Yet another busy week this week!

Hospital on Monday, which was the usual long wait but the time passed as I met up with a couple of friends that I used to dialyse with!

I then spent Tuesday doing some uni work, fun fun fun! Wednesday I got up early and went to the hospital again, this was for blood tests as the level of Tacrolimus (anti-rejection drugs) was too high in my blood. I was only in the hospital for 10 minutes which was great! I received a phonecall later that afternoon to say that my Tac had to be reduced and so did my steroids (which is good, as I might start looking less like a chipmonk soon). That night I caught up with some more friends that I used to dialyse with, one who has been lucky enough to receive a transplant and one who is still waiting. We went to Fuxion in Elsmere Port for an all you can eat chinese buffet, which was delicious!

Thursday I submitted another piece of Uni work and spent the morning with Abigail and the afternoon was spent baking and decorating cakes for the Live Life Then Give Life Cake sale!
My mum and I sold the cakes in the staffroom at my old school, it was fab to see all my old teachers and they were surprised to see how well I looked! Even more fantastic was that everyone was so generous and we raised over £115 pounds!!! Here are some pictures from the day....

You can see more by clicking here.

In other news...
My surgeon has agreed to be filmed for my Battlefront campaign, along with Jessica Wales who is currently waiting for a double lung transplant, I am really grateful to them both. I am also trying to encourage some of the nurses on the ward to be interviewed and filmed too, I will continue to work on them!!!

Battlefront have also introduced a new feature on my page, it allows you to become members of my campaign, it would be great if you could visit the page and click join! My members currently stand at 303 and I would love it to be much higher if possible!

So plans for this week are; visiting the hospital for clinic tomorrow, it is also my dads birthday so we will probably go out for tea somewhere nice! I am at Uni on Tuesday and Thursday as well as being busy doing some Battlefront filming and research! All this will have to be fitted around some Uni work and work on my dissertation!!!! I am also treating myself and my folks to a night at the theatre to see Joseph at the Liverpool Empire! Soooo much to do so little time, I am really appreciating all the little things (and the big things) that I can now do post transplant, I don't know how I had time to fit dialysis in before! I am hopefully going to London next week to do some filming with my mentor Oli and Shaa (who I mentioned in a previous post) as well as the filming with Jess in Kent, which I am really looking forward to as we have never met. None of this would have been possible before... I am so pleased I can now use my new found freedom to help others who are in a similar situation to what I was in less than 4 months ago, by raising awareness of the importance of Organ donation through my Battlefront campaign....

Cakes and Flowers!

Just a quick blog to tell you about two fantastic ways you can support Live Life Then Give Life!


Live Life Then Give Life is a non-profit Charity that rely on your generosity and support to enable them to keep doing what they do. LLTGL works hard to raise awareness about the greatest gift of all: The Gift of Life by informing the public about organ donation and to support those in need of a transplant. Without funds generated by people like you, we cannot carry out the work, talks, presentations, campaigns and support which we need to do to raise more awareness and save more lives.

This valentines day How about doing something different? How about using Valentine's Day to do a good deed and make a difference?

Brighten up the day before - Friday 13th February - with a red-themed cake sale!

By selling your baked goodies in aid of LLTGL you can help us help the thousands of people out there desperately waiting for a transplant that could save their lives.

To find out more and to download promotional materials visit The Great Valentines Cake Bake page or join the facebook event!

I will be sure to post pictures of my cake sale, which I am holding in the staffroom at my old school! Will be great to see all my old teachers, should be lots of fun and hopefully they will notice a difference in me since my transplant!

Before I go there is another great way to support LLTGL for me to tell you about if you are buying flowers why don't you visit http://www.bunches.co.uk/aff/lltgl. If you follow this link LLTGL gets 10% from each bunch of flowers sold!

Emily here! I've hijacked Holly's blog (I promise she asked me to do it!) in order to bring you the most exciting news!

Holly texted me yesterday saying she had been called with the news that they might have a kidney for her. Many hours passed with no news until we got the fantastic message that the transplant was going ahead! She came out of surgery in the early hours of the morning and everything went well.

Even more amazingly, I later received a text from Holly herself! She is doing ok, a little sore and feeling “quite dopey” but is sounding like her usual positive self. The kidney has not yet started working – this is quite normal, as it often takes a little while for the new organ to get going – but please send her all the positive vibes you can.

I will update here on Holly’s behalf but hopefully that won’t be for very long at all as the lady herself will be back as soon as she can.

Thank you for all your support for this wonderful lady – we are so proud to have her as a LLTGL advocate.

Emily

Well I've had a really busy week so far!

On Monday I had to get up early and head on up to the Royal Liverpool for a scan on my fistula in my arm, I was convinced that the bulge in my arm had got bigger therefore I would need more balloons meaning more surgery! However my theory was disproved as it hadn't got bigger at all (if anything its got smaller) and the great news is I don't need anything doing, well not at the mo anyway! I need to go back in 2months for another scan just to keep an eye on it! The surgeon did the scan himself and took some measurements for the trial I am part of! So all good news!

I then had a full day at uni on Tuesday and went out for a chinese with my friends Steph and Gary! It was my turn to drive this time so I picked Gary up on the way and headed on over to Frodsham which is about half an hour away. We had a lovely time chatting and laughing away, its good to see them away from the hospital and not just talk kidneys and dialysis.

On Wednesday I had another full day at uni, a big lecture on doing my dissertation! Very scary! The headed on over to Warrington Hospital for Dialysis, which was ok apart from the end when I felt a bit funny and got terrible cramp in my big toe! It brought tears to my eyes, the most annoying thing is that I can't move (get up and stamp my feet) the nurse was very nice and filled up a rubber glove with hot water to hold onto the cramp to ease the pain! Cramps happen when you are taking alot of fluid off or taking too much fluid off.

Felt ok today, a bit tired but not too bad, I think its all the early mornings and uni catching up with me. I went again today, just for the morning and then this afternoon we were babysitting our friends little boy Peter. We had fun playing trains and watching in the Night Garden. Andy brought Abigail round for an hour as well which was nice but they had to make a quick dash for it as Abigail was having a bit of a tantrum (hehe starting early)!

Also had a phone call this afternoon from Kelly at Raw Television (the battlefront campaign) she has asked me to fill out a CRB form online and I need to take my Identifications to the post office ASAP for them to check them, this is necessary for all the people that finished in the top 10. Kelly then went on to say that it was even more important that I do the CRB quickly as I had made the judges top 3!!! I need to speak to a psychiatrist/psychologist (can't remember which) on Monday at 4pm to see if I am a suitable candidate to make that coveted 20th spot inthe Battlefront! Really happy about this, just need to wait till 3rd November to see who wins!

Finally my plans for next week are...

On Monday I'm excited to say Emily from Live Life Then Give Life is coming to stay the night as she is up in the North West to do a talk at the Manchester Royal Infirmary on Tuesday. I might head up to Manchester in the morning to help her set up the LLTGL/Organ Donor stand before I go to uni in the afternoon (Can't wait to catch up Emily). Talking of Live Life Then Give Life they have a great new blog which you can visit here, I feature in their latest blog!

On Tuesday night I'm at my friends birthday night out, we're going bowling and then heading into town for a few drinks.

So thats all the gossip really, will keep you updated with the Battlefront competition!

Hi everyone! Wow what a busy few weeks... lots of things going on!

I'm enjoying being an Auntie and have been round to visit Mum, Dad and Baby lots. Its actually my Bro's birthday today so bought him a cake from Abigail saying "Happy Birthday Daddy, Lots of Love Abigail!"

The first bit of news is that Live Life Then Give Life won the Charity Times Award for "Campaigning Team of the year!" So big congrats to them, they do a great job of raising awareness of organ donation through talks and the media etc and supporting people who are waiting for a transplant (I know this first hand) The judges at the awards said they were"an outstanding campaign made up of many effective and innovative strands and approaches, achieving great success”! I say here here!

In other news the Battlefront campaign (on organ donation) is going great and I have been at number one from about 2 days after I uploaded it which is fantastic, so if you have voted, thank you I really appreciate it. Heres a bit more about the campaign...



"Did you know that 1000 people die every year because of the shortage of organ donors in the UK? In 2005 I went on the kidney transplant waiting list after a sudden illness caused kidney failure. I'm now kept alive by a dialysis machine which I’m attached to 3 times each week. For many others on the waiting list this isn't an option - for them an organ transplant is a matter of life and death. My campaign will raise awareness of organ donation and encourage more people to think, talk and do something about it. As a result, this campaign will save and transform lives, perhaps even my own. Waiting is tough! However I have seen the difference a transplant can make and this gives me hope for the future that I will be able to do the things I have dreamt of."

I have had loads of comments which are lovely to read too, the entries have closed now but you can keep voting until the 8th so keep going if your computer allows you to do it more than once! If you haven't already done so please vote here. An article appeared on a local website about my campaign, you can read that here. I get a phonecall on the 9th/10th to let me know if I have made it into the top 10 and if so then its over to the judges. So I'll keep you updated!

I also started back to uni this week, Its scary to think how the time has flown! I can't believe I'm in my 3rd year, doing my dissertation! Next year I'll be out in the scary wide world! So this is were the hardwork starts!

On Saturday me and my folks went to Blackpool for the day which was lovely, we went in the tower to see the circus which was fab but some of the acrobats left my heart in my throat!

Me and Mum on the Pier!

Me and Dad on the Pier!

On sunday me and my friend Hanne along with her Daughter Ellie went to the open day at the local firestation, we pretended that we were taking Ellie but in reality we were looking for hunky fireman! We were really disappointed as they were all old! Ellie enjoyed the afternoon though and even got a sit in the fire engine!

Me and Ellie in the Fire engine!

On Tuesday night I met with the lovely Emma and Brad from Live Life Then Give Life! We had a lovely evening of chat (some intellectual and some not so) and a meal! We talked about LLTGL and the battlefront campaign, thanks for all your help Em. I have invited them to come up for a weekend in the future (Em if your reading this, I hope you take us up on the offer.) It feels like we have known eachother for ages and yet have only met twice, It would be great to spend some more time together! Heres some pics....

Emma, Me and Brad

Me and Emma

On the health front I've not been to bad, a few weeks back the nurses at dialysis were a bit concerned about my high pulse. They told me to go to my GP which I did, she checked it and it wasn't too bad but ordered a TFT blood test (thyroid function test) which came back normal, so everything is fine. I started getting a bit worried when one of the dialysis nurses said "Have you ever seen a heart consultant!"

As for my Fistula its still a bit sore on needling and you can still feel the stent under the skin, I will be asking the surgeon about this when I go and get it scanned on the 13th. I'm also seeing my dialysis consultant that week on the 15th so I'll see how everything is ticking along then. This months clearance was 75% which is good for 3 hours and the highest its ever been for me.

Sorry this blog has been a bit bitty with news...

Just a quick blog to do a bit of plugging...

The Live Life Then Give Life guys have set up a new forum to all those affected by transplants.


Pre-transplant
Post-transplant
Charities and organisations
Donor Families

Come along and have a chat!

http://www.intoto.org.uk/forum/

Thanks x

I had an amazing day on Sunday!

We left the house at around 11.30 after a few detours we did finally make it only to find that neither Emily and Emma were there yet anyway! They both turned up about 15 minutes later along with Emma's husband Brad! It was great to meet them all, a little strange as we keep in contact via the internet and I felt I knew them already!

The tournament itself was organised to a T and went without a hitch, thanks to Paula (Ste's mum, who I mentioned in my previous post). The Tighe family made a courageous decision to donate Ste's organs after his death, he saved a total of 5 lives and his legacy lives on in those 5 people today! What an amazing gift to give!

We sold lots of ducks in aid of LLTGL for the Great British Duck Race , if you want more info click here.

We also managed to sign at least 30 people up to the Organ Donor Register, so if one more life has been saved due to Sunday thats fab! If you want to join them you can register here.

All in all it was an amazing day and I met loads of great and inspiring people that make you feel greatful for what you've got! (Thanks Em, Em and Brad, much love x)
Will leave you with some pictures....

Emily, Me and Emma!

Brad wanted some peace and quiet, we lasted a whole 10 seconds!


Emma, Brad and Emily

Emma, Me, Emily and Paula (Ste's Mum)

P.S Quote of the day.... "I don't mind becoming a donor, as long as they don't take my sausage!"

So I've finally got my uni assignment done! Yay! That means this time next week, I'll be finished for the summer, WOO HOO!

Back to other things I'm really excited about tomorrow as there is a big fundraiser taking place in Liverpool for Live Life Then Give Life! We are going to hand out lots of organ donor leaflets and hopefully sign a few people up as well! It is held annually in memory of a special young man called Ste Tighe who you can read about here. The event is called the Littlewoods Ste Tighe 5-a-side football tournament and has featured in a local article which can be seen here.

All the funds raised will be going to Live Life Then Give Life, last year they raised £3500 so hopefully we'll be able to match it tomorrow! The local press will probably be involved too which will be good. Another exciting thin about tomorrow is that I will finally get to meet up with Emma and Emily the people who run LLTGL, I talk to them so much and feel I know them yet we have never even met, so that will be fun!

Anyway will let you know how it goes and how much we raise for a great cause!

Last night on dialysis the nurse took my dressing off which was stuck like glue to my skin, my eyes were watering it was so sore when she was pulling it. I was left with a lovely red mark were the top layer of skin had come off. She then decided to clean it up by putting pink disinfectant fluid on it which stung like crazy!!!

The wound is just a hole were the tube was inserted, it didn't need any stitches so should just heal in a few days, I have a tiny plaster over it, as I was scared it would get dirt in it or get infected. My arm is fine today, no bruise and no pain which is great and I think warrants a shopping trip to the Trafford Centre, to look for some pink shoes to go with my outfit for a wedding I'm going to in a month (in Ireland)!

I got some Uni results back for some of my assignments yesterday and I'm pleased to say I have passed my 2nd year!!! Not worked out at what level yet, I think it may be a 2.1 I think, I find out on Monday for sure!

Anyway really pleased that the op wasn't as bad as I thought it was going to be and I'm even thinking of going back to work placement on Monday! No other goss to tell really, other than I may have some exciting news to tell you soon to do with Live Life Then Give Life...

Watch this space.....

My first official duty as Live Life Then Give Life North West advocate took place today...

My mum prompted me to email in to a programme called Sunday Life that was discussing the issue of organ donation! I did this last night and sat down to watch the programme this morning not expecting a response to my email but to my surprise the presenter read it out!!! To say I was chuffed was an understatement! Heres what Louise Minchin said...

"Thank you Holly Shaw for your email as well, she says she is waiting for a kidney transplant and has recently become an advocate for Live Life Then Give Life and she says a transplant would change my life completely and allow me to enjoy the things other people take for granted. She goes on to say, she hopes todays programme will encourage more people to sign the NHS organ donor register!"


Really pleased I emailed in, and don't forget to visit the Live Life Then Give Life website!


As I type I am sat here with rollers in preparing for my night out in Blackpool tonight!

This article appeared on a Warrington Website which discusses news in the local area...

Brave Holly's plea for organ donors

Published 05/05/08 7:00 am

by James Parr

A BRAVE Warrington woman has been named as a Key Advocate for charity Live Life Then Give Life.
Holly Shaw, who suffers from kidney failure, has been named a Key Advocate for the North West by the charity.
The 21-year-old, who has been on the waiting list for a kidney transplant for three years, has worked tirelessly alongside the charity for some time and they felt it was only right her efforts were recognised.

She said: "I am really proud to be an advocate for Live Life Then Give Life. The gift of life is so important and a transplant could give me back my life; dialysis is a life saver but also a life sentence. With a new kidney I wouldn't have to do the treatment but most of all I would just feel normal and well again."
Holly, who is a student at the University of Chester, has to visit hospital for dialysis three times a week and is not allowed to drink more than 500ml of fluid a day.
She is now appealing to the people of Warrington and other North West towns to sign up for NHS Organ Donor Register.

Vice-chairman of Live Life Then Give Life Emily Thackray said: "Holly currently spends three days a week in hospital on dialysis and is only allowed to drink 500ml of fluid per day. She has a daily battle with her health but is so enthusiastic and constantly offers to do more to help us promote and raise awareness about organ donation. We are thrilled to have Holly as our advocate for the North West."

More than 8,000 people in the UK require and organ donation, but due to the severe shortage in donors, 1,000 people died last year in need of a transplant.
Anyone who wants to sign up on the donor register can do so by visiting www.uktransplant.org.uk or by phoning the Organ Donor Line on 0845 60 60 400.

That squirrel died with a nut in its hand...

Sorry for the lack of blogging, I've had a mad busy few weeks....

First I started my work placement at a local Primary School and I'm loving every minute of it, even if the kids do ask me questions I don't know how to answer in a suitable way!? I'm with year 2's so they have a wealth of information but are still so innocent at the same time, which is just right for their age. I'm doing this for the next 10 weeks and I'm working Monday all day, Wednesday all day and half a day Friday which is great as I feel ok when I wake up in the morning as I have not had dialysis the night before. So all is going well with work, its tiring but great fun and I am impressed with myself that after the 4th day I knew all the kids names in the class (29 of them)!!!

So the topics for this week have been story writing (about a magic leaf) and woodland animals, one of the activities for the kids was them looking at stuffed animals and writing down the features of them! There was a red squirrel, a badger, a fox, a mole, a cuckoo and an owl, I had to pretend these were great, whereas in reality they were pretty freaky! The teacher had to sensitively explain the concept of stuffing an animal, and that they are real animals that were once alive, some children found it hard to grasp this and proceeded to ask me questions like why are they so still? and how did this one die? but the best comment of the day was a kid who said "wow, that squirrel died with a nut in its hand, cool!" It brought a smile to my face but then I had to explain that it probably didn't die with a nut in its hand that the person that stuffed it put it there and glued it in place! Next I was told I looked like the badger because I was wearing a black and white stripy top, So I survived looking at the stuffed animals, and I'm looking forward to going back tomorrow morning and seeing what my next challenge will be!

In other news... to my surprise I appeared in my local paper today (The Warrington Guardian) I had completely forgotten that Emily (from LLTGL) had sent a press release out about me becoming the regional advocate for her charity. The paper hadn't been in touch and so I really wasn't expecting it and obviously it came as a nice surprise and will raise awareness for a great charity, the article isn't online so I will type it up for you to have a look at...



Holly Helps Organ Charity

A life spent hooked up to a dialysis machine is what faces 21-year-old Holly Shaw, but instead of dwelling on it she has thrown her efforts into working for an organ donation charity. Now her hard work has been rewarded and she has been made Live Life Then Give Life's key advocate for the North West.
"I am really proud to be an advocate for Live Life Then Give Life," said Holly, from Westbrook. "The gift of life is so important and a transplant could give me back my life; dialysis is a life saver but also a life sentence. With a new kidney I wouldn't have to do the treatment but most of all I would just feel normal and well again," She said.
Holly has been waiting for a kidney for three years. Her dialysis treatment leaves her feeling tired and nauseous and she can only drink 500ml of fluid a day. More than 8,000 people in the UK need an organ transplant. To sign on to the NHS organ Donor Register go to http://www.uktransplant.org.uk/ or call 0845 60 60 400. Go to http://www.livelifethengivelife.co.uk/ to find out more about Holly's campaign.



So thats all the news really... dialysis has been ok, diet is going well and I'm feeling quite well at the moment, I'm looking forward to a night out on Sunday with my friends and family for my 21st Birthday (which is on Tuesday) should be lots of fun, and I'll post about all the antics sometime next week!

Uni article...

When I was first asked to write this piece I was wondering how an earth I would fit 3 years of my life into one page but I’ll give it a try.

It all started just after Christmas in 2004. I was taken ill suddenly and was rushed into hospital. Various blood tests and injections took place and eventually a scan of my kidneys which showed they had shrunk and were no longer doing the job they were supposed to. I was told I had End Stage Renal Failure (ESRF) and needed to go on dialysis immediately and I would remain on this for the foreseeable future (3x a week) until a suitable donor kidney was found for a transplant. This came as a huge shock for both me and my family and we were all facing an uncertain future.

So 3 years on we are still facing that uncertain future - I am still on dialysis 3 x a week for 3 hours at a time and I’m still waiting for that phone call saying the transplant is going to take place. My mum went through the tests to see if she could become a donor for me but she wasn’t suitable. My family have been so supportive throughout this and I can’t thank them enough.

Having dialysis means I have to stick to a strict fluid restriction of 500mls per day and a special diet (low in phosphate, sodium and potassium) and also have to take various tablets each day. The dialysis itself is restrictive, time-consuming and has unpleasant side-effects. I have low energy levels, tire easily and suffer almost constant nausea. The actual haemodialysis itself takes its toll, it involves two needles inserted into my fistula which is a surgically enlarged vein (located in my upper arm).This provides access to the bloodstream for haemodialysis. The fistula buzzes all the time which is a good thing as this means the blood is flowing through it freely.

Haemodialysis removes waste products from the blood by passing it out of the body, through a filtering system called a dialyser and returning it, cleaned, to the body as well as removing fluid from my body (another job the kidneys should do) It leaves me feeling wiped out and very often light headed however it’s the only thing that can keep me alive unless I get a transplant.

It’s not all doom and gloom. I have met so many great people because of my situation, my fellow dialysis patients and of course the nurses who do an amazing job of looking after me and essentially keeping me alive. I try not to let all this get in the way of everyday life. I am enjoying my Early Childhood studies degree although I sometimes struggle fitting the work load in with my hospital visits however the lecturers have been sympathetic regarding my attendance. My social life is not that of a normal student but I can’t complain, I have understanding friends who are very supportive.

I am also proud to be an ambassador for the Live Life Then Give Life charity who do amazing work by promoting organ donation by putting on various events and selling cool T-shirts with catchy slogans on such as “I’d give you one”. (http://www.livelifethengivelife.co.uk/)

I would love to have my health and freedom back. I’ve got so much I want to do with my life but without a kidney transplant I just don’t know what the future will hold. I just have to keep hoping that one day I’ll receive the greatest gift of all – the Gift of Life. That call could come next week, next month or even in 5 years time! Over 8000 people in the UK like me need an organ transplant to save or radically improve their lives. However due to the chronic shortage of donors 450 people die each year waiting. The ever growing demand for transplants means that waiting lists are rising each year. When asked 90% of people say they agree with organ donation but only just over 20% have signed the register!

So it’s a waiting game for me now, for that phone call that will transform my life.

To read more about my everyday life as a dialysis patient and life on the waiting list you can read my blog at http://lifeondialysis--waitingforthecall.blogspot.com/

And to sign the organ donor register you can visit
http://www.uktransplant.org.uk/ or ring 0845 60 60 400

Live Life Then Give Life

So, I’ve told you all about dialysis, transplants etc let me know if there’s anything else you want to know about my condition I’d be only too happy to tell you….

Nothing much to update you on really. I’ve been really busy with uni work and assignments as I like to cram as much as I can in when I’m feeling well incase I can’t do any work the next day if I’m not up to it! This is probably not the best way of doing it but it’s the only way I can manage it.

Had a bit of a rough dialysis last night as my blood pressure dropped really low 75/45 at one point, I felt sick and had awful cramp in my leg which is maximised as I am stuck on the dialysis bed with not much room to move, whereas normally you’d jump and stamp around I cant do that because of the tubes attaching me to the machine.

So as a result my dry weight has been changed to 66.5kg now so hopefully that will help and I won’t feel as bad as that again anytime soon. So I’m feeling a bit delicate today, a bit dizzy so I’m not going into uni, I’ll attempt to do some work from home later.

Before I go I want to tell you a little bit about a charity that is close to my heart (or should I say kidneys lol)

Live Life Then Give Life was originally set up as a campaign by Emma Harris and Emily Thackray to raise awareness of organ donation and the chronic lack of organ donors in the UK. It aims to encourage people to think and talk about the subject of organ donation and to try and get them to take the proactive step of signing the organ donor register. That was back in March 2006 and they ran it by themselves until about 6 months ago when they decided that LLTGL should become a charity so that it could do much more to save lives.

LLTGL helps give those affected by transplant a voice within the media, educates the public with literature, talks and events, and supports those in need of a vital transplant, which due to the terrible shortage of donors in the UK may never come.

Well I had some exciting news… my good friend at the charity Live Life Then Give Life, Emma has asked me to be the North West advocate for the charity, this is a great honour and a privilege! Emma and Emily are an inspiration to me, Emma suffers from CF and Emily received a double lung transplant a year ago after also being born with CF, I am pleased to say she is doing fantastically well and both Emma and Emily are a great support to me. So thank you, you two! x

Click here to find out more about the LLTGL charity.