So sorry I've been quiet...

It just goes to show the difference IVY is making to my life already! I really don't know how I found time to dialyse before! I've been out and about shopping, doing uni work and on the 11th December I went in for a little operation to have the stent removed from my kidney (used to keep vein open where it is joined to the bladder), It was under General anesthetic, all went well and it was over in about 45mins.

I even a managed a night out on the town last night with the girls from uni! (Don't worry though I didn't over do it, I was in bed by 1am)! I have also been busy along with Holly's Helpers trying to push forward with the Battlefront - The Gift of Life campaign!

On the Kidney front, everything seems to be going well, my creatinine is 182 and my HB is looking more normal again! All in all I seem to have a lot more energy than before, I can cram lots of stuff into one day rather than having to pick and choose what to do, to conserve my energy! I went to the Hospital on Monday and spent most of the day there as I had to have my bloods taken before 10, had a ultrasounds scan on my fistula (which was fine) at 10.30 and then clinic at 1 (although it was nearer 2.30 when I went in.) So I'm down to weekly appointments now... although they have asked me to pop in for my bloods (before I take my immunos) so they can check the level of tacrolimus in my system, these results take 24hours and so they will be ready for when I go to clinic on Monday! This saves me going in on Monday morning to get them done and then waiting around for clinic in the afternoon.

The Battlefront campaign is coming along well thanks to Emily and Holly's Helpers, we have lots of exciting ideas on how to get the word about organ donation out there! I'm getting more hands on myself which is great. So here is what we have achieved so far...

• We are in the process of getting a logo made - (proofs can be seen on my bebo page)
• I have written to my local MP's, MEP's and even the Prime Minister Gordon Brown himself.
• We have announced our big "Sign up" day which will be 6th May 2009 and we hope to get some celebs on board with this, and of course you guys!!!
• The campaign has appeared in the National Guardian and the Big Issue.
• We now have a link to the organ donor register straight from my Battlefront page Click here to have a look. This will be a great way of measuring how many people have clicked through to the ODR via the link!
  
• I now have a mentor to help get the campaign going, Emily is hopefully meeting the man himself, Oli Barrett on Friday. Click here to read more about him!
• We have lots of videos and photos up on both the Bebo and the Battlefront pages, so go and check them out!

So if you have any more ideas on how to get the word out there please get in touch, via here, Bebo, or drop me a comment on the Battlefront page... its always great to hear your thoughts/views/opinions!

So firstly I'd like to thank you all for your votes! BREAKING NEWS: I received 1697 votes and 183 comments on my page! I really appreciate it, I eventually finished in 2nd place. I received a phonecall from Battlefront on Tuesday to discuss the campaign and it's aims.





The judges are meeting today to decide who out of the 10 makes the top 3! They will contact these people on the 14th to be told they have made it... It is then up to an independent psychologist to discuss with the top 3 the implications of running a campaign to see if they would be up to the job, I'm unsure as to whether they decide fully on the winner but it will be announced on 3rd November! I'll keep you posted...

In other news... I went for a scan on my fistula today, I was convinced that the aneurysm had got bigger so was prepared for the surgeon to say I needed it ballooning again! But to my surprise it hasn't got any bigger (which is good) and more importantly I don't need anything doing to it at the minute, which is great! I just need to go for another scan in 2months time to check again that all is ok. I'm off to see my renal consultant on wednesday morning to see how things are ticking over, hopefully all will be ok, my clearance was the highest it has ever been at my last bloods so that is always a good sign.



Finally I was asked to write another article for my university newspaper, nothing much has changed since the last time I wrote so I decided to come at it from a different angle and speak to Jen and Emily from Live Life Then Give Life and write about their experiences! So thanks to them for that!



Here's the article if you're interested. It probably won't be printed till November so you're getting a sneak preview...

A few months ago I wrote an article about how my life changed when I was diagnosed with Kidney Failure and was told that I needed a kidney transplant. Nothing has changed since then. I am still dialysing 3 times a week for 3 hours at a time and I am still waiting for that call to say a suitable kidney has been found.

A call that will transform my life. I know this from personal experience as friends of mine have received that very phone call and ultimately the greatest gift of all - the gift of life. I am lucky as dialysis can keep me alive, other people on the transplant waiting list aren’t as fortunate and don’t have this luxury, for them it is life or death.

One such person who was in a situation like this is my friend Emily Thackray aged 24 who is vice chairperson of the charity Live Life Then Give Life. I got to know her through the charity and was totally inspired by the work they do in raising awareness about the importance of organ donation. Emily was born with cystic fibrosis (CF) and In 2005 she was told that CF had damaged her lungs so badly that she would need a double lung transplant within a year in order for her to survive.

Half of the people waiting for a lung transplant will die on the list but throughout her wait Emily tried to remain positive despite facing many hurdles along the way. Thankfully in 2007 the wait was over for Emily and she received that call and had a successful double lung transplant. She would not be here today were it not for the brave decision and generosity of her donor family. Since her transplant she has had a rollercoaster of experiences including getting married.

Emily says

“I don’t think I’ll ever be able to find the words to express my gratitude to my donor family; they gave me my life back and I intend to make every breath count.”

Another friend of mine called Jen Dickinson aged 26 was also told she needed a new kidney. Just one month before she went on the waiting list she was a healthy young woman with lots of plans for the future.

She knows as well as I do to be told that you must be attached to a machine in hospital 3 times a week for an indefinite and unknown amount of time is devastating. Jen felt her future suddenly seemed very bleak indeed. She, like me, was dependent on drugs, hospitals, doctors and machines. She started thinking all the time about kidneys and transplants and the thought of the future seemed very hard to deal with.

Then one day, out of the blue, Jen received a phone call that changed her life. She has a new kidney allowing her to do things she couldn’t do before such as drink and eat what she likes. She now has the energy to do all the activities she loves and can spend time visiting friends and family. These are also things I look forward to doing in the future when that call comes to say that a suitable kidney has become available for me. I will then be able to lead a normal life and do the things I want to do.

Jen says

“The new kidney has made a huge difference in my life: I have more confidence, feel more independent and I am living my life to the full. My donor hasn't just given me a kidney, they have given me back my future.”

Although having End Stage Renal Failure has many restrictions and has impacted greatly on my life I try to remain positive and am aware that it has allowed me to do things I would never have had the opportunity to do. I have met so many great people such as Emily and Jen through the Live Life Then Give Life Charity (of which I am the North West advocate) .We are all working towards the same goal in raising awareness of organ donation and trying to increase the number of people signing up to the donor register. Hearing and seeing the difference that a transplant can make to people’s lives gives me hope for the future that one day I will get the call and then I will be able to do all the things I have dreamt of.

I have also entered a campaign in the Battlefront competition (http://battlefront.co.uk/campaign/the-gift-of-life/) to raise awareness of this topic and to get people thinking, talking and doing something about organ donation. I have been astounded at the support and numbers of votes it has received. My campaign finished in 2^nd position out of a possible 62 meaning I am still in with a chance of appearing on a TV programme to be shown on Channel 4. I am determined to make it through to the final stages of the competition as I know this campaign really will save lives maybe even my own.

Thanks again for all your support for my Battlefront campaign it really is appreciated! x

Had a really busy week again this week but kind of feel like I haven't done anything productive!

Had a few lunches out, one with my friend of 12years Helen (gosh I feel old), It's great to catch up now that she has graduated from uni (congrats hun) she is moving up here again to study at Law School, so it will be great to have her close again. I have been on a few shopping trips this week too and bought a lovely dress today, I have no idea when I'm going to wear it, but it looks nice so I couldn't help myself.

Today my mum rang an old school friend and told her to come and check out my blog (hello Una if you're reading this) mum told her to google me, and so I was intrigued and decided to see what would happen if I googled myself (sad I know)! Turns out all the old newspaper and online articles are there including some that I had no idea about, although all publicity about organ donation can only be a good thing. If ya want a nosey the articles are here and here.

Thats all the news with me, not very exciting I know, dialysis has been fine, BP and weight seem to be stable and new tablets (Alucaps) seem to be fine! I haven't heard off the Royal about the procedure on my arm yet, I hope I do soon as the arrival of my neice isn't too far away and I don't want it to conincide with that! Only 25 days to go.....

Two blogs in one day, aren't you lucky....

Yesterday I had a rough day, I was sick in the morning, I think this was due to the over exertion the day before with all my walking. It was well worth it though as it got people signed up to the organ donation, raised awareness of Kidney Disease and raised money for Kidney Research!

So today and yesterday I have had a cough and have been feeling a bit chesty, I am going to see my consultant tomorrow anyway, he usually checks my chest and heart so he'll be able to tell me if I am A-OK! I am also going to ask him about my Fistula (in my arm) as since my operation I feel its getting bigger (where the needles go in) maybe its just me as I am really aware and self conscious of it! Would like to put my mind at ease though and ask him to have a look, as the surgeon that did the procedure on my arm said that I should have a scan and check up in a month but I have heard nothing since and its been a month already!

I am also going to ask the consultant about my aranesp (this is an injection into the machine to help maintain the correct level of HB in the blood) as I am going on holiday to N.Ireland on Saturday and need to take some Aranesp with me as I receive it once a week, this needs to be refridgerated at all times! I am also unsure as to whether I should take it in my hand luggage as I don't fancy getting stopped by security on the way in, carrying a syringe that looks a bit dodgy! I'll see if he will give me a letter to go along with it!

Really excited about going away on Saturday as it will be the first proper holiday since I was diagnosed and more importantly the first time my Mum and Dad have been away! We are staying with my Auntie (Mum's sister) and we are attending a family wedding next Thursday so that will be good to catch up with everyone! I will also have 3 dialysis sessions while I am away at Daisy Hill Hospital in Newry (sounds nice doesn't it), I am a little nervous about this as I have never dialysed away from the unit before and am a bit weary of new nurses needling me, but I'm sure it will be fine.

So today's news... I went shopping for a new digital camera to take with me to Ireland, I ended up getting this pink one, it's charging up at the minute I can't wait to try it tomorrow. Also It is my Gran's 84th Birthday today and so she and my brother and his wife came round for tea (a Chinese, with no salt for me, my contribution to the renal diet.) We got her a cake and sang Happy Birthday and she seemed to like all her presents!

Earlier today Emily from Live Life Then Give Life asked me earlier today if I could get hold of a video camera and film a video diary of life on the transplant list to present to the treasury. She said I would have to make it really emotional and sad, not too sure I would be any good at it because I think I'm quite a positive person, put waiting on the list to the back of my head and try to lead a normal life as possible! So not sure how convincing I would be to the treasury, haha! Emily also sent out some press releases to some local newspapers about transplant week and how I am waiting so maybe they will be in touch this week, to get the topic of organ donation out there, and get people talking about it.

National Transplant Week

This week marks the 18th National Transplant week, the theme of the 2008 campaign is "Jump on Board" the NHS Organ Donor Register and join the 15million people that have already signed up.

Transplants in Mind's aim is to get more than 80,000 new names on the Organ Donor Register. The launch is today at the London Transport Museum, the donor bus will be there encouraging people to sign up and volunteers will be on hand to offer information and advice.

Since 1 April 2008:

• 220 people have donated organs
• an additional 452 people have donated corneas
• 661 people have received the gift of sight
• 655 people have received transplants
• 7,757 people are still waiting for transplants
  

To join the Organ Donor Register and join the 15,500,596 people – 25% of the population who already have click here.

Thanks x

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 I went to a wedding reception straight from dialysis, Mum had been to the wedding in the day but I was working all day so I couldn't go. It was a lovely night, the weather was so nice we were able to sit out in the garden of the pub! It wasn't a late one, we were home by 10.30 as we had an early start this morning!

The picture below is of me (looking a bit dopey after dialysis) and the bride!


We had to get up early because me and my parents had been invited to go to a 3d scan of my niece! It was absolutely amazing, so clear and detailed, you could see all her tiny fingers and toes, it even looked like she was smiling at one point! We saw he heart and heard it beating too! I paid for the scan, DVD and pictures as a pre-baby present for my bro and his wife. I can't wait for her to arrive, only 102 days to go...



In other news, I received an email from the charity Transplants In Mind telling me that I feature in this months edition of their newsletter! Not too keen on the picture but hey if it gets one more person to sign the organ donor register than thats fine by me! To read the news letter click here, I appear on page 4!

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.

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