop smiling and knew as soon as I went over the line...RUN JUSSIE RUN!!!!!!!! woohoooooo!!!!! And we were all told to wave on approach and this was being filmed and shown on a large screen for spectators to view. And if you look at this photo, there is a man standing on a podium in the left. He was responsible for the mass warm up for the thousands!!

I was feeling very happy and started as I intended to run 3minutes, then walk 3 minutes and all seemed to be going well (up to a point). Throughout the route, many supporters came out to watch, clap, cheer, and I loved seeing the children waiting to be tagged as we ran by....I tagged some children as I slowly went by and they smiled (which made me smile). Also people watched from their houses, shops, bars....it's like nothing mattered but all the people running through the streets of Portsmouth. Also, at various points there were bands or music being played loudly - which definitely helped motivate - when you could feel yourself flagging.

Seeing each mile marked out was like seeing the best thing ever. I couldn't believe it when I was approaching the 5 mile point (half way) YESSsssss happy days :)

Although, I was starting to feel slightly exhausted and this was putting a lot of pressure on my body. I decided it would be best to actually walk a whole mile until I reached mile 6, then start to run again. Approaching mile 7, suddenly I felt a pain my left leg and almost lost my balance? What was happening? I tried to continue to run again, and on/off this pain kept coming into my left leg. The only way I can describe it, as if a piece of elastic was going - ping and making my leg fall and limp over in pain. Oh dear, sadly, this is where it all kinda went downhill and went from bad to worse and my tears came and went. All my emotions again getting the better of me, and now suffering and feeling unable to run/even walk.

However, I kept going - it was like start/stop/start/stop......just as I thought the pain had gone and I had run a few steps...I went down again. So, I walked - only to find the pain was there still. I was making good time and thought I would be able to finish the event under 3 hours and was overjoyed that this would be such an amazing thing, and I wanted to work through the pain and keep going. In true Jussie determined - I am going to do it style!

I braved a happy face, and owe a lot to Imi and Bev, who had to help prop me up each time my pain came and keep hold of me - as otherwise I would have toppled over. So, now reaching mile 8 was fantastic, and I thought just 2 more miles to go - I CAN make it!! I knew I was struggling heaps but just didn't want to give up. WOW - I could see mile 9 marker and stopped for a photo and smile. This IS it - last mile - woohoo - nearly finished so off I started again. OUCHhhhhhhh........oh my goodness, I burst into more tears - the pain was now like agony and I was crying in pain tears. I could barely walk without wincing and struggling. My leg was throbing, it was awful. At this point, I thought as much as I want to go on...that I'm not going to make it and was devasted as so near, and realising the daunting fact that I just can't do anymore. I am not a person who gives up, and thought I MUST get through this. Both Imi and Bev was so supportive and kept encouraging me (aswell as helping me walk).






The last 100m and I thought, right pain or no pain I am going to run the last 100m and smile all the way to the end. I remember seeing Nigel filming us three approaching and got a surge of adrenalin and went for it...I can see the finish line..almost there..just a few more steps.......yes......WOW......



Then......unexpected my right leg screamed out at me in agony and went limp - I lost my balance. Then, like a terrible nightmare - my left leg went simultaneously at the same time. I felt my body just go and was falling. I called out to Imi who at this point didn't realise both my legs had collapsed, and dragged me over the finish line for the last few steps.





I was screaming in pain and needed to be helped into a wheelchair as couldnt walk. OMG, I was hurting and crying so much. I wasn't even happy that I had finished, it was just all too much to cope with. I was rushed to the medical team who looked after me for about 20 minutes to observe that I was ok. The medics actually informed me that it was a build up of lactic acid in both legs. The ironic thing is, that I had dreams that I would collapse doing this event, but, that it would be my lung collapsing. How bizarre for my legs to go, and I couldn't stop laughing when Imi said, "double-leg collapse" (I've had a double-lung collapse too) guess no singles for me - my body likes to cause optimum pain times two...though I'd rather it didn't!!

I don't have any photos of me at the finish line because of my drama, I will wait until the Bupa Run website publishes what they have and see my moment of falling glory before the finish line. I can't believe it - just 5 seconds from the finish - why couldn't I have collapsed afterwards...haha......and Why Me? Nothing ever runs smooth. BUT - I DID it!! The whole run took me 3 hours, 1 minute, and 59 seconds.

I later found out that there were not 21,000 runners - but 13,917 and I came 13,871, 46th from the last.


So, here I am in sick bay being monitored. My medal came to me, as I was unable to collect it from the finish. I put on a happy smile and consume the complimentary hot chocolate given to me. Sometimes, there are perks to being ill...haha. The medics couldn't believe that I had actually done the run, and were amazed and said I was an inspiration.



Well, I have learned that this challenge I set myself for year 3 being alive, was definitely ambitious and one that I almost never finished. Never again!!



BUT...now I have had a few days rest, and have been discussing doing another run! YES - I am mad, but, a shorter distance 10k not 17k! Also, roll on year 4 being alive and to a new challenge that I am still deciding what to do........



Lastly, somebody - and I have no idea who mentioned me whilst Channel 5 covered the run. I was informed that the message on the screen was something like, "every year Double lung transplantee Justine Laymond chooses a challenge and this year it is to run the Great South Run"........I have asked and even posted this headline on Facebook - but still clueless - and wish I could thank whoever did say this!



Well..thats it.......Jussie over and out, a hard year of sporting challenges to raise funds for LAM. My link is still open for any last pennies..lol



MY Justgiving Link



Thanks for everyone's donations so far, I have exceeded my target! And thanks for everyone's support of messages spurring me on, it all helps me.



Over and out, love you all x x

1 Week Before Bupa Run

Monday 19th October

This is it!!! 1 week to go...until the Bupa Great South Run in Portsmouth, 10 miles or 16.6k! Am I mad? YES YES YES ....and another..YESSSSSSS........geee I'm full of a mixture of al emotions.

Excited, nervous, anxious, happy, sad, can't sleep well as all emotions getting the better of me.

I'm missing, Ida Victor - with whom I met in 2005 when I was very ill and when I was told I had a rare illness. Ida told me, "acceptance is the hardest thing, but when you accept - you can move forward"...and that really helped me with my own diagnosis. Ida lost her battle with Lupus.

I'm missing, Marc Prosser who died earlier this year - so unexpected but his CF took hold of him :( and who was going to be doing this Bupa Run with me.

I'm missing, Melissa Arnold who also suffered from LAM - like I did and never pulled through.

I'm missing, Julie Teed (who had a rare illness) - who I corresponded with in Guernsey - but her call for lungs never came in time.

I'm missing, Lynn Ashton who recieved a double-lung transplant - but sadly died some months after. Lynn was needing a transplant after her lungs got damaged from smoke in a fire incident.

I also miss many other people - but the list is too long to go on. So, as you will realise I'm doing this run...not just in memory of those I miss, not just for the fact that my donor gave me life, but also for the fact..that I'm determined to raise as much money as I can for LAM and help research find a cure for this horrific illness.

Here is the link below - even if only £1.00 - a little will go a long way - thanks x

Justgiving Link

As to my training for this, it was going well up to a point..then I was doing too much and not feeling too well in myself. Quite a few people were concerned about me, and telling me to stop, slow down, rest etc - to which if I'm honest I ignored at first. Then, I really felt pain and I struggled at a running class (2 weeks ago), and knew that I DID need stop! So, for the last 2 weeks until now, I haven't really done anything and just saving all my energy for this Sunday. I have no idea how I am going to do this - it's not easy, and I do still struggle with breathing whilst exercising (some people have seen it for themselves).

Anyways..onwards and upwards. I'm hoping that Imi, will still be able to support me at the run as recently she has been recovering from Swine Flu.

I have had my sports top "edited"......by which I mean on the back I have had the words " I've had a DOUBLE-LUNG transplant" in luminous BRIGHT PINK printed on the back...hahaha.....so I'm hoping some random strangers on the day..will pat me on the back and keep me going with words of encouragement...x x x

Right...that's it for now..have a happy week everyone. Keep well and smiley...and if you do donate - thanks sooooo much,

Jussie over n out. Much love to u all x x x

September - OH what a month!!!!!!!

I have written a massive blog for the whole month of September - whereby SO much has happened, and finally I have been able to write up all my adventures! October also has many happy things....and that blog will follow shortly.
Happy reading lovely people x x x


25/09/09
Essex Achievers Awards Night

WOW!!! That is how I must start this! What a night, the Essex Achievers Awards turned out to be. I was nominated a while back for an adult category called, "Against all odds" for adults who face major difficulties with courage/determination giving inspiration 2 all around.At that time, it was great to be purely nominated and I felt I had already won just to be recognised within my community. I continued with my day to day life, in the world of training fanantic, crazily busy Jussie and thought no more of it.

The actual night, was now upon me and my parents joined me along with my great friend, Fran, who as you know has spent a lot of her free-time assisting me (pushing me - with my training...even when I really have had enough.."just one more time Jussie" lol).

The whole evening was quite emotional, especially hearing the children's categories, and to be honest we are all winners just being there! I never expected to win overall...and as names were being mentioned as:- Commended, Highly Commended.....I kept expecting to hear my name. But then I realised after the last Highly Commended person was mentioned - and NOT my name, that - I had won!! Oh my goodness, I was shaking..and as post transplant patients know - shaking is a side effect of the medications. Fran checked if I was ok, and I said - that I was actually shaking (and not from my meds!!).

My name was mentioned, and I went to the stage to collect a great trophy and hear Dave Monk (Radio DJ of BBC Essex) say my story. The opening line was, "3 years ago Justine was planning her funeral.....gulp....I tried so hard not to cry. I was all smiles, until I returned to the table and balled my eyes out - emotion getting the better of me and quite amazing how FAR I have come and all that I have achieved with my campaigning on organ donation/LAM and fund raising for the last 5 years.
Also, that even though I struggle sometimes with my breathing doing exercise, that I still continue to set myself new challenges and defy the odds, like the Great South Bupa Run coming up on 25/10/09!














I think my parents were proud of me too that night.














All the other nominees for Against the Odds category - but to be honest, in my eyes - everyone was a winner!

Woohoo!! This is for - my donor - thankyou for giving me LIFE to continue!



















Feedback from Facebook after I posted on my status/added photos of the night - that I won
Laura Katherine Cullum, Emma Still, Rich Neilson and 19 others like this.
Sandra Ramskill
"congratulations" well deserved. xx
Andy Healy
xxxxx :)
Nelson Freytes
booooooyaaah! that's american slang for congratulations!! ;)
Marla Dreyer Hamlin
YOU DESERVE THIS!!!
Cheryl Buxton
Congratulations x
Hamish Barrie
well done you great to here xxx
Hamish Barrie
hear even but you know what I mean spelling not being my strong card
Eloise Roberts
wow thats fantastic! well done! x
Sarah Milne
YAY well deserved x x x
Karen Swift
Great pics.... well deserved and well done again...
Jim Lee
Awesome! So proud of you but then I always have been! x
Hugo Camacho
well done baby welllllllllllll done
Christopher Sidney Richardson
Well done Justine U Deserve It !!!!!!!!!
Stephanie L Gonzalez
It may be to your surprise, but not your followers. You are a living inspiration. Thank you for the hope you give and the joy you spread.
Gage Hanson
and you are surprised because? i sure aint! you deserve it babe...
Michelle Martin
I've seen you pre and post transplant and trust me babe you deserve this! xx
Sonya Pettigrew
wow!!!
Clair Hemmington
well done justine. You inspired me before my tx and still do now. xx
Donna M Williamson
You desrved to win xx Congratulations xx
Dawn Atkinson
Well done you!! Many congrats xxx
Annie Sekowski
Well done Justine! Very proud of you.
Emma Still
well done xxx
Laura Katherine Cullum
welll done hun!!!! thats amazing. marc would have been so proud of you xxxxxx
Rich Neilson, Donna M Williamson, Tim Gibson and 13 others like this.
Mark Roylance
well done
Jeremy Kalp
Very well done hun, you deserve it
Claire Lamborn
well done justine, couldnt have gone to a better person
Laura Perry
Well done jussie x x x
Laura Kirschner
well done, you really deserve it! x
Stephanie L Gonzalez
Wow -- Justine, that is so wonderful. You must share the news with the LAM list.srv!!! They will all be so proud!
Kathryn Flynn
And you have earned it Justine. Congrats!
Nina Volden
,well done, you really deserve it! Hugs from Norway.
Elizabeth Hosford
Fantastic stuff Justine. Well deserved and now we need to party!!!xxxxxxxx
Andy Healy
Oh Jussie that's wonderful!! Well done, I'm so proud of you and so happy that we are good friends... BIG ((((HUGS)))) to ya my lovely groovy buddy XXXXX :)
Crystal Craig Windsor
WHOA!!!!!!! Congrats
Nicki Torrington
That's fantastic! Well done :)
Michelle Briscoe
WooHoo!!! Congrats!!! You deserve it!!! :) :)
Kiri Kalp
What can I say you deserve it so very very much. Very very well done you are an inspiration to everyone. love you lots
Kathryn Crawley
Amazing ! CONGRATULATIONS ! XX
Karen Whitham
Congratulations hon...so very pleased for you xx
Imi Spencer
Massively deserved, ur a LEGEND. Well done u xx
Karen Swift
Congratulations.... well done! xxx
Louise Lawrence
O sugar...u more than desrve that...enjoy the moment...I am very chuffed for you...u well earned that xxxxxxxx
Charlie Allen
congrats hunni im happy for u bbz x
Lynne Carr
Congratulations Jussie...well deserved!! :D XxX
Andrea James
Really thrilled - thank you for being such a great ambassador, and getting the message out there. xxx
Tim Gibson
Congratulations!!!
Grainne Morrissey
Congrats!....u deserve it x
Deborah J Taylor Smith
Congrat's
Frances Bellamy
well done Justine, we are so proud of you! you well deserved to win!

WOW - thanks everyone - totally touched by everyone's support and fabulous messages.
I wasn't sure whether to upload these messages or not, then decided I would as if ever I have a down day - then I can look at this page - and be reminded by how proud people are of me - still to this day. Also, that all I do - does has an impact on other people here and across the world.
A great night....great inspirational stories by everyone nominated, and few more tears shed on my journey back home x x


06/09/09
Harefield Fun Day Fundraiser

A day to celebrate and raise awareness of people who have been given the gift of life - like me. Supporters through to families/children, doctors/nurses - anybody and everybody associated with Harefield. To also help with fund raising for a new MRI Scanner for the hospital. This event happens every year and I truly like being here and catching up with other transplant friends, and seeing doctors/nurses/hospital staff who were/have been part of my journey.

Today was great fun as lots of my family attended to support in with the fun and help with my stall. I am no longer making jewellery/cards (interested in focusing on my art more/exercise training) and was wanting to flog all!! I was intending to do the 3mile run, but after a weekend of driving lots and training heaps - I decided I was too tired and simply better that I enjoy the day and chill :)




Thumbs up Jussie and my stall











Lisa Muscutt and I (both double-lung chicks) and next piccie with my Mum x














Thankfully, the weather held out and the sun beamed down. A lovely day for all :)





29/09/09

Charity Night - Fundraiser for Harefield Hospital

A friend of our family, Brian Selwyn Barnet has all year used Harefield Hospital as a charity for for his local golf club where he was Captain of the Old Fold Manor Golf Club.
Throughout the year various events have taken place to continue with this fund raising.

However, tonight, was a special occassion - whereby a representative from the hospital, Don Bailey came to make a small speech about the funds assisting the purchase of a new MRI Scanner. I was also there, to make a speech about my journey before and after my transplant, and how fantastic the team were/are at Harefield.

After my talk, I was overwhelmed by applause and sat down - still to clapping. Then an auction followed shortly after and amazing how much people were willing to donate to Henry the Hoover..haha. Also, some great trips away - thank you to everyone on the night, and a grand total that evening raised, £3,500.
A couple of photos from the night, and thanks to Harefield Hospital for all the balloons, which as you can see were placed on each table. I also left donor leaflets/cards (for people - if they wanted to join the organ donor register) and information on Lam for people to read about this horrific rare lung disease. x x















Thanks everyone - yes, it was a longgggg read. Thanks for keeping up with all my news. Big hugs, happy smiles, and to many more gifts of life! x x

British Transplant Games '09

Thursday 30th July
Well here I am on arrival in Coventry for this years British Transplant Games, wearing my representative tracksuit for the Harefield Hospital team. I have been building up to this event as most of you know with heaps of training to improve my fitness and lung function.

My training has been intense with various exercise regimes (5-6 times a week), and at times my lungs did struggle, but, I was determined to keep going! I found it hard to sleep the night before..maybe a combination of nerves and excitement.

My friend, Jason (also competing in the games) was driving - just aswell as I would have needed many coffee pit-stops. On arrival, I felt all flustered and had about an 1.5 hour to get ready, unpack for the opening ceremony parade through the city centre. There were over 1,500 transplant recipients, relatives, friends and visitors for this and what a spectacle it was to see all the other hospitals and their teams taking over Coventry..haha. Lots of media attention too...and little did I realise that I including other team members had a photo of us all the next day on page 3, in The Coventry Telegraph (but to see photo now...scroll along the bottom to view photo number 10).

It was such a buzz to be back here again to see friends I had made over the last 2 years, and to get talking to new people too. Also, chatting face to face with people that I had just corressponded with previously through Facebook. My evening was spent drinking lime and sodas after in a bar, then back to sleep.


Friday 31st July
Oh dear....another sleepless night. Just adrenalin keeping me going.....thanks to my body being able to do that!! On my way up to the games on Thursday, I had a call from BBC Essex Radio asking if I would do a live interview for today to speak about being at the Games. At 10.30am (after eating a healthy breakfast)....I sat patiently in my room waiting for my mobile to ring. And.....so it did, and I was live back on air - only after being on the radio station there a couple of weeks back. It was great, and another boost to raise donor and LAM awareness. The link for the radio interview I will get shortly and add to my Media Articles 2009.

Also, please all remember that everything I am doing until the year ends is all for LAM Action. Here is my link if you would like to assist with a small donation - thankyou, JustGiving Link. I am hoping to raise £1000 and my link mentions all I will be doing this year to achieve this :)



Ok..ok...so here I am later in the evening for a 70's themed disco with two friends (Jamie and Mark). As much as there are competitive sporting events, we also have time to party too. Woohoo!! I danced most of the night, then decided to try and sleep - ready for Badminton the next day.





Saturday 1st August
Yay!! I managed to sleep for 5 hours solid, and I felt ready to start my day full of zest and a rested body!! I was excited for badminton today, and was quite amazed as to how many people were competing in this sport. All sports are split into age groups no matter how experienced or not you are. I really do enjoy meeting and making new friends, and there was definitely the opportunity to do this here!

I decided to have a "knock up" as it's called, to warm up for a little bit, then decided to have a breather before I wore my self out..lol



And as I pose for a silly photo, the gentleman walking up behind me is, David Walker (whose son has had a transplant too). Judging from David's reaction....looks like he is about to tell me off to stop having a laugh..lol....






And here are the badminton champions from Harefield Hospital..Woooooo!!!!! I managed to get a Silver medal!!!! Left to right in photo:- Justine (me), James Baxter, Lisa Innes, and Paul Walker.

Still feeling hyper and seeing 3 lads playing after games were over...I couldn't resist to gatecrash and join in with them. Nothing to do with the fact...they were handsome or anything..lol x x

So after being victorious, a night in the city centre was needed. And what better than to have a good curry!!! MMMMmmmmm..yum! There was about 30-40 people at the restaurant and we were quite loud..oops! Shame, for all those couples who wanted a quiet meal as we literally as we literally took over! By the time I got back to the room and ready to sleep, it was midnight (and I needed charge up ready for the athletic events the next day).

Sunday 2nd August
OOOOOOoeeerrrrr...today is my day, long jump, 100m sprint, 200m sprint, and the 100m relay race (which I later decided to leave as was tired and my lungs had done enough by that point). So at 9 am I was to jump......LONGgggggggg with 3 attempts. Well, I DID jump and didn't touch the part where you get disqualied as a foul (if your foot marks the plastersine).




I decided to upload this photo, as I look ridicoulous..........not sure what I am doing....but I thought it was a fun action shot! So laugh once only please :)

I did really well in long jump. I believe I came 5th out of 5 people..haha. Oh well, it not all about winning - but simply taking part and being alive still to do! I do enjoy long jump and will get more assistance to continue training in this, as I feel as much as it is fun, I would like to get a medal next year. Or maybe, some more silly action shots will follow again instead in 2010.

Well after coming last in long jump, I managed to win 2 bronze medals in both 100m sprint and the 200m sprint. I managed also to get a PB in the 100m of 18.8 seconds (my speed has improved by 2 seconds). I still have a long way to go to get to World status standard. But, I am still finding my feet so to speak in the games and where I can train to get to a proffessional level. I will try new sports to see if I may have hidden talents where I never knew possible. It is all trial and error, and also as to whether I actually enjoy them too!


This photo is from the 200m race - medal award presentation (with Ayesha as the silver winner and Diane with the gold).

I must stress again, that it IS taking part that counts. But.......I can't help it if I am determined to also achieve a goal and get to the World Games. I guess, even if I never do - I am still extrememly happy and grateful for my gift of life and love the games and seeing all my friends every year. And, the fact that I can breathe!!!




What everyone looks forward to, is the last night being the Gala dinner - food, drink, and plenty of dancing!! A time for all of us to unwind and celebrate, rejoice the games until it happens all over again the following year. This photo is from Harefield Hospital's athletes and supporters (family and friends) posing after it was announced that as a team we won the "Tesco" cup trophy - which was last won by us 5 years ago. All the medals won amount to a number of points - to obtain this trophy - and guess we just blew away all the other hospitals..lol x x


This photo here, depicts what I am alway about, "always smiling and always will"- dancing the night away, happy to be alive, and just loving life! Long may my lungs breathe and I hope to attend many more Transplant Games and one day - achieve a GOLD medal!!
(pictured here with friends Liz and Jamie).

Thanks to everyone who has supported me along the way and for all the well wishes, good lucks and so on. Thinking of my friends that lost their battles on life - sleep easy, especially to my dear friend Marc Prosser recently. Also, to my donor - I hope you are proud of me. And, if anyone does wish to make a donation to Lam Action via my link - thank you in advance.

Well, that about wraps it all up - I have one more day of rest before my training resumes for my goal being a 10mile run for the Bupa Great South Run in October...so.....going to make a cuppa now.

Big hugs to you all - Jussie over and out for now x x x

Justgiving Link

Hi everyone,


Hope you are having a good week so far.

If you have a couple of minutes please to read my link (below) about events I'm doing this year to raise funds for LAM, that would be appreciated.

If you are able to donate, the amount will assist research to fund medical trials and drugs to slow down the progression of LAM, until a cure can be found. As LAM is such a rare disease and not widely recognised, there is a shortage of monies being donated.

This is the reason why I am doing this, to help women presently diagnosed with LAM and of the future so that no one suffers to the extremes like I did. Thank you x x

Justgiving Link

Many thanks all

Happy smiles all round x x x

3 weeks!!

Mega quick update, as I have been without my laptop for 3 weeks. The local library has been a blessing - for the "one hour" a day allowance..lol.

Well, the much questioned magazine - is the BOOTS, health & Beauty magazine page 93. Boots are now making their advantage card also a donor card..YAY! It's an article using my story and little photo of me..aww.

3 weeks until my UK transplant games....oooooooo...errrr....Time flying too quick!!

And, can u believe it - today is my 3rd year of my transplant anniversary!! My life was saved 3 years ago - today - WOW! I still can't believe it!

Also, in my local Essex Chronicle this week (page 13) and I will update link soon.

And, I will be doing a LIVE radio interview about 9.10am on Friday 10th for BBC ESSEX :- 103.5 or 95.3 FM or online at bbc.co.uk/essex.

I will also be celebrating my 3rd year transplant tonight with my family and again with some close friends this Saturday at Thorpe Park.

To sad news, about my dearest friend, Marc Prosser died this week. I am so gutted and cut up about this. Marc was going to run with me in my first ever 10 mile marathon this October. Marc had Cystic Fibrosis and his decline was unexpected and extremley rapid. He will be missed by many. I miss ya Marc, and will run in your honour, along with Imi who is also running with me at the Bupa Great South Run.
So..to round up....have a great week everyone. Please do not moan about silly things, and really appreciate your life - take nothing for granted. Thanks x x

Can't beleive I am still breathing with someone else's lungs.

Bye all x x x

Oops Oh so quiet

Where does time fly away too? I realise I have been quiet since my last post in April...so decided to leave a little update...and will write more soon!

Exciting things are happening soon - my 3rd transplant anniversary in July (9th) - and will actually celebrate this on 11th. The British Transplant Games for 5 days in Coventry (end July/beg August).

And soon to be part of the 'Gifts of Life' photographs/project by Sarah Milne...watch this space.

And hopefully something even more compelling for a well known shop in their magazine (which will be all across the UK), for July/August edition. I will say more soon (early July....so be patient until then....hahaha).

Last weekend, I drove to Nottingham for the annual LAM Action meeting - which was great to see existing and welcome new Lammies. Although I would rather no one has this disease....but maybe research is positive now with early diagnosis...better that way and to be able to offer hope and medical trials to slow down the progression of Lam. Instead of 10 years for me - for my diagnosis and suffer horrendously! It is always a positive day and lots learnt, and also simply lovely to be able to chat to other women - not many of us - still a rare illness, and we support each other.

I'm still training hard for the transplant games...then will need continue after them for my 10mile marathon in October. Then, I will need a holiday!!!

I will organise a Just Giving Link soon to detail all my events this year and other elements to assist fundraising for Lam Action.

Going back to sleep now.... as I have a run class followed by long jump coaching in not many hours. And before I sleep again (why I wake up during the night for few hours then fall asleep again...blah..)
And, thanks again to Fran Cliffe who has been helping coach me for sprinting and long jump (I have never had any assistance like this before ever) and really appreciate the time Fran puts in. I am learning heaps...and whether I win or not - I am grateful to feel more "pro" and look forward to the games to put in all my hard work and Fran's coaching tips.


xxx

Cruise Holiday April '09

Woohoo!! Here I am on the ship (Tuesday 14th April) in Palma, after travelling for an overnight stop at a Gatwick Hotel. Then the next day flying into Palma to get a coach to The Island Star cruise. To say I hadn't slept the night before - isn't a lie....I have been so excited about this holiday, and adrenalin running all through me! Even when I touched down in Palma..........just kept going.

My first day was spent on the ship arriving in time to eat some lunch from the buffet. There were 2 restaurants - both buffet based (the other a la carte - which I never used). Oh my goodness..how much food!!!!!! Everything and anything from hot to cold selections..fruit, salads, desserts galore, cheeses, and so much more. Lets just say I ate more than a have done in a lifetime and prob gained a couple of pounds. Oh well, was a holiday and I don't eat like that normally - so was a real treat for me (for that week). I also explored the ship on 12 levels with lifts!!! A casino, shops, swimming pool, spa, beauty area, gym, internet cafe, 8 bars, 1 theatre, nightclub, library, and then all the cabins, and much more.... WOW! What a mini adventure!

There were approx 2,500 passengers and about 550 employees onboard from all nationalities across the globe.

I spent the evening watching a show with the singers/dancers and then onto a welcome party. I rarely drink, but treated myself to two cocktails - Baileys banana colada (a frozen daiquiri) and starting swaying - or was that the ship!!?? lol

My cabin was an inside cabin - and I liked that, as wouldnt want to see the waves by the window! Generally I slept well and the bathroom was not bad with shower facilities. I didn't notice the ship rocking in the night - more so just in the evenings whilst watching shows whilst travelling from one port to another. At times, it was a bit disorientating - but you kinda get used to it.

The ports travelling into over the week were:- Palma, Cagliari (Sardinia), Naples, Civitavecchia (near Rome), Ajaccio (Corsica), and lastly Mahon (Menorca). I decided to go on a shore excursion every day to explore the cities upon arrival and other cities to get a feel for the country/city.

Wednesday 15th April - was spent at sea

Oh...you may be wondering who I travelled with? Well..I went with..just me! It was something I wanted to do on my own and to be able to experience more of life thanks to my donor. I did speak with a lot of people including crew onboard who all said how brave I was to go on my own. I explained, that I didn't see it as brave and after all I have been through in life - was an exciting adventure and that I have travelled on my own too. There were a couple of times I did get overwhelmed with emotion that I could do this and how great my life really is!

On Thursday 16th April, I arrived at Cagliari (capital of Sardinia)
Cagliari was a very pleasant city, lots of hussle and bussle and great to explore other cities which included, Bonaria and Castello.
It was great after a day at sea to finally arrive at a city and get a chance to go off the ship. I wanted to send some postcards and went on a mission to find stamps to which I did within the last few minutes I had left and post them!! So those who received - be grateful..lol.

Also how wonderful for warm weather too! Generally it was quite hot whilst away , with a couple of rainy/overcast days. But, I did not let the weather dampen anything and even walked in the rain!

That evening, I watched a show called, "Magic of the Musicals" to which different scenes were done from mainstream shows such as:- Phantem of the Opera, Chicago, Les Miserable and so on - which were absolutely awesome!!!!!! Then a late night performance with a singer/comedian called, Jayne Curry.
I never used the nightclub on the ship - even though I probably went to sleep each night about 12-1am. I can club anytime, anywhere...besides, I wanted to be up early each day to have breaky and explore each new city upon arrival!!

On Friday 17th April, I arrived in Naples
The day I had planned was to visit Sorrento and then go onto Pompeii. I have to say that Sorrento is such a pretty city and has lots of cute shops and plenty of cafes..but no starbucks (lol). Lots of tiny streets and side shops...so much to explore. Also, a great base to go onto Pompeii, or the Amalfi Coast or even the island of Capri. Somewhere, I would consider coming back again.....well...that was until I went to Corsica and Menorca! Here is the entrance to Pompeii, and there was so much history inside...kinda felt freaky, visiting the remains from an earthquake in 79 AD by the mountain Vesuvius. It was a sudden eruption of ash, cinder, lava mixed with mud that flowed and took the residents by suprise, who were killed trying to escape. After the disaster, Pompeii remained buried under a layer of ash more than 6 metres deep, a city that was suffocated to death. The tragedy came to light more than 2 centuries ago...and here I was in the heart of it all!













The other photo, is of a plaster cast of a body left from the volcanic eruption, and I saw many including a dog! This was quite sad as the poses were caught obviously illustrating the true horror in these times. I felt like a right history buff, and even bought a book on Pompeii with a dvd..hahaha...Saturday night TV!!! (not..but, mid-week). It was fascinating seeing places like their:- bakeries, houses, shops, prosititute parlours (even in those days too!), and much more to feel how the city was before the sudden fate of it all.

My evening back on the ship was spent watching (not for long) a George Michael tribute act (not my cuppa tea) and watched others play bingo, the casino!! Time to sleep - for the next day's adventures.

On Saturday 18th April, I arrived in Civitacchia
Originally I was planning to spend the day onboard the ship as there is plenty to do and heaps entertainment/activities. But, I decided to re-visit Rome and spend more time at the Colosseum (which I had seen 2 years ago when travelling through Europe - but never went inside). I was very happy that I did decide to do this. WOW. The Colosseum is breath taking, and amazing to think about all the history of that time. How people enjoyed watching people being eaten by lions or other animals as entertainement and how men fought with their lives.














From the Colosseum, I walked to another landmark called the Pantheon and then onto Piazza Navona whereby a political demonstration was going on. Not sure it was the ideal stop...but coconut ice-cream was beckoning me!!! Lastly walking through all side streets (getting lost always happens to me) to Castel Sant Angelo (castle) with minutes to spare before the coach was due to take everyone back to the ship.
The evening was spent being entertained by a comedian called Maxwell Plumm, and laugh a plenty that night!!

On Sunday 19th April, I arrived in Ajaccio
Ajaccio is in Corsica, a French speaking country - and mostly consisting of mountains! The best views are from the top of the mountains and included a scary coach ride on very narrow roads to get to a point to then go onto a mini train ride (check out the train, it was like Bob the Builder had just made it..hahaha) through the mountains. It was a bumpy ride, to say the least (gulp) and a great way to see the spectacular views! There were a couple of stops, wherby walking higher up to see even more wonderful sites (as this photo below shows, which is the Lake Tolla).



















Next stop was a trip to a honey farm in Corsica..mmmmm....YUM!! I love honey, so was very excited by this, and was able to try many different types of home-made honey out there. Yer..yer....I did end up buying 2 different types and have already opened one since being back home. The evening was delighted with yet another singing/dancing show - wow - these singers/dancers are talented. I felt like I was in the West End! The crew had their own late show called the "Shippendales"...hahahahhaha...not quite the muscle hunks I was expecting - but puny wimps, maybe one was ok - but the rest definitely put a smile across my face. Yes, I have photo evidence (but not for here..lol).

On Monday 20th April, I arrived in Mahon


WOW!!! And I thought Corsica was beautiful (kinda fell in love with the place, and would love to re-visit). But.....Menorca was truly stunning, very small island, tranquil, breathtaking sites, and just look at the crystal clear waters glistening in the hot sun!!! My tour that day took me to Fornells (a fishing village), and then to Monte Toro the highest peak in Menorca. Then to another village called, Torralba and lastly Binibeca ( a very busy day!). My last day too before heading home...poo hoo.

However, I also felt ready to come home...need to eat better and start training again ready for my Transplant Games in July.





On Tuesday 21st April
Home Sweet Home!! After a long day travelling and my drive back to Essex, and a much needed stop for milk - to have a proper cuppa....arrived shattered and ready to sleep! I felt a bit strange with a swaying feeling, as if still on the ship. But, I'm pleased to say after a day's rest - I am back to normal!

Now a couple of days have past since being home, and my life is getting back into action. I definitely love travelling and exploring different countries...and want to go somewhere different again later on in the year. Go Jus..Go!!!!!

Sadly, whilst away a friend called, Petra who also had a lung transplant (at Harefield Hospital) passed away, and I was very saddened to hear this news on my returns. R.I.P lovely Petra. All I do in my life is in honour of my donor, and my friends who haven't been as lucky as me. I want to live a long time, and achieve many things in my extension on life.
Last shot to end my blog...a windy day at sea!!!

Much love to you all and wishing my friends waiting get their gift of life soon, those poorly to get better, and my friends I have lost......always thinking of you x x x x

Head Strong

Like my new look?? lol. Well, not so much new look - yet again new hair colour.....for the short term until the next change.hahahhaha. Those who know me, know my hair changes colour as often as the seasons change!!

Well, the last four weeks - have been a time of reflection for me. Realising how wonderful and prescious my life really is. How very grateful I really am. How sad it is that some of my friends haven't been so lucky with their journies, and how those waiting for their life-saving transplants are getting fed up waiting for the call. Also, sometimes how I get stronger in unforseen circumstances and turn any negative into a positive. Maybe, I should be a speaker in this..lol.

Sometimes, I suprise myself with my own strength - it's like I can just have a moment or two thinking/expressing to those close to me...then take the attitude.."right...come on Jus...get with it..things to do..people to see....goals to achieve...no time to worry about silly nonesense brought upon by anyone".........and off I go..full steam ahead!!!!!!!! Woohooooooo!!!! I really am so happy, and nothing or no one will deny that from me!

So....as for "enjoy the time you have left"..well, I have made my feelings pretty clear in a previous blog. I am going to live until I'm 100 and that's that..hahaha!!!

Well, my life is all about achieving new challenges too, and last week I tried a gym challenge set in 3 levels of difficulty. I went for the beginners (which I may add - was still extremely hard). Al (the personal trainer), told me, "this is going to be the hardest thing that you will do in your life"....and he wasn't wrong!!! But, I was determined to keep going even at times when I did get breathless - but wanted to also keep going! The challenge was co-ordinated by both Fran and Al (Alan) who are both helping me towards my training programmes.

The Challenge as below consisted of:-

ROW - 750m
DEAD LIFT - (7.5kg per side on black barbell) x 20 reps
PRESS UPS - x 15 reps
TREADMILL - 250m (0.25 km)
FLOOR WIPERS - (7.5kg per side on black barbell) x 10 reps
CYCLE - 750m (0.75 km)
PUSH PRESS - (5kg per side on black barbell) x 15 reps
BURPEES x 10 reps

Definition of a burpee:-
Start with hands on the ground in front of your feet. Keep your back straight. Then Kick feet out behind you into the top of the push-up portion of the burpee. Your body should be straight and tight in a flat plank. Push up into the top of the push-up position again. Then Jump your feet up to your hands into your starting position. Finally, Jump into the air and clap your hands overhead so that your ear is exposed in front of your arms. Your feet should leave the ground.


I achieved this in 17.54 seconds, and will be repeating this challenge again this Thursday 8th April, and I'm hoping to improve on the time as well.

Ok ok.....think I have waffled enough. I hope you all keep well and smiley, and hope transplants happen for those waiting whilst I'm away on my holiday next week. Thanks for eveyone's continual support and recently, lots love to you all. Miss Head Strong x x x

The Sweet Escape

I am absolutely shattered now from driving 2 hours each way, spending the day at hospital and seeing a few mates! There is no rest in my life..all go...go go!!!!

The first procedure is to get my blood tests done, and in the last blog I said that after nearly 3 years of them...still clueless. So, I made a point to find out what and why there were doing..lol. There are 8 blood samples done in total being:-

1) a full blood count - which checks for infections and if I am anaemic or not
2) a sample to check my kidneys are working
3) a sample to check my liver is working
4) a sample to check my glucose levels, whether my sugars are too high or low, and for diabetes
5) a sample that checks for more infections (a specialised test..!!??oooer..lol)
6) a sample that checks my tissue type, and my anti-bodies (this is done every 3months)
7) a sample to check whether my blood is clotting
8) and lastly a sample which checks my medications - that they are still working fine, or whether levels need to be adjusted.

Then weight, blood pressure, temperature, oxygen saturation levels are done.
Then a light walk to get my lung x-ray...and I can't seem to go anywhere without bumping into staff that I know there..have a good old chit chat and some giggles...Oh..better get my x-ray done..tee hee!!
Then off to the "lung room"...as I call it, where I have to breathe into a machine to get my lung function results. As much as I exercise, this is really hard work.....my first result bizarrely was ok, and the other 3 declined each time. I was running out of puff, and had had enough!! I actually felt good for the first time in ages after doing my lung function (slight decline from last visit, but nothing to worry about).

Ok Ok tests all done..now I was off to meet a mate for lunch, Carrie in Uxbridge - where I ate the biggest jacket potato known to man with tuna mayo and cheese......yum!! Hopefully next time, I will get to meet with Liz - hope you get better sweetie. Now my drive back to the hospital feeling full and wondering what my Doctor would say......But, I still needed and wanted to see Sally who about a week ago had a double-lung transplant, and Grazyna another LAM lady staying in for a short while.

It was great to meet Sally, and going great guns!!! Just look at the photo at the top of the page!!

And fabulous to see Grazyna....both Grazyna and I last remember seeing each other when we had our oxygen tanks, and it was so nice that we were both without oxygen and tubing! Woohoo!!!!

So after more chats with other patients and staff.....time to get my results, and I flew away with flying colours. Yippy!!! My next check up is in 6 months time, which will be slightly after my 3rd year annual MOT....which will require more tests. But, I am delighted to be leaving hospital feeling happy, and ironically a tune played on the radio called, "The Sweet Escape" by Gwen Stefani. Those who have been following my diaries from my website may remember how this song played a big part in my life every time I went to hospital in the early days...as I feared rejection. So.....loud as you like I was singing away in my car - no care in the world how stupid I may look!!! Lol

Thanks for all the lovely messages, and thanks for still being interested in my life post - transplant!! x x x