Sunday, 28 June 2009

A big step...

... well not for most people, but for me it is!

On Saturday I will be getting the train down to Birmingham ON MY OWN! This is the first time I will have done this since I first became ill when I was 17! I had done it previously with friends going to Southport, but this will be the first time completely on my own! Which I am nervous about, but it will be good for me to have some independence, and this will be a nice practice for when I get the train down for the LLTGL Advocate away day in August.

I'm traveling down for the Donor Family Network national Donor Family Gathering. You can read more about their latest news on their blog here. The Donor Family Network provides support for the families of those who have died and donated organs and tissue for transplant. The Network also works to promote awareness of organ and tissue donation. The day will consist of workshops, exhibitions, memorial service and the chance to meet the special people that are donor families. I am really looking forward to it, I will be running a stand/generally promoting Live Life Then Give Life with Chairman Oli Lewington. I will also be meeting up with people I haven't seen from Donor Day which I am very much looking forward to including the lovely Pauline Weaver, affectionately known by most of the transplant community as Aunty P, her and her family have kindly offered to put me up for the night and then my Mum and Dad will be traveling down on the Sunday to pick me up and we will attend the thanksgiving service, which I will be doing a reading at, which I am also apprehensive but again its something that I have to get used to doing... talking in front of people... if I am going to make a success of my campaign and fulfil my role as an advocate for Live Life Then Give Life.

Saturday, 27 June 2009

Come on, Come on, Come on... TAKE THAT...

... and party!

That's exactly what we did! Me, Emily, Fiona (bro's wife) and Lisa (Fiona's friend) had a fantastic night. The boys put on a fabulous show with lots of stuff going on, acrobats, trapeze artists, stilt walkers, drummers, dancers, clowns!

There was ticker tape, fire, lots of balloons, rain on the stage, fireworks, an inflatable scary face and even a mechanical elephant! Click here to see some pics!

The tickets were bought a few days after my transplant, my brother had gone online early to get them for me, I made all the nurses incredibly jealous when I told them as they were too busy working to get them! I can't believe that was 8 months ago, I would never have been well enough to go to a concert like that previously, walking from the car to the venue, standing and dancing all night, and then walking from the venue back to the car it just would not have been possible and of course it was on a Friday night, which of course would have been a dialysis night and a complete no-no!

It was the most amazing concert... the best I have ever seen! I really want to go again but I suppose I will just have to wait for the tour DVD to come out! It was well worth the money... I treated myself to a canvas tour bag and a programme as it was my first concert post -transplant (the first of many I hope) already have tickets for Lily Allen in November which I am really looking forward too!

I was sad to see Emily off today, but it won't be long till I am off down to London to catch up with some of Holly's Helpers from Donor Day which will be great!

Thursday, 25 June 2009

My month in pictures....

Today I am 8 months post transplant! I can't believe how quick it has gone! Life is as busy as ever at the mo so thought I would do a round up of this months events in pictures... Enjoy!

Making the most of finishing uni and celebrating my new life!
(I think I was the only one aware that this pic was being taken)

Spending time with friends!

Finding new ways to promote the campaign

These are what keep me alive! My anti-rejection (immunosuppresent drugs) - MMF (CellCept) Tacrolimus (Prograf) and Prednisolone (Steroids)

3 months supply of most of my tablets

London - outside Big Ben

My meeting with the Department for Children Schools and Families (DCSF)

After the meeting - I changed from my high heel shoes to my flats! (Mum thought it would be funny to take a pic!)

We stopped at Stratford-upon-Avon on the way home from London and saw where Shakespeare was born

I have enjoyed many afternoon naps with Abigial - snuggled up on the sofa!

She makes me smile!

and... she gives great cuddles!

Also this month... I received my prizes from University! The McCormick Prize for volunteering and the Citizenship prize for a selfless act! They arrived in the post as I didn't attend the service as I was not allowed to take anyone with me! There is an article here about it and I appeared in my local Warrington Newspaper too! I received 2 lovely certificates and 2 cheques, I'm going to think about what I am going to buy very carefully... I will let you know what I decide!

I also found out that I had passed my dissertation! This means I will definitely be graduating, at one point this year it was suggested to me that I could always give up and go back next year, due to me receiving my transplant, being in hospital and then recovering as well as the campaigning, going to university and doing all the assignments as well as the dissertation! I am so pleased that I carried on, I passed with 61% which doesn't sound a lot but this is a 2:1, I am really chuffed that I will be able to graduate with my friends. My Brother, his Wife and Abigail bought me a balloon, card and some flowers to say congratulations which was so kind of them! I get my results on the 6th, however I still have one assignment to do (as I was in hospital at the time it needed to be handed in), this will be done in August and then I will graduate in November!

That's it for now... I am at a children's party tomorrow morning, Emily is coming up about 2 o'clock and then we are off for a fab night out I'm sure....

Come on, Come on, Come on.... TAKE THAT... and PARTY!

Tuesday, 23 June 2009

A personal story...

I always think the best way to reach people and encourage them to think about organ donation is sharing personal stories. These often have the most impact and maybe prompt people to be proactive and actually sign the register. This is why I am sharing this and why the author of this piece of writing wants me to share this too! I only know Rhia Murray through Facebook and my campaign, but she is one very brave and inspirational 17 year old and I think her story portrays this. This was only written yesterday...

"I have Cystic Fibrosis. Many people don't know what this is; but the people who do, will understand what a cruel illness it really is. It is a life-threatening lung condition, which not only affects the lungs, but also the digestive system which results in lots of different medication giving us a very short life expectancy of 31 years.

I however, would not of even made it to my 17th birthday, if it wasn't for the kind genorosity of my donor, who I thank from the bottom of my heart. All my life, up until then I had been suffering. Struggling. Desperate to want to be able to know and feel like what it is like to breathe like a 'normal' person. Just to be able to take a big deep breath in to fill the whole of my lungs!

2007 was when things really started to go downhill - very fast. By 2008; I was on 24hr oxygen and needing a wheelchair to get around. It was an effort to even brush my teeth as I would be literally gasping for air.

Getting up the stairs would be a mission - I would take one step up and have to wait a few minutes before taking another. All in all - it would take around 15 minutes to reach the top, and once there I would then have to sit at the top to catch my breath. It was hell. Pure hell, then the coughing up sputum started...
Me being a right girly girl, I love to wear nice clothes, do my hair and make-up, but I couldn't physically do that, I didn't have the energy and to be honest, I didn't even care what I looked like at that point.

I had planned my own funeral. My life was coming to an end, and I knew it. I made sure I told the people who mean the most to me, that I loved them at every possible chance I could, even though it left me breathless, incase that would be the very last time I did. I dreaded going to sleep at every afternoon nap I had and every night, incase I never woke up. I wasn't ready to die. I was scared.
I was only 16 years old and I had my whole life ahead of me, I had dreams and hopes for the future.

Why me?

July 2008, I was put on the active list for a double-lung transplant. I truely believed I wouldn't get it, but I must have someone up there looking over me, because on 28 August 2008 - I got the call! My life was finally going to change! I would finally have the chance to know what its like to breathe normally.

Three weeks later I was discharged from hospital, still feeling slightly shakey in my legs as I hadn't used them for so long! My face was very chubby due to the anti-rejection tablets called prednisolone I had to take - I hated looking like that!

The main thing was I could BREATHE! It felt AMAZING!

Now, nearly a year on, my life is finally getting back on track. I am starting as a trainee hairdresser as from September - which I have always wanted to do - but couldn't for obvious reasons. I can actually run, dance and talk an actual sentence without it leaving me feeling exhausted! I am starting my driving lessons very soon - which I cannot wait for! I'm even planning the biggest party for my 18th - even though it's next year!

I'm starting to love my life now. One thing I've learnt in life, is NEVER take life for granted and live life to the full.

You never know when it will all end."

So if that doesn't prompt you to sign the register or talk about your wishes with your family then I don't know what will. Transplants really do save lives, this young lady is proof! They transform them too and I am certainly evidence for that! I am really happy and have lots to look forward to and intend to make the most of every second and as above "NEVER take life for granted and live life to the full!" All of which would not be possible if it was not for my donor and their family.

To sign the Organ Donor Register Click here or to find out more about Organ Donation and transplants visit Live Life Then Give Life.

Thanks x

Saturday, 20 June 2009

LLTGL and My Sisters Keeper

As I have talked about previously, On 26th June 2009, My Sister's Keeper is being released in cinemas throughout the UK, the main theme of the film is blood, bone marrow and organ donation. You can watch the trailer for the film here.

As most of you are aware I am a North West advocate for Live Life Then Give Life and they
are encouraging people to write to their local cinemas asking them to display organ donor leaflets in their foyer. Which I have already done, to find out the ones that took me up on this click here.

Could you write to yours? For more information and for tips and support (including a downloadable letter template) click here.

Please spread the word and encourage your friends and family to write to their local cinemas: The more the merrier and the more awareness we raise the more people will think, talk and perhaps be proactive about Organ Donation and sign the register.

Friday, 19 June 2009

Busy Times ahead....

So my diary is looking pretty chocker in the next coming months! Thought I would keep you in the loop so that you might understand if I neglect my blog!

Tomorrow - I'm going to my friends housewarming BBQ, this should be great fun (and Em if you are reading this, I will remember to blast my stuff in the microwave ;o) This will prob go on into the evening and then it may end up with us all heading to the pubs and clubs in the town centre.

Sunday 21st June - Fathers day! Got my dad one main pres and then some cheeeeeeeeesy presents, can't say too much cos he reads this! We'll probably have a quiet day and then a Sunday lunch. This will also be my brothers first daddy's day! So no doubt Abigail will have bought him some treats!

Tuesday 23rd June - It is my brother and Sister in-law's 2nd wedding anniversary! I can't believe how quick those past two years have gone. I remember being worried if I would be well enough on their wedding day to enjoy being a bridesmaid (thankfully I was)! Again can't say too much about pressies incase they read, but I am sure they will like :o)

Wednesday 24th June - Blood tests at the Royal Liverpool Hospital.

Friday 26th June - In the morning I am off to a childrens party and then in the evening TAKE THAT! wooo! Emily is coming up for the night (I bought her the ticket as a thank you for helping me with the campaign and a birthday present rolled into one)! We are going with my Sis in-law and her friend! I can't wait!

Monday 29th June - Clinic at the Royal Liverpool Hospital. (There are usually delays so this will be a few hours long!)

Thursday 2nd July - My Gift of Life talk with Sally at West Houghton High school in Bolton, in front of 40 year 12 students.

Saturday 4th July - I am off to Birmingham for the Donor Family Network Gathering.

Sunday 5th July - again in Birmingham, I will be attending (and doing a reading at) the Donor Memorial Service.

Tuesday 7th July, Wednesday 8th July, Thursday 9th July - LLTGL talk with fellow advocate Carol Beckett at Turton High School infront of 200 students each day!

Saturday 11th July - My first proper post transplant holiday - a week in Devon, I am so excited! It will be me, my Mum, Dad, Andrew (my Bro), Fiona and Abigail! I would never have thought I would be able to go to Devon, its a 6 hour drive from my house! I used to get travel sick if I spent more than an hour in the car!

Satuday 25th July - I am off down to London, this will be more of a social visit to meet up with Emily and other people that helped out on Donor Day, there wasn't much chance for me to chat to them much so this will be a great opportunity to exchange gossip and maybe throw some campaign ideas around too?!

Saturday 15th August - I am really loooking forward to meeting up with Sarah Milne, from the Gifts of Life photography project. She is going to be photgraphing me in Manchester in the morning and then Team Ethan in Manchester in the afternoon. If you haven't checked out her blog, go do so now: here!

Friday 21st August - Mum and Dad's wedding anniversary!

Saturday 22nd/23rd August - I will be off down to London again for the LLTGL advocate away days! This will be my first opportunity to meet some of my fellow advocates, talk, share our ideas and stories etc.

Monday 24th August - this is the universities assessment week and at some point I will have to do a piece of work that I missed whilst I was in hospital recovering after my transplant! It is a presentation about Leadership in Early Years Settings (have not really looked at it yet, so must do that pretty soon!)

I can't believe it... we will then be onto September and celebrating Abigail's 1st Birthday!

Lots and Lots of great stuff to look forward to, remembering that amongst all that my folks look after Abigail every Monday and Thursday (which I am loving!), I will have to keep pushing the campaign forward, look for a job at some point, but also remember to have some me time to relax, read trashy magazines and watch cheesy soaps!

Thursday, 18 June 2009

Time flies when you are having fun...

Time is absolutely flying by! I don't know where it disappears to and I certainly don't know how I had time to fit in dialysis before!

I can't pin point all the things I've done recently, spent time with friends and family being the main thing that sticks out. It's just so lovely to not have to watch the clock on a Monday, Wednesday and Friday evening, last summer I missed out on sitting out in the garden on the light nights something which I am looking forward to this year!

I love looking back on old blogs to see what I was up to this time last year... and if your wondering... I was kind of stressed as I was on work placement, having to juggle that and dialysis and had to have an operation on my arm! I had an anyerism in my fistula and so I it was necessary for me to have a fistulaplasty! A balloon inserted to enlarge the vein! A very painful but quick procedure.

If your wondering... I still have my fistula, it is still a bit lumpy and it certainly continues to buzz! Fistulas aren't normally removed after transplant as it was completed during a surgical procedure and of course I may need to use it in the future as I am more than likely going to need dialysis again in the future.

Anyway sorry to take you back there (trip down memory lane), its just interesting to see the contrast from my life back then to my life now!

Today I spent the day with my neice and we went to a play barn called crackpots! It was great and Abigail had such fun and was laughing away! This evening I am spending time planning some talks I am doing in July I have 4 planned, 1 for Battlefront and 3 from Live Life Then Give Life. The Battlefront one I will be doing with my good friend Sally, I think it will be interesting for her to talk about what she has learnt from me about Organ donation and Transplantation but also how seeing me go through dialysis and a transplant affected her and her view of how I coped etc. This will be done at a school in Bolton in front of 40 year 12 students. The 3 for LLTGL are all at the same school on consecutive days! This will be in front 200 students each day (3 different year groups) year 8,9 and 10 I think! I will be doing these with a fellow LLTGL advocate Carol Beckett, who you can read more about here.

It will be interesting to see how the different talks go and how they differ as I am doing them with different people (different ages) in front of students from different year groups! Will let you know how my plans come together! I'm really nervous about presenting but it will be good practice for me, and I know that if I want to continue campaigning then it is something I will have to get used to and have to be more confident at!

I have lots of things to look forward to over the next couple of months.... will fill you in next time!

Tuesday, 16 June 2009

My Sisters Keeper

Some of you may have read the book, I have and it is one of the best books I have ever read... a real page turner!

I don't want to spoil it for you if you haven't read it, it tells the tale of a loving family where the child is very ill and it deals with the impact that this has on the whole family. It goes on to highlight the difference that bone marrow donation and organ donation can have on an individual , a family and on society.

A film is now being released on 26th June and a friend of mine had the great idea of writing to cinemas to ask them to display leaflets and organ donation registration forms. I emailed all the big companies and wrote 20 letters in total, I have 8 cinemas confirm that they will be willing to do this which is great, and I am hoping for more. I actually got sent through 2 guest passes to go and see any film at one particular cinema as the person I wrote to must have thought I was fundraising, I wrote back to the lady and said that she may have misunderstood and enclosed some leaflets as well, so hopefully she will display these too!

So these are the confirmed ones so far...

Hollywood Cinema

Hollywood Cinema

Hollywood Cinema


Hollywood Cinema

Hollywood Cinema

Hollywood Cinema


And hopefully the cinema that sent me the guest passes will confirm too...

Odeon Cinema
Trafford Centre

Will keep you updated!

Monday, 15 June 2009

Meeting with the Department for Children Schools and Families.

So the update is finally here...

I went down to London last week for the meeting with the DCSF that came about due to my Pitch to Ed Balls afer meeting him in March.

The meeting was at the DCSF headquarters at Sanctuary Buildings, not far from Westminster Abbey! Me, Mum and Dad went along to meet Oli at a cafe near by before the meeting, we all had a quick cuppa and then my folks left to leave me and Oli to get down to business and discuss what we were going to talk about at the meeting.

I had prepared lots of notes regarding what the DCSF had already done to promote Organ Donation and encourage it to be talked about in schools. Such as the introduction of the Register and Be a lifesaver scheme by the Anthony Nolan Trust and the Give and Let Live education packs.

I was disputing tha these were fantastic initiatives, they just need to be more widely available and marketed properly. Teachers aren't using the Give and Let Live project, this may be because there isn't enough communication surrounding it. I looked into this and came across some research done on it, I found out that:

When letters were sent out to schools regarding the Give and Let Live project 250 schools were contacted for a telephone interview, and of these, 63% had no record or recollection of the letter being received. Of the 28% who were aware of the letter every single one (100%) had decided NOT to implement the government's education programme in their school.
The reasons for this were:

1. There are other Government directives which have a higher priority
2. There is no additional funding for the Give And Let Live resource
3. Limited resources within the school prevent them including the Give And Let Live pack
4. They will find it difficult to fit everything into the timetable

Therefore the UK Government needs to review the marketing, communication and support it offers to Head Teachers and schools if they want the Give And Let Live resource to be utilised.

I believe...

The reasons for this are..
  • There are children on the list who will need donations from children
  • Last years figures show that 28 children died whilst waiting for a transplant
  • 173 children were on the transplant list.
  • Of the 800 people who donate organs each year, less 25 are children

Registering as a donor is something children can choose to do, even though they are under 18.

Parents would have the final say as to whether their child’s organs were used in the event of their death, but, if they knew that’s what they would have wanted, chances are they would get comfort from knowing they were following their wishes.

This is why it is so vitally important to tell loved ones if you would like to be a donor.

Death is still taboo subject, perhaps this is why teachers are not forthcoming in presenting information on Organ Donation to children/teenagers however If people are educated, given the correct information they can then make an informed decision as to whether they want to donate their organs or not.

There is no reason why teachers should not take advantage of the Give and Let Live project.

It contains all the vital information on Bone Marrow/Organ/ Blood Donation through

• Online Resources and Downloads
• Fact sheets
• Presentations
• Lesson Plans and Activity Sheets
• Interactive and Audio Visual Materials
• Quizzes and Games
• Films
• Real Life Stories

It tells the teachers how to use the packs and implement the information into lessons during Personal Social and Health Education, Science, RE and other Curriculum Links including the use of Information Technology.

It’s user friendly, eye catching and age appropriate.

For the second year running, more than 3,700 secondary schools in the United Kingdom will be offered the free education resource to raise awareness of blood, organ, bone marrow and tissue donation.

But... based on previous research only a small percentage (if any) will take up the opportunity of using the resource. Schools need to be made more aware of it. More substantial marketing and communication is required regarding the Give and Let Live pack i.e. repeating/building on what has already been done or the current method and approach may need to be revised.

So the people me and Oli met with were lovely and really helpful, they are going to put me in touch with various other people that may be able to help me in the future, the main problem in me just going to the meeting and saying right something needs to be done to get the message about the Give and Let Live packs out there was funding. I think the pack is such a useful resource.... So I need to get my thinking cap on and find a way to get the word out there...

Saturday, 13 June 2009

Quick update!


Just a quick update, I will do a proper blog at some point tomorrow, but it's safe to say I am very busy and I am having lots of fun... so to sum up my week.

Monday - Me, my Mum and Dad spent the day looking after Abigail, she is growing up so quick and learning something new everyday!

Tuesday - We set off for London early in the morning ready for my meeting at the Department for Children Schools and Families (DCSF) at 2.30. We headed into Westminster so I could catch up with Oli before the meeting. (Updates on this and pictures to follow)

Wednesday - We traveled back from London stopping at Stratford-upon-Avon for a little look around the shops and a spot of lunch.

Thursday - We looked after Abigail all day again, my friend Helen came round to see her and me and Abigail had us all in stitches showing off her new party tricks. That night I went out for tea as it was my friends daughters 3rd birthday so I celebrated with her, her mum and some other friends, I had a carvery and it was gorgeous!

Friday - I went to clinic in the morning to get my tacrolimus (immunosuppresant drug) level checked as they have recently put up my dose to try and get it to an acceptable level. It took 3 attempts to get my blood! 2 in the back of my hand, which I wasn't impressed about as it hurts so much more than in my arm! I now have some lovely bruises on my hands. I had a busy afternoon as I popped into town to pick up a dress that I had ordered from Dorothy Perkins, also picked up some cookies as I was on my way to visit a friend who has broken her elbow! Me and Mum had a nice afternoon chatting to her and I was running around after her 3 year old son. It was then home and a quick bite to eat for me and then headed out (wearing new dress) to a friends house party! It's safe to say I had a great night (from what I can remember) but woke up with a hangover, nothing that a good bacon buttie couldn't fix though!

Today I went to my friends daughters birthday party at a play barn, my friend invited my neice so me, my Mum and my Sis-in Law went along. Abigail had lots of fun and couldn't take her eyes off the other kids, I was also impressed with her latest party trick... as it was one that I had taught her, she can now do the actions to "Round and Round the Garden"

So that was meant to be a quick update but it is clearly longer than I anticipated... Tomorrow I am off to meet Helen for lunch but I will be sure to do a blog at some point with an update on the campaign, latest developments and more about the meeting with the DCSF.

Saturday, 6 June 2009

I'm still here!

Yes it has been a while...

If I don't blog it can only be a good sign, it means I am busy enjoying life and not spending as much time sat in front of the computer!

I'm not going to write to much about it here as it is personal but I wrote to my donor family, it was the hardest letter I have ever had to write but I am so pleased I wrote it and even more so when I found out (from my transplant coordinator) that they had received it and were so grateful for it and wanted to pass on their thanks to me. I am so thankful to them and they are never far away from my thoughts.

On the health front, I went for blood tests on Wednesday I was hoping to hear that they could reduce my steroids but a phonecall that evening showed my Tacrolimus (immunosuppresant drug) levels were too low at 5.4 (It has to be between 6 and 8) so they had to up my dose of this, this now means that I have to wait again for it to be stable before they can reduce my steroids! Everthing else is fine though... I will soon see if its not as I am off to clinic on Monday afternoon! I'm a bit disappointed as this is one of the days we look after my neice and I usually snuggle up with her on the sofa for an afternoon nap! Ah well may have to have a morning one instead!

I am enjoying reading NON university books at the minute! And I am on my 3rd in as many weeks, the first one I read was "The Self Preservation Society" which was ok, not the best book I have read but it was a nice easy read. The second book is the best book I've ever read "My Sister's Keeper" the theme running through it is blood/bone marrow and organ donation! Its full of many moral issues, I won't spoil it here, you will have to read it yourself to find out what happens! If books and reading aren't your thing then you will be pleased to know that film of it is being released on the 26th June, you can see the trailer for it here. I'm really looking forward to watching it and seeing how it differs from the book. A fellow LLTGL advocate came up with the great idea of writing to local cinemas to ask if they would be willing to display organ donation leaflets in their foyers to coincide with the release of the film, so I will be doing that. I am hoping to send out 10 on behalf of LLTGL and 10 on behalf of The Gift of Life.

I have been doing research over the past couple of days for my meeting with the Department for Children Schools and Families. I am nervous but excited about the meeting and I have been reading up on what the DCSF have already put in place to promote organ donation in the past. I hope to praise them on their work so far and suggest what may useful for them in the future and hopefully see how we can work together and support each other in getting the message out about how important organ donation is to the younger generation.

I'm off down to London early on Tuesday morning for a meeting at 2.30, my mentor Oli Barrett is coming with me, so it will be great to see him again. Me and my folks are then hoping to see a show in the west end that night by getting last minute tickets from the box office in Leceister Square. Then back home on the Wednesday... I will be sure to update you next week about how I got on at clinic and how the meeting with the DCSF went.