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!