The downsides to transplants and campaigning,...

When I got myself into campaigning I knew it wasn't going to be all plain sailing I also knew that undergoing a transplant wasn't going to be a piece of cake either!

I usually like to keep this blog positive and upbeat but I am warning you now this will be far from that... in fact it will probably turn into a bit of a moan, but I am hoping it will help me, and maybe some people out there understand a bit better!

Ok so the downsides to campaigning....

• It's stressful
• Things don't always go your way
• Other things move down your list of priorities - I didn't have much me time when the filming took place
  
• Putting yourself out there in the public domain is not always a good thing
• People don't always agree with what you are doing
• People aren't worried about criticising you personally or your family

Ok so the last one on this list has been bugging me quite a lot recently...

I have had some comments on my Battlefront page which have been negative and in fact hurtful... someone even went far enough to say that they would be disgusted if I had received their sons Kidney when he died. Other comments included that I shouldn't be misleading people about my campaign saying that it is a happy ending when its not, then there are people saying I am obese, and then criticisms of my family for not donating their kidney to me. All of which cheered me up no-end as you can imagine!

So I don't feel the need to explain myself, as someone very close to me would say "This is my life and I choose to love it!" but I am going to explain a bit more about my kidney transplant in the hope it will answer some of the queries above. In simple terms...

Yes, I have had a kidney transplant
No, this isn't a cure
Yes, I will always have Kidney disease
Yes, I will probably need to go on dialysis again in the future
Yes, If I am lucky I may receive another transplant.
Yes, My parents both got tested to become donors for me, they weren't suitable due to medical reasons

Yes, the anti-rejection tablets do have side effects
Yes, I suffer with some side effects...

I am loosing some of my hair (it is getting thinner by the day)
I often get shaky hands
I get burning sensations in my hands and feet
I sometimes have night sweats
I still can't walk a great distances as one of the tablets I am on causes my knee to swell
I have a moonface - due to the steroids
The anti rejection drugs mean I am at a higher risk of cancer - specifically skin cancer.

Yes, I have put on weight - I am the first to admit this
Yes, this is not all down to the steroids - But they do play a part.
Yes, I have been over indulging, but wouldn't you if you had to stick to a strict renal diet for four years?
No, I don't intend to do this forever.
Yes, I intend to get fit and eat more healthily, not because of the nasty comments, but for me and the longevity of my kidney!
No, I have never been, and never will be stick thin... DEAL WITH IT


Yes, this kidney transplant has transformed my life and the life of my family
Yes, I think this is a happy ending, I am the happiest I have been in ages - I am grateful for every single day I have been given off dialysis, even if the transplant only lasts a few years.
No, I don't intend to dwell on this any longer than it takes me to write this blog
Yes, The side effects of the tablets are a small price to pay for a happy and healthy future free from dialysis and the restrictions that come with it.


Some peoples comments do put doubts in my mind about whether I am doing the right thing putting my self out there for criticism, but I passionately believe in this cause and I am not going to let it stop me.

This is my second chance, I am going to live life to the full, I am determined to use my new found freedom to raise awareness of Organ Donation, the need for more organ donors and promote the plight of the people still on the transplant waiting list...

Tomorrows blog will be a more postivie one, I promise.... I intend to make it a complete opposite one to this one...

The benefits of transplantation and the positive aspects of campaigning... of which I can assure you there are many!

Battlefront on TV!

So Battlefront is airing tomorrow! A Documentary series following young people campaigning for issues they feel strongly about. Monday - Friday from 11.30am till 12.00 on Channel 4.

Here is the line up...

Monday 11th May
Alexander Rose - STOP gun and knife crime

Solve
This
Ongoing
Problem

Alexander was moved to do something positive out of his friends death and is encouraging young people to STOP carrying guns and knives and think about what else is out there instead of joining gangs.


Tuesday 12th May
Becky and Siobhan - Make a big change with your small change

Giving just 15p a day could change someone's life forever, Becky and Siobhan have spent time in Kenya and have seen children desperate for a chance in life, an education, but can't afford it. The girls are encouraging people to save their pennies and make a big difference both here and abroad.

Wednesday 13th May
James Greenhalgh - Down with Tuition Fees

James is fighting to abolish university fees so students can have free higher education. He believes that young people shouldn't be starting out in the world of employment owing money, or be put off going to university because of the fees. He suggests it should be free for everyone regardless of social class, background... regardless of anything!

Thursday 14th May - ME!
Holly Shaw - The Gift of Life

Follow me as I campaign for more people to join the organ donor register after my life-changing kidney transplant.

See me as I meet people who will help me in my campaign and as I organise a National Donor Day! Join the event on facebook here, to show your support!

Friday 15th May
All the campaigners meet up to discuss their campaigns with each other, they are all inspirational people fighting for worthy causes. We also had the chance to mingle with influential people that may be able to help us in our quests!
I did a speech in front of them including Ed Balls MP and Esther Rantzen, so be sure to watch out for it!

So there you go Monday - Friday this coming week, 11.30am on Channel 4!

Ireland!

Hello!

Got here safe and sound, plane was on time and it only took around 40 minutes! I am staying with my Auntie D (Mum's Sister) in Armagh and have been catching up with family!

My Uncle and Auntie (Mum's bro and his wife) are over in Ireland from Australia so this was the main reason for our visit, to see them before they head back down under! I have also seen my Mum's Auntie and Cousin and hope to catch up with other friends and relatives while we are here! We had a lovely lunch today and even had a birthday cake for me and my Auntie D as our birthdays are only 6 days apart!

Its a whirlwind trip and time is going so fast, but its good to know that it won't be long before we come back because there are no restrictions now! Everyone has been commenting on how well I look which is great!

I thought I was going to have to be doing university work while I was here but I got some great news that the submitting date for the assignment has been extended, so work is on hold so I can enjoy my time here to the full!

I will leave you some pictures of my time so far....

My Case (pink of course) ready to go on it's first trip POST transplant - the last time I used it was in hospital after my transplant

Mum @ Liverpool Airport (she won't be impressed that I have posted this)

Me and Dad doing our classic arms reach photo's - I was jealous because my face looks fatter than his so we had a second attempt (see below)

What do you think? haha!

Leaving Liverpool - Can you tell which airline we flew with?

Arriving in Ireland


Mum and her Brother (My Uncle John)


We went out for lunch- this is my dessert, YUM!


Uncle John - Checking out his Facebook

Me and Dad

Battlefront Newsletter!

HOLLY'S DONOR DAY SUCCESS

Holly Shaw, our 'Gift Of Life' campaigner, put on her national Donor Day on 7 April, to get as many people as possible to sign up to the NHS Organ Donor Register. Aided by Battlefront mentors, Oli Barrett and Amy MacLaren, Holly and her supporters set up donor desks across the country and spread the word via Twitter, Bebo, Facbook and more. Their efforts led to nearly 3500 sign ups on just that day, and Holly's campaign URL became the second most re-tweeted tweet in the whole world! Holly was featured on GMTV and on Sky News. She also managed to persuade the Metro to change their masthead for the day, by putting a heart into the "O" of the title.

The icing on the cake came at the end of the day when Holly got a phone call from Number 10, where Gordon Brown himself congratulated her on the amazing job she is doing on behalf of organ donation charities. In fact the number 10 website now has a direct link to Holly's Battlefront page. Holly also has a new logo and website, thegiftoflife.org.uk , which she launched in time for her donor day that was created for her by Airlock and is another great platform for her campaign.

Birthday!

A quick blog to thank you all for your lovely birthday messages, wishes, cards and gifts! I have been thoroughly spoilt!

I got a gorgeous Thomas Sabo charm bracelet (with 3 charms) off my Mum and Dad, vouchers, money, perfume, craft stuff, chocolates, flowers and other lovely bits and bobs!

I celebrated with my friends yesterday evening with another night of Drinking and Dancing! My head was a bit sore this morning.... and so were my feet! I had a fabulous night though as you can tell from the pictures...

Me and Sally

Me and Luke

Me and Carrie

Me and Nic

Me and Hanne

Luke, Me and Marcus

Tonight I went out for tea with the family and some friends...

Me and My Brother Andy

I am also busy packing for my trip away to Ireland, I am so lucking forward to it... my Uncle and Auntie will be over from Australia so it will be great to see them again and see other family and friends! Sadly it won't all be fun, fun, fun... I have a university assignment in for next Thursday so the trusty laptop will be coming with me and I will be working on it while I am away!

Busy Week..

Busy week ahead...

Today I am having some friends round for drinks and a takeaway before we head out into town to celebrate my first post-transplant birthday! I bought a new dress yesterday, bright pink (of course)... and my Mum bought me some gorgeous pink jewelry to go with it!

Wednesday, My actual birthday will just be a quiet one (because I will probably still be recovering) and then out for tea with the family, my brother, his wife and my little niece!

Finally Thursday... I go away to Ireland, my first flight post transplant!!! My Mum is originally from Ireland so she still has some family and friends there, it will be great to see them and also interesting for them to see the difference in me!

So a lot of firsts to look forward to this week! Of course which wouldn't be possible if it weren't for my donor and their family. They are never far from my thoughts....

Dissertation, Drinks and Dancing!

So the dissertation is done... Finally! All 10,007 words of it bound and submitted, what a relief! There were a few moments when I never thought I would actually finish it on time, due to my health and campaigning, but thankfully it all came together and I can forget about it now.... well until the results anyway! I'm not overly bothered what mark I get, just as long as I pass!

If you are interested here is the abstract from it...

This dissertation investigated what key strategies are in place within a reception setting to promote parental partnerships. Information was gathered from both parents and practitioners within the setting. The information from the parents was collected using questionnaires and the practitioner’s views were gained using a semi-structured interview therefore undertaking a mixed paradigmatic approach. Literature was reviewed surrounding the key area of focus of parental partnership which was found to be necessary for the well being, education and holistic care of the child.

The Early Years Foundation Stage DfES (2007) is essential in the reception setting and is a useful tool for practitioners to follow to ensure effective partnerships with parents. The results of this research show that there are various strategies in place within the setting to encourage parents’ participation in their child’s education and both parents and practitioners feel that successful partnership is being achieved within the provision.


Moving away from the boring stuff...We went out last night to celebrate! 8 of us went out for dinner at a lovely restaurant called MoJo's, the meal was great as you can see from the pictures... and the cocktails weren't bad either!

Dinner @ MoJo's

Raspmopolotins - Yum

We then went onto a club called The Lounge where we hired the downstairs venue and met up with people from our course and other mutual friends that were invited!

The Lounge

We then walked into Warrington town centre for more drinks and dancing!

Towards the end of a night... having a sit down becuase of sore feet (too much dancing) this is strange as pre-transplant I would always feel tired before my feet hurt, but it is the other way round now!

It was a great night.... I am feeling slightly delicate today though maybe one to many cocktails (or 5 too many)! I don't intend to make it a habit, I am just catching up for lost time....

Taxi Home - 2.15am