Tuesday, 10 November 2009
Its been a whole year since my transplant (this time last year I was still in hospital recovering)... If you have been following this blog for a long time you will have read about my ups, downs, triumphs and TEARS!
You will have read about my struggles with dialysis, life at university, my amazing family, my campaigning and of course my journey to transplant!
However I feel the blog URL http://lifeondialysis--waitingforthecall.blogspot.com/ isn't appropriate anymore! I will always remember my time one dialysis and my time waiting for the call but it just doesn't fit with where I am in my life right now...
So its time for a change.... I have a new URL a new look... so why not pop on over to my brand spanking NEW BLOG!
It will still have all my old postings so you will still be able to look back at them....
Wednesday, 4 November 2009
I've had some lovely presents and cards and even got a cake off my Mum and Dad! You can see pics of them here.
The of course on Saturday it is the Live Life Then Give Life Abseil... me and 42 others (a few people have dropped out) will be abseiling down the 100ft Leasowe Lighthouse! There is still time to sponsor by clicking here! Thanks so much to all those that have sponsored already, I'm so pleased I am able to give something back to the charity that have helped me so much!
So going back in time...
Yesterday was a busy day! I went to get my hair cut (got a really short bob) and coloured (I've gone a really dark dark brown, on the advice of mum not to have red hair on my grad photos!)
I then came home and went to the gym, I think the session went well... I passed on the ball this time as my stomach was still hurting from Sunday!
So I did 20minutes on the treadmill on a higher speed setting, 3 of these minutes were jogging!
I did 20 minutes on the bike and cycled 4.5km.
I did 4 laps of the 200m track walking and 1 lap jogging.
I then went out for a couple of drinks in town with a few of my mates, I was originally not going to have a late one, but I only came in at 2.30am this morning so later than I anticipated!
I also had phone calls from the press office at the Royal Liverpool Hospital who want to do a story about me to coincide with the launch of the campaign, to hopefully appear in the Liverpool Echo in the next few weeks. The Manchester Evening News also contacted me but regarding doing a story about me graduating so that will be in the paper sometime this week!
I think thats about it for now! Wish me luck for tomorrow, I hope I don't trip up on stage.....!!!
Monday, 2 November 2009
Anyway back to today... firstly, my stomach is soooo sore today, its from all those sit ups on the ball yesterday!
Today is the launch of the new NHSBT campaign...
New research reveals the gap between what we would take and what we are prepared to give. While 96% of us would accept an organ if we needed one, only 27% of us have the joined the NHS Organ Donor Register (ODR).
Many of us (45%) have the best intentions to sign up to the ODR and commit to donate our organs for transplantation after our death, but just haven’t got round to it.
While some people are still unclear about how to register, a significant proportion of us (17%) are ready to act now. A further 19% need to involve their family in the decision. Research also shows a disparity between those who think they’ve already signed up to be an organ donor – 35% as compared with the actual figure of 27% (16.5 million) on the ODR.
The campaign aims to increase significantly the number of people on the ODR, asking what we would do if someone we love needed an organ: if we would accept an organ, shouldn’t we be prepared to give one?
Welcoming the campaign, Health Secretary Andy Burnham said: "Each year, organ donors transform the lives of thousands of people. But despite this, three people die every day while waiting for a transplant. More people are signing up to the Organ Donor Register than ever before, but many more are needed.
"Most of us support organ donation and the overwhelming majority would take an organ if we needed it. I would urge everybody who supports organ donation to show it by signing up to the Organ Donor Register and discussing their wishes with their families."
You may spot TV adverts, hear radio adverts or see it in the press... lets hope all this gets people talking! If you haven't done so already... check out the new website to encourage people to sign up. It is very hard hitting but I think it is what people need to see, this is reality and it is happening to 10,000 people out there RIGHT NOW, and we can all do something about it... people are needlessly dying and we can do something to stop it by Signing up to the Organ donor Register!
I tried to get this message across on a tv interview I did today for Channel M (a Manchester TV Station)... You can watch my interview if you follow that link. The new NHSBT advert was shown during the interview... you can see it by clicking here. It depicts a young man with Cystic Fibrosis detriorating in front of his mum while they are watching tele.
Lets hope the hard hitting nature of it will push people into acting....
Sunday, 1 November 2009
10 minutes rowing
3 minutes on the bike
25 sit ups on a big inflatable ball
20 reps on a weight thing for my legs
1 minute on a machine similar to a cross trainer (but hurts 10 times more) I will NOT be going on this one again at least not until I am much fitter and can handle it!
20 minutes on the treadmill on a little bit of an incline (with around 2 minutes jogging)
15 minutes on the bike
Once round the 200 metre track!
In other News, NHSBT are launching a new campaign tomorrow, can't really tell you much more about it today but I can say that it will be in the news/media tomorrow! Check out www.savethetinman.com to get an idea of what its going to be about... I will update in the next couple of days on how its all going, I will be doing a couple of radio interviews for BBC Radio 1Xtra and filming for a channel on Sky called Channel M (from Manchester)!
Bye for now....
Saturday, 31 October 2009
Don't worry it won't all be about getting fit, I will keep you up to date on the latest goings on in my normal day to day life too! (which probably isn't that exciting really)
So today I went with my friend Leah and I did 10 minutes on the bike, 20 minutes walking up a little incline on the treadmill, 3 minutes on a cross trainer, 5 more minutes on the bike and then walked 3 times round the 200m track!
So this is the start... I could never have done any of this before so I am really enjoying it, and it feels like I am achieving something...
So wish me luck in getting fit....
Friday, 30 October 2009
Life does get in the way of blogging sometimes, which is a great thing, if you look back I used to blog every other day - this was because I was stuck in in the evenings most of the time! I am out and about all the time now and although I have looooooaads more to blog about I find it hard to sit down and write it all in one blog post!
So as the title says "A new me..." from this time last year it is a completely new me, a healthier a happier me! I realise for people reading this if you read my last few blogs... I seem to cry ALOT, haha... these are different tears (I blame the drugs) I feel I can be more myself now, I didn't want to cry when I was ill, I wanted to be strong not let things get to me or make my family worry! Now if I cry they know its over something silly and not because I am feeling ill!
So things I have acheived this year (and probably cried at)...
- I had my first christmases and birthdays in 4 years without dialysis!
- I have been to London numerous times... including one time on my own!
- I have spent nights away from home... Birmingham, Huddersfield and friends houses (I didn't want to do this before, in case I was ill)
- I ran (and still run) The Gift of Life campaign... I also continue my work as Advocate for Live Life Then Give Life!
- I have met some amazing people... new friends, old friends and celebrities this year
- I won 2 awards at univeristy, a regional volunteering award and have been shortlisted for a national award.
- I have had my story printed in loads of media this year... big highlights GMTV, SKY News and the metro changing its masthead
- I got a quote of support from Gordon Brown... and still intend to meet him.
- How could I forget my Battlefront programme... a lot of hardwork but I was really pleased with the edit.
- I completed my dissertation.... and finished Uni with a 2:1
- I went on Holiday to Devon with my family for a week
Normal everyday things that have changed, no dialysis, I can eat and drink what I want, I can walk up the stairs without gettin out of breath, I can get up in the morning and feel great (not dizzy or nauseous), No massive painful needles in my arm every other day, I can be spontaneous and jump in the car knowing that I am not going to feel ill and be stranded wherever I am going. I can spend times with my friends (enjoying the odd cocktail, that I missed out on when they were all partying.) I can run around after my neice! I can go on days out.... I can go shopping without having to sit down every 10minutes, I can do more than one thing in one day! The list is endless... it really is a new me!
This week has been great, I did various little things that I wouldn't have been able to do pre transplant to celebrate a year with IVY (my kidney)... I walked up to the Dream Sculpture (an up hill walk) I went out for a meal with my Mum and Dad... it was an all you can eat chinese buffet... I ate all I could (this wouldn't have been possible before due to nasuea) I also had two drinks... this may not sound like much but those two drinks would have previously had to last all day! I went out for the day to Knowlesly Safari Park...
I also set off a flying lantern in memory of my donor this week... it wasn't plain sailing but we eventually got it in the air and watched it float off for about 10minutes before it disappeared behind some clouds... (Pictures from this week will follow in the next blog)
None of the above would have been possible without the generous gift my donor gave to me and their families wishes to donate their loved ones organs... I will be forever grateful and intend to cherish my gift of life and put it to good use and make them proud. My plans for this month are...
- I have joined the gym (SCARY) so I need to go and get some gym gear, so a trip to the Trafford Centre is called for tonight!
- A costume halloween party tomorrow
- I graduate on the 5th
- Its the abseil on the 7th (I will be making final arrangements this week)
- The 8th is my Mums Birthday
- I will be talking to some media regarding my Vinspired National award nomination.
- I will be talking to the media regarding the launch of the new NHS Blood and Transplant campaign to get more people on the Organ Donor Regsiter thanks to a phonecall from my transplant co-ordinator yesterday.
- I have a meeting at the Job Centre on the 12th... so who knows I may have a job soon!
- I hope to go to huddersfield towards the end of the month
- On the 26th November is the awards ceremoney at the Indigo2 in London (I have bought my dress already)
It is a jam packed month with lots of things to look forward to... and again I wouldn't have been able to do half those things on the list before.
No words can express the difference my transplant has made to me and also my friends and family... it is a new me and I hope they like it better than the old one!
I really am loving life and living it to the full...
Saturday, 24 October 2009
As you can see above...Before that day, my life consisted of at least 9 hours a week being attached to a machine to keep me alive, massive painful needles inserted into my arm to allow my blood to be cleaned. I felt wiped out/faint after dialysis often having really low blood pressure and experiencing crippling cramps. I had to keep to a strict diet and fluid restriction, I was tired and nauseous all the time.
I didn't have much of a social life, and didn't see my friends that much outside of university. I couldn't go to the shops without a sit down every 10minutes, I had lots of time of university ill and basically wouldn't know how I would feel from one day to the next.
Now... I can't even explain the difference.
I have freedom from dialysis, Mondays, Wednesday and Friday nights aren't spent attached to a machine, I don't know how I had time to fit it in before... my time is now spent with my family an friends.
Instead of massive needles in my arms every other day I have blood tests with small needles once a month. My anti rejection drugs keep me alive instead of the dialysis machine. I never have cramps anymore and I never feel faint! I can eat what I want (within reason obviously) and I have no fluid restriction which is amazing... I can go out for a meal and not have to worry what to order or that I will only be allowed one small drink with my meal!
I have a social life, I have seen my friends more this year than probably the past 3 put together! I can just grab my keys and drive to my friends houses without the worry of feeling ill, I can be spontaneous which is an amazing feeling. I can go shopping all day and not have to sit down as much as I previously would... the only reason I will sit down now is because my feet are hurting not that I am worried I will fall down if I don't sit down. I can do more than one thing in one day... this sounds ridiculous but before if I knew I had to go to university one day I would I would not be able to do anything else that day as I knew I would be wiped out so I had to rest before I would do anything and then most likely sleep afterwards.
I don't have the worry of how I will feel from one day to the next... I feel great!
This was me 25th October 2008...
Today I will be thinking of my Donor and their family who gave me the amazing gift... the gift of life... I can't put into words how grateful I am... My life has totally changed and I hope I make them proud with what I am doing... I am thankful everyday.
I will share tomorrow some of the things I have achieved this year that wouldn't have been possible with out my transplant...
Thursday, 22 October 2009
News to tell...
My fabulous brother got an amazing tattoo for me... its not really advisable that I get a tattoo due to being immunosurpressed and the high risk of infection. I am quite disappointed about this, and I think my brother knew so he went and got me one! Its one of the nicest things anyone has ever done for me! He was (and still is fab) when I was ill, phoning me everyday seeing me at leas 3 times a week! I hope he is not reading this again, me getting soppy! It says "Live Life Then Give Life" he decided he would get it whilst he was in hospital, and told noone except his wife! I think him being in hospital gave him a shock and made him realise how fragile life is. It made us all realise how fragile life is. When he showed me I just burst into tears... I still can't actually believe it! Here is a pic of it... Not small is it!? He went the whole hog!
My graduation tickets arrived yesterday! Eeeek, it so exciting, I can't actually believe I am graduating... when I was diagnosed with Renal Failure, my whole future was thrown up in the air, I couldn't plan for the next day let alone a few months/years down the line! With the support of my family I have managed to do it and even if I say so myself.. I am proud of it :)
I have been asked to have a graduation profile done, this just involves my university putting out a local press release to the papers etc for outstanding pupils, I'm really honored to be asked!
I appeared in the Warrington Worldwide magazine that I was telling you about in my last post and also appeared in my local paper the Warrington Guardian, you can read the article here.
I'm off to bloods tomorrow morning to check my levels of Tacrolimus, U's and E's, and HB etc amongst other things, this is in preparation for clinic on Monday, its the longest break between clinics so I am hoping all goes well.
I can't believe how fast this year has gone, I will be going to a party this weekend my friends joint 26th and 23rd birthdays! Its sure to be a fab night with lots of great friends in one place... I will however pause to remember my donor as that very day last year I received the phone call to say that a possible kidney had become available. I recieved my Gift of Life the following day (25th October) and so this will be my first transplantiversary, I can't believe I have made it this far... a whole year free of dialysis and a whole year without any overnight stays in hospital!
I am staying over at my friends house after the party and so I will wake up with them all on the day of my transplantiversary... Breakfast is on me to celebrate I think (thats if we can face it)!
I hope I have done my donor proud this year... and will continue to do so next year and the years to come.
Without them none of what I have achieved this year would have been possible...
Tuesday, 13 October 2009
I did an interview on Radio Manchester with Allan Beswick, you can listen again here, I am 2 hours and 12 minutes in. I also did a radio interview for Warringtons WIRE FM, I didn't catch it on air (It was pre-recorded) so don't actually know how I did, that was about me winning the regional Vinspired award and being up for a National one. This also appeared in the online Warrington magazine Warrington Worldwide... you can see it here, it will also appear in the printed version because a photographer came to take my picture for it, which I was pleased about as I don't like the picture on the net, my face looks really steroidy! Its gone down since then (I hope)!
It will be a busy weekend ahead, got the gig on Friday and I will be helping set up and stuff in the day time too which will be fun to catch up with old mates and actually be there in person instead of being stuck up here helping from a distance! Talking of Save Jess-tival you can get some discounts for tickets here if you haven't got them already. Then on Saturday I am hoping to have a walk round London after breakfast with Jess as we are staying in the same hotel which will be lovely! Then apparently I have to go to Birmingham as well at some point this weekend for a pre event for the Vinspired awards... the national finalists have been announced on the website... go down to the shout award and you will see me!
Finally... I want to end on a status I put up today on Facebook and lots of people asked me what it referred to...
♫ This is what it feels like, This is how it feels, now I'm finally smiling on the inside ♫
I have been listening to the Natalie Imbruglia album in preparation to sing along at the Save Jess-tival and the song Glorious came on, I loved this song when it was released but had never actually properly listened to the words... until today! This line in the song reminds me that I am the happiest I have ever been....
Life on dialysis is pretty crap and looking back now I was probably only smiling on the outside, keeping up a brave face and using humour to get through it all... and now like it says I am smiling on the inside and its great! I am doing things I would never have done before... I have been spending lots of time with my friends... staying away from home more often... getting more confident, making new friends! I find myself enjoying every moment... getting emotional at the drop of a hat for happy reasons rather than sad usually, watching a film or when someone does something nice for me! Sad I know... I blame the steroids!
So I am loving life, Smiling inside and out...
Tuesday, 6 October 2009
I really can't wait... I've been trying to do my little bit in helping to organise it, not sure I am being much help but I am trying! Ha Ha! Have received a few raffle prizes so thats a good start and I have sent off 8 letters to companies today in the hope that some of them will offer some raffle prizes too!
In other news I have won a regional Vinspired award and today I also found out that I have been shortlisted for the Vinspired National Award, under the campaigning catagory (It's called the Shout Award.) My university got in touch (before the national bit of news) and said they wanted to write a press release about it to send to local papers, here is a copy if you are interested:
PM-backed Organ Donor campaigner scoops award.
A kidney transplant patient, who spearheaded a high-profile nationwide campaign to boost Organ Donation, is in line to win a prestigious national award recognising the impact of her volunteering.
Holly Shaw, who will graduate in Early Childhood Studies from the University of Chester this November, will travel to the O2 Arena in London next month for the vInspired National Awards, after winning a regional vInspired Award for her prolific campaigning.
Holly, from Westbrook in Warrington, underwent a kidney transplant in October last year, having spent more than three years undergoing regular dialysis while she waited for the phone call that changed her life.
During her time on the transplant waiting list, she set up the Gift of Life campaign to encourage people to sign the Organ Donor register, and from humble beginnings the initiative has sprung to national prominence.
During a national Donor Day earlier this year, Holly appeared on GMTV and Sky News, and even received a personal message of support from Prime Minister, Gordon Brown, as her endeavours prompted 3,200 people to sign up to be Organ Donors. The PM also suggested a meeting at a later date to discuss her campaign further.
Since then, Holly’s campaign has continued. She spent six months with a camera crew making a documentary for Channel 4 as part of the television channel’s Battlefront initiative, and remains an advocate for the Live Life Then Give Life charity, which supports those waiting for transplants and provides post-transplant support.
Holly, said: “I’m very excited about going to the Awards Ceremony in London. I wasn’t expecting to win the regional prize, so this is fantastic news. I started campaigning before my transplant and I’m not going to stop now, it has made a massive difference to my life.
“People take so many things for granted, like being able to eat and drink what they want and going for a day out. Thanks to the generosity of the donor and their family, my life has changed and I can now enjoy these things.
“Organ Donation is something I feel passionately about and I’m thrilled to be able to spread the word. Fortunately my story has a happy ending, but that isn’t always the case due to the shortage of Organ Donors in the UK.
“I was given the gift of life and I’ll always be eternally grateful for that. I’m living life to the full and I’ll never stop campaigning.”
Every year, more than 1,000 people die due to the lack of donor organs for transplant. More than 9,000 people in the UK are currently on the transplant waiting list, so statistically people are more likely to need a transplant than become a donor – only 26% of the population are on the Organ Donor register.
Next month, Holly will celebrate the year since her transplant by taking part in an abseil at Wirral’s Leasowe Lighthouse to raise money for Life Life Then Give Life. To sponsor her, visit www.justgiving.com/LLTGL-abseil
For more information about Holly’s campaign, visit www.thegiftoflife.org.uk
For information about becoming an organ donor, visit www.organdonation.nhs.uk
I don't do what I do for awards or recognition, but it is nice to feel that I am doing some good and someone appreciates me.
Monday, 5 October 2009
It has been all hush hush but now the cat is out of the bag and we can go ahead and annouce it!
So as taken from the Live Life The Give Life Blog
We are very very excited to announce our upcoming ‘Save Jess-tival', a fantastic night of music and comedy to honour our wonderful Jess and to encourage people to "think about it, talk about it and do something about it" (organ donation that is!)
Our headline acts are: stunning singer Natalie Imbruglia, and Canadian comedian Glenn Wool and Mock the Week favourite Ed Byrne, with more to announce later in the week.
This star-studded fundraiser will place on the evening of Friday October 16th at The Village Underground in Shoreditch, London. Doors open at 7.00pm.
Tickets will be available very soon and are limited so, to make sure you are first in the queue, please register your interest by emailing us at firstname.lastname@example.org and we will email you with full booking details as soon as the tickets go live, so you can beat the rush!
For more info on our 'Save Jess' campaign, please visit http://www.savejess.org.uk/
All proceeds go to the Organ Donation Charity Live Life Then Give Life, of which Jess is an Advocate.
Yippeeeeee, it will be a great night, I can't wait to catch up with old friends, meet some new people and mingle with the celebs!
Obviously the main reason being to raise lots of money for a fantastic cause and to encourage more people to think about Organ donation, talk about organ donation and do something about it by joining the Organ Donor Register!
I can't believe I've not even blogged about my first night away from home with my friends, it was a road trip to Huddersfield (I had a fab time, and met some great new people)... all that paled into insignificance when I got back and rightly so.
I was greeted back home by my folks (who had just driven past me and decided to turn round and come back) who said that my brother had had an accident off his bike (Push bike I might add) and that they were off to A&E to see him. My first thought was right I'm coming with you, then I thought I've only had 2 hours sleep and so I wouldn't be much use sitting in A&E with them all and by the sounds of it, its only a scratch on his face... little did I know!
Got back home and watched tv tucked under a fleece feeling sorry for myself (hangover) but I couldn't get to sleep for worrying so rang my folks and said right Im coming now what can I bring, I was politely ordered to bring a towel and some PJ's for my bro.
I turned up at the hospital and couldn't help bursting into tears when I saw him (I'm blaming lack of sleep at this point) half of his face was twice the size it should be, it was covered in roadrash and was turning different colours of purple as we sat there! I composed myself after being reassured by everyone that he was ok (had lost consciousness at the scene for a few mins) and all would be well.
To cut along story short, he stayed in over night to be transferred to a different hospital the next day for a routine operation under General Anestetic to clean the road rash out. I didn't go and see him the next day (thought I would let him get on with it, he's not a very good patient at times) but Mum and Dad went and saw him. Afterall it was a routine operation, one that they do 5 times a day or maybe more! He went down to theatre at 9pm.
We were awoken by a phone call at 12.30 that night, you know when you get a phonecall that late its bad news. There were problems waking him up, fluid in the lungs and he had to be put back to sleep and back on a ventilator!
A million and one thoughts ran through my head.... the worst thoughts ever imaginable... I felt so guilty, I am meant to be the ill one, why isnt it me? Why didn't I go and see him, what if something happens to him, I would never forgive myself!
Im not going to go into details of what happened, he spent 2 nights in intensive care and a couple on the ward and then came home. His face is much better than it was (he looks like he has done 10 rounds with Mike Tyson rather than 15 now) he is feeling tired and I think it will take him a while to get over the shock... in fact I think it will take us all a while...
So Role reversal (the name of the blog)... it's usually me in hospital, I'm the poorly one and THATS THE RULES! Ha Ha! It was horrible being on the other end of it, being a visitor, watching someone you love (I hope he isn't reading this) be so poorly and imagining the worst.
Being at the hospital watching him go through that was bad, I now think of how my folks and him watched me for 3 and half years be attached to a machine, for me it was normal and became routine... for them it must have been awful, I am glad it was me that had to go through it, I don't think I could have coped as well as they have done being on the other side of it all.
It makes you realise how fragile life really is and how things can change in a split second... you never know whats round the corner...
I am so thankful to be so happy and healthy and living life to the full!
Saturday, 26 September 2009
My its been a busy week this week, the #savejess campaign really took off and there will be lots of exciting developments over the next couple of weeks, visit www.savejess.org.uk to keep up to date with it all.
In other exciting news I will be taking part in a 100ft abseil to raise money for Live Life Then Give Life, It will take place on 7th Novemeber at Leasowe Lighthouse in the Wirral. Its all very exciting, I have been organising it all and have around 45 people taking part! It should be a great day and hopefully lots of money will be raised for a fantastic cause.
LLTGL were so supportive of me whilst I waited for my transplant and I want to return the favour and celebrate a WHOLE YEAR without dialysis by doing this challenge! If you want to sponsor me please visit the link below, I know first hand that each donation is gratefully received and will be put to fantastic use.
You can also join the Live Life Then Give Life Abseil group on facebook!
Thanks so much for all your support!
Wednesday, 23 September 2009
The campaign started on twitter, we started tweeting about Jess with the hashtag so we could track how many people have seen it (#savejess) It has now been seen by over 8000 people in just 50 tweets, and well more than 50tweets were sent so imagine how many in total.
The campaign has a logo, so please change your Facebook/twitter pictures to show your support!
And a brand spanking new website (www.savejess.org.uk) where you can also buy t-shirts!
Emily Thackray has been on GMTV and BBC Kent talking about Jess, I went on City Talk to talk to Pete Price about her... word is spreading fast.
- Sarah Brown
- Matthew Horne
- Jason Manford
- David Baddial
- Phil Jupitus
- Bill Baily
- Beverley Knight
- Sarah Cawood
- Jenni Falconer
There is an article here on Sky News... along with a video here.
Another article on the newswire here, where I get a little mention.
So lets get back to the message... I said this in the previous post:
"I haven't spent enough time getting to know Jess.... I want to take her shopping, I want to laugh till we cry (for the right reasons this time), I want to sample a whole cocktail menu with her... I want to dance till our feet feel like they are going to fall off... But this may never happen."
I don't want to loose a friend before I have had the chance to get to know her more, a twenty year old young girl should NOT be facing death, things can change if more people sign the Organ Donor Register.
Please Save Jess. Thank You.
Sunday, 20 September 2009
and this is her today
Jess is on a NIV (a Non Invasive Ventilator) which is helping her to breathe.She is currently in hospital, fighting for every breath. She has 11% lung function and can only breath in the amount of air that is in a coke can. Without a transplant soon... Jess WILL die!
This is the harsh reality of waiting for a transplant, I was one of the lucky ones that was able to be kept alive by dialysis whilst I waited for my second chance. Jess and many others out there don't have this luxury time is ticking... and soon the clock will stop.
This is all because not enough people have signed the Organ Donor Register.
Please visit Live Life Then Give Life to find out more about Jess
Sign the Organ Donor Register
Talk about Organ donation with your family and friends.
Things should be different...
You can help save Jess's life.
Thursday, 17 September 2009
Firstly the blog below says it all but I am just so please that I did well in my results, getting a 2:1 is amazing... I didn't think I would quite be able to do it, what with the transplant, Battlefront and dissertation all happening at once in the third year it was often quite a struggle! I have ordered my graduation gown and Mortarboard and also booked some (very expensive) photographs! My brother and Mum and Dad will be there to see me graduate which will be fantastic, this is happening on 5th November :)
Other stuff that's been going on, I have had lots of lovely days out with Abigail, at local gardens, farms and play barns, she really does make me laugh and she is learning new things every day it really is amazing! Now that she can walk... it takes a lot of energy to run after her when we go out, I really couldn't have done this before... and I am appreciating EVERY second!
In other exciting news.. I got invited to Number 10 Downing Street this week to meet Gordon Brown, sadly it was just too short notice and I was unable to attend! Afterward I found out that my Battlefront mentor Oli Barrett was there, Matt Locke the Channel 4 Education Boss which commissioned Battlefront and made it award winning and finally the fabulous Diversity were there, I was gutted to say the least! It really wasn't feasible though and I was reassured that there will be other opportunities to meet the Prime Minister, which I am very much looking forward to!
My final bit of exciting news is that my swim at a local swimming pool has been given the go ahead, I don't know if I have told you about this (my memory is shocking) I originally fancied doing the Great North Swim (a mile in open water) but I was a bit worried about swimming in a lake and what bugs (as in unhealthy bugs not animal bugs, although I would be worried about them to) would be in the water. So I thought why not do it in a swimming pool instead... and get people to sponsor me! I am unsure as to when this will happen... as there is some other exciting news, which is top secret at the min, which may involve me and Live Life Then Give Life... so will keep you in the loop about that when I can!
Looking forward to lunch tomorrow with a friend and then we're catching up with other friends tomorrow night too!
Then next weekend I am off to Huddersfield for a housewarming party and staying the night there with my friends which should be a laugh...
I really can't believe I am actually talking about all these things in one blog... how far I have come in a year... I used to feel nauseous everyday, had to stick to a strict diet and couldn't socialise with friends... not to mention being tied to a dialysis machine for over 3 hours 3 x a week!
I am going to GRADUATE, I can RUN AROUND after my neice, I have been invited to meet the PRIME MINISTER, I am doing a SPONSORED SWIM and I am catching up on lost opportunities by spending TIME WITH FRIENDS!
I am currently wearing a T-Shirt saying "Living the Life" and that is exactly what I am doing!
I am LIVING THE LIFE and LOVING IT!
Saturday, 12 September 2009
Wednesday, 9 September 2009
Jessica is waiting for a double lung transplant and has been for four years, receiving 8 false alarms. She is currently on Oxygen 24 hours a day and She decided, with just 11% lung function she would do the 5k addidas challenge in Hyde Park! Jess can only breathe in the amount of air in a can of coke, yet she wanted to walk 200m out of every Kilometere and thus walking 1 whole Kilometere! I am so pleased to say she did it, and as ever had a smile on her face!
Click here to see a video of Jess's Challenge and details of how to sponsor her.
Louise has had a single lung transplant and she decided she also wanted to take on a challenge and raise funds for LLTGL although she is post transplant she is suffering severe complications, including a form of post transplant cancer and heart failure. Lou decided she would hug a tree for 2 hours continuously, this doesn't sound much, but Lou finds walking difficult so standing for 2 hours was a huge physical and mental challange, but she did it!
Click here to sponsor Louise.
Lou and Jess are such an inspiration, they are brave, corageous and fabulous young ladies and I am totally in awe of their acheivements!
Congratulations girlies, you rock muchly :)
Whilst on the subject of Live Life Then Give Life, I just want to wish them luck for tonight, it is the Charity Times Awards and they have been nominate for best new charity!
Fingers, toes and everything crossed that they win. They do a fabulous job in raising awareness of Organ Donation, supporting people on the waiting list and ultimately saving lives.
I am so pleased and proud that I am part of such an amazing charity and team! Having kidney failure is pretty rubbish, I'm not going to lie, but if it hadn't have happened I wouldn't have met half the people I have today. People that I can now call friends. I am part of a club that no-one really wants to be apart of... but I'm so pleased I am... and I'm never going to leave :)
Tuesday, 8 September 2009
Other things that have happened this week...
I went to see the amazing Tim Minchin, he was soooo funny! It was totally different to anything I have seen before, it was a cross between a concert and a stand up act! He is so clever with his lyrics and he is fantastic on the piano, not to mention his voice! You tube him if you want to find out more... be aware though if you are easily offended!
On Sunday I went out with a couple of my friends and their mum, we went to the trafford centre, watched the Time Travelers wife, which was soooo sad, we all ended up in floods of tears! We then went out for tea at the American Bar and Grill which was delicious!
Today I had a DVD and Duvet day with my friend Sal, we watched Little Miss Sunshine, The Butterfly Effect and Four Weddings and a Funeral! I have to say I was pleasently surprised by the Butterfly Effect, this was my favourite film of the day, its confusing at times but definitely makes you concentrate and think!
Thursday, 3 September 2009
I am pretty proud of myself too (don't want to boast about it though haha)! This time last year, there was no way that I would have gone to the shops on my own, let alone London. Friends that will be reading this will be thinking, ye but you went to university on your own, I did, when I first started I was really nervous about going on my own but as the weeks/months went by and I got to know everyone and they got to know about me (and my illness) I was fine.
This is why I think I didn't want to go out on my own, I always had my fab Mum or Dad with me, I didn't even mind going out with my friends, as they knew about my condition. However going out to the shop on my own I wouldn't like at all, what if I fell ill, collapsed or fainted? I think this was my worst fear, it wasn't because I didn't WANT to go out on my own it was because I was worried about the WHAT IF's of going out on my own.
Now that I am feeling well this fear has gone, I can do what I want, when I want! It's a great feeling... I am not planning on jetting off around the world or moving out of home yet (Sorry Mum and Dad) but I think I am making progress and getting more confident!
I may actually be starting to grow up too... I have enquired about two jobs in the past few days and one is looking promising for an interview... and I am waiting for an application form for the other! It's a scary but exciting prospect...
None of the above of course would have been possible without my wonderful donor and their special family... I remember them every day in everything that I am now doing that was not possible before.
Wednesday, 2 September 2009
On the Sunday The guys arrived home from Wembley at about 2, a few of my friends were going to see the victory parade (because Warrington won yay!) and so I joined them. It was a really great atmosphere, they reckon around 50,000 people turned up! As soon as the team arrived at Warrington Town Hall it absolutely chucked it down! We all went home looking like drowned rats, but I was so glad I went.
Other things I've been up to is getting through a massive to do list... everytime I cross something off, I seem to add something new! One thing on my list was to write up some notes for a Department of Health meeting that I have been invited to, I can't attend but can email my notes over for them to see. The Organ Donation Taskforce report, published in January 2008 recommended that ‘Appropriate ways should be identified of personally and publically recognising individual organ donors, where desire. These approaches may include national memorials, local initiatives and personal follow-up to donor families.’ A review is underway to expolre current and proposed initiatives to reconise donor families, and to stimulate new thinking about the most appropriate ideas for taking this recommendation forward. So this is what I have been thinking about... how to recognise donors and their families appropriately! What a hard topic to tackle, I hope I get my message accross ok in my notes.
I've just got back from the hair dressers (I have short red hair again!) I decided to get it done this week as I am going to see Tim Minchin on Friday, then heading into town. Then on Saturday it is Abigail's Birthday and she is having a party, so wanted it nice for then.
So thats it really nothing exciting to report...
Oh I've enquired about 2 jobs, both working with children but completely different things! So will have to update my CV, eeeeekkkk I sound too grown up!
Friday, 28 August 2009
I went to the hospital in Liverpool today ON MY OWN! I am not the most confident when it comes to driving on the motorway but have had a few practice runs with the olds and today I took the plunge! I was totally fine (I knew I would be) and got there well on time arriving at 9.30am. I took my ticket in the blood room and took my seat... I then looked up at the bored and realised there was nearly 30 people in front of me! Oh well.. I will remember to take a trashy mag next time! So I twiddled my thumbs and at 10.20 my number got called, bearing in mind I should have taken my tablets at 10! I sat down on the chair and told the phlebotomist that the ward should have sent the forms down so she went off to look for them.. but guess what! They weren't there!
I wasn't impressed to say the least... I had waited for so long and was going to have to go up to the ward to get the forms anyway! Which I did, luckily the lady was nice enough to let me go straight to the front when I got back... I'm sure people just thought I was pushing in.. oh well!
The lady also told me that if it gets near 10am next time that I should just tell them and they can push me to the front so I can take my tablets on time, so thats worth remembering!
I've just had a phonecall from the hospital and my magnesium is low, so I've got to eat lots of veggies (yuck) and red meat! I won't get my tacrolimus levels back till Tuesday and then I am at clinic again on Wednesday to get both the Tac levels checked and the magnesium!
So thats it for today really... did a little but of shopping with my Mum earlier on! We are so looking forward to our weekend with Abigail, she makes me laugh so much! If I hadn't of had my transplant there is no way I would be able to have gone on half the days out with her that I have! Helping my folks look after her keeps us busy and I just wouldn't have been able to do it before... so I am so thankful that I can spend so much time with her, and of course the rest of my family!
So there you go... no stopping me now, Birmingham on my own, train home from Manchester on my own, London on my own and now the Hospital for bloods on my own.... New York 2010? Who knows....
Thursday, 27 August 2009
I haven't updated the blog in a while... I bet you all thought I got lost in the Big smoke didn't you!
I traveled down there early on the Saturday, catching the 7.20am train from Warrington Bank Quay and arriving at London Euston at 9.10am! ( I usually would still be in bed at this time in on a Saturday morning!) I got myself a taxi from Euston to the hotel as I wasn't confident yet in the thought of traveling on the underground (maybe next time).
I was one of the first to arrive, the conference suite we used was great, Starbucks coffee and tea on tap! It was so fab to finally meet up with the most of the advocates from Live Life Then Give Life (we missed you Jess and Jac) they are all totally great, brave and inspirational people! Emily was there and two of the trustees, Mandy and Pops, me and pops got on great and hit it off straight away (put it this way, at any future events, Emily will probably not sit us next to each other as we giggled too much!)
We brain stormed ideas, role played scenarios, did quiz's, team building and (my favourite bit) sharing our personal stories... the challange was to tell our whole stories in 3 minutes, this was a challange! Everyone's stories are so interesting, unique and moving... there wasn't a dry eye in the house once everyone had finished!
That evening we went out for a meal at an Italian resteraunt, Strada. We got to relax and chat about the usual things such as shopping, jobs and of course THE napkin boobs! (see the picture below) This is a skill I won't forget in a hurry (thanks Lisa) the waiter was great and really got into the spirit of things!
And a more sensible photo....
Later that night me and pops made a deal that she would call into my room at 1.30am so we could watch the x-factor and then go back to sleep - We had a right laugh and eventully pops left me to get to sleep about 3.15am!
The following day Sarah Milne from the Gifts of Life photo project came along to take some pictures of the advocates, here is an example (see below). We worked hard at the weekend but this was balanced out with plenty of fun and laughter! I came away with some new ideas and inspiration for my role as an advocate but most importantly I came away with some fab new friends!
Other things that have happened this week, I went to the cinema to watch the Ugly truth! It was a really funny film and I love the acter Gerarrd Butler who played the main character! He wasn't particularly good in the film PS I love you, but certainly redeemed himself with this film!
Yesterday I did my final piece of uni work (I deferred it because I was still recovering from transaplant) it was a presentation, I had to do an A1 poster on leadership in Early Years settings and a paper to go along with it (1,600 words) to summarise the main points of the presentation! I think it went really well, I tried not to read to much from my notes. I was a bit nervous, as my previous presentation such as campaign ones or LLTGL ones are about me, I can't really go wrong, so this was different I actually had to learn and understand what I was saying, which I did in the end after a few practices before hand!
So thats it, I have finished uni... no for the results, well I know most of them.. the results for this one will mean I will finally have my degree classification and can graduate with my friends in November at Chester cathedral!
Today I spent the day with my folks, Abigail and some friends (and their kids) It was great, we went to a local park, Walton Gardens, had a picnic and generally just chatted whilst the kids amused themselves!
The ladies are going to America (New York) next year and have invited me (and I think my Mum) along with them! Arghhhh! I sooo want to go, for those of you that know me, you will know I want to go on a shopping spree in New York and I would love to Ice-Skate in Central Park! I am hoping to go (will have to save up some pennies) but I also have a wedding to go to next year, at around the same time (Easter) and that is in Ireland, so who knows! But watch this space!
Healthwise forgot to mention my Tacrolimus Levels having been playing up again, I went to clinic on Monday and they didn't seem to concerned but had to go for bloods on Tuesday and I am going again tomorrow, I then have to ring on Monday to see if they need to reduce my Tacrolimus any further (It got reduced last week from 2.5mg twice a day to 2mg twice a day) then if it does I will have to go for 2 more blood tests next week!
Finally (this really is a long blog, I really should start doing lots of short updates instead of massive ones!) Abigail is staying over on Saturday night! It will be her first time sleeping here, My Dad, bro, his wife and her family are off to see the mighty Warrington Wolves compete in the challange cup final at Wembley! So me and Mum are having a fun packed weekend with the littlun! Can't believe she will be 1 a week on Saturday where has that year gone! She can now say a version of Holly and the word of the week is toaster! So cute!
Of course none of the above, or anything I do day to day would be possible with out me receiving my transplant (I celebrated 10 months post transplant this week) I think of my donor often and hope they would be proud of what I am doing with my new lease of life.
I hope and pray people (like Jess) waiting on the transplant list receive their gifts of life soon, so they too can have a second chance at life!