Some Goals and resolutions

• To make the most of my “Gift of Life” and enjoy being free from dialysis
• To go on holiday (I haven’t been abroad since I started dialysis)
• To go back to Uni, complete my dissertation and hopefully graduate with my friends
• To visit Emily T in London and go shopping!

Some resolutions and goals for my Gift of Life Battlefront Campaign

• To video blog as much as we can!
• To get some celebs on board
• To get our logo and pledge out there to as many people as possible.
• To visit as many schools/uni’s as possible to get the word out there about Organ Donation
• To meet up with Mentor Oli to discuss how to take the campaign forward
• To work on changing the law so that people have to make a decision on whether to donate their organs one way or another? No one suggests which way, but to change it so it is compulsory to make your wishes known - be it yes or no.
• To create as much hype as possible about 6th May. (The sign up day)
• To get as many people as possible to sign the Organ Donor Register

x Thanks for all your support in 2008 and all the best for 2009! x

Hey everyone! Hope you all had a lovely christmas day I spent time with my family, enjoying my first Christmas in 4 years free from dialysis and the restraints that came with it. I was able to eat and drink what I wanted and had lots more energy to enjoy the day and the festivities! (I was the only family member who didn't need an afternoon nap) Click here to see some pictures of Ivy (my kidney) and Abigail's 1st Christmas. We popped open the champers, that mum and dad received 3 years ago (for their 25th wedding anniversary). They said they would save it for the first christmas after my transplant! But whilst celebrating, thoughts of my donor weren't to far from all our minds, We released a Christmas balloon in memory of my donor to let them know we were thinking of them and their family. As obviously while we were celebrating my first Christmas with my transplant, they were experiencing their first Christmas without their loved one who gave me the greatest gift of all - The Gift of Life x

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!

Battlefront

Here is my slide show to promote my battlefront campaign - The Gift of Life... enjoy and please pass it on.

Also here is a link to my Battlefront bebo page... click on it to get all the latest updates on the battlefront campaign and to read my bebo blog!

HollyBattlefronthttp://www.bebo.com/holly_thegiftoflife

Thanks for your support x

Hello strangers!

I feel really bad for neglecting the blog but things have been a bit manic recently!

So a quick update....

On the kidney front, things are going well, results are all going in the right direction and more importantly I'm starting to feel the benefits! I have had 4 doses of IV Iron to boost my Hemoglobin levels which are low. This seems to have helped, it's still not normal but it is much improved, I am also meant to have a drug called aranesp which will also build up my HB but my blood pressure has been too high for me to have this so we have to wait for that to sort itself before I can start on the aranesp. I have been put on 2 different blood pressure tablets to try and lower it but the docs think the main reason for it being high is the amount of fluid I have on board. At my worst I was 10kg over my dry weight!!!! Luckily I have been put on water tablets (frusimide) to get some of the fluid off, this is doing the trick and I can finally see my ankles!!! Sadly it won't do anything for my steroid "Moonface" but hey hopefully that will go down when the steroids are reduced, and anyway its worth it!

The downside to this is I'm going to the toilet every 15minutes, meaning I can't go out much, but hopefully I won't be on them for too long and I'll be able to get out and about again soon!

I went to the hospital today and I didn't even have to wait around for my blood results, which is great!!! They said they would ring... they haven't but I'm not worried as no news is good news! They told me I don't need to go back till Thursday so I'm down to twice weekly visits which is great! I've also been booked in for a little operation (day case) on 11th December to get the stent removed out of Ivy (my kidney). This will be done under General Anesthetic, but from start to finish should only take half an hour. Also going for an ultrasound scan on my fistula on 15th Dec, even though I'm not using it anymore it still has to be checked to make sure it's still working and not narrowing again.


In other news the Battlefront campaign is really going full steam ahead, thanks to Emily and "Holly's Helpers" to find out more click here. I also have a bebo page up and running so to have a nosey at that too click here and add me as a friend! All ideas are under wraps at the minute but I'll let you know as soon as possible about any developments!
I'm also busy trying to do a piece of uni work so I don't get to far behind! So its all go, go, go at the minute, I don't know how I managed to fit in dialysis before, the freedom is great! I can't believe its only just over 5 weeks and the difference is noticable already.

I promise to update this more often! Thanks for all your supportive messages! x

For more information on my Gift of Life campaign, CLICK HERE. Thanks for filming this Emily and for holding the fort while I recover! x

Hey guys! Holly here!

Just a quick update, I visited the hospital on Monday, Wednesday and I am due to go again tomorrow. All my results seem to be going in the right direction, my creatinine is slowly coming down, my Heamoglobin levels are going up and so is my White Cell count! It's great to be home although I feel like I should be able to do more, my tummy is still feeling uncomfortable and I'm getting tired really easily. I'm bloated from the surgery and have a big moon face due to the steroids I am on to kick start my kidney (which I have named Ivy by the way). But all these things are a small price to pay for not having to dialyse and of course nothing compared to what the donors family are experiencing at this time and who made all this possible by their courageous decision.

I will get round to backdating my blog soon about my transplant journey, but until then, take care x

A message from Holly's mum last night passed on the good news that her WBC count has started to come up (slowly) of it's own accord - woohoo! This is really good news and confirms that it was the drug that caused the sudden rapid drop. Hopefully today she has continued to improve. She was awaiting an iron infusion too (to give her more energy) but they were having trouble getting venous access, so I'm unsure if she's received that yet.

I did some filming today! There are so many amazing people out there who want to help Holly with her quest that a few will be taking a far more active role....namely by being "Holly's Helpers". Watch this space to find out more! I did my first bit of filming today (ie, me hiding behind the camera and learning to work the thing!) so will get that up here asap so you can find out more :)

As always, keep spreading the word, checking in and passing on your wonderful messages of support....I know how much this is spurring Holly on so thank you :)

Emily x

Morning folks,

Emily here again today :)

Bit more information on Holly's latest hiccup: one of the immunosupressant drugs she was on caused a sudden drop in her white blood cell count (WBC count). They stopped the drug immediately and in order to bring it back up asap they are starting her on a specific treatment to help.

Having a very low WBC count like Holly does right now can be dangerous as it means the body is very vulnerable to infection as it has no defences, which is why she's in isolation and why the docs are working nice and fast to build some resistance back up again.

Understandably Holly is feeling pretty down about this as just as the kidney starts working, there is a new setback. However hopefully this new drug will kickstart her WBC count again and help Holly rebuild some defences asap.

Thanks for your continued wishes and support with her campaign!

Emily x

Emily here :)

Quick update on Holly - that kidney continues to slowly rise from its slumber which is fab stuff! On the downside, Holly has been moved to isolation as her white blood cell count has dipped a bit. This is due to being heavily immunosupressed at the moment. She's feeling a bit poorly so any lovely messages of support would be very much appreciated I'm sure.

I went up to meet the battlefront campaign team today on Holly's behalf - they were all so lovely, eager to hear how Holly is doing and all asking me to send her lots of love...the main aim now is to really get Holly's campaign up and running for her!

Emily x

hi all!

Emily here again, just introducing myself properly to Battlefront campaigners and supporters. I am a double lung transplant recipient and am friends with Hols not only due to our transplant backgrounds but also due to our fabulous ability to pout with style ;)

I am helping Holly with her Battlefront campaign until she is up and running at full speed again.

News over the weekend was good kidney-wise (Holly has not needed dialysis for a few days now so it looks like the kidney is waking up!) but her white blood cell count had dropped so she was moved to isolation. Hopefully this should pick up again quickly; I will update further soon if Holly can't.

Campaign-wise, there are even more ways you can jump on board and support Holly now! Bebo users, add Holly's campaign page as a friend. On Facebook? Join Holly's campaign group!

Thank you so much for all your support; this is a once in a lifetime opportunity to get help from some of the best in the business on how to make a campaign really great - and Holly deserves this place so very much.

Emily.

I'm pleased to announce that I won the competition to be the 20th campaigner in the battlefront competition!

Everything seems to be happening at once!

You can follow the link here to catch up on all the latest news. Obviously I won't be able to do too much hands on stuff so stepping in to help me is the amazing Emily Thackray! (thanks hun) who will be holding fort until I am fit and able to take over the reigns!

Thanks for voting and all your support. On the kidney front its still not working, had a biopsy yesterday and the results showed changes (not rejection, so thats good) I have been put on steroids for a couple of days to see if that will kick start it!

Hope ya'll keeping well, lots of love x

Hey guys! Its meeeee!

I'm back in the land of the internet thanks to my Gran who bought me a dongle (usb internet connector) and my bro who set it up and brought in my laptop! So I can keep up to date on all the goss!

So news....

Not much to tell really, just got off dialysis. Kidney is still sleeping!

Weeing a little bit but not a great deal. I thought I was doing well with the pain and stopped all pain killers (tramadol and Paracetamol) a few days ago, but was in a lot of pain about an hour ago so had to ask for some tramadol!

So thats it really, obviously will update asap if there is any other news.

and thanks for all your well wishes, cards and thoughts it has been a great boost and much appreciated!

And... how could I forget... Thanks to the amazing Emily for updating on me!

And its thanks to the support from my family especially mum, dad and brother that I am getting through this and obviously the wonderful donor and his/her family that made all this possible by their courageous and kind decision.


lv Holly x

Yesterday was definitely a good day as I got a few texts from the lady herself!

Firstly her mum texted saying Hols wasn't as sick or drowsy as she had been previously and was looking much more like herself, and then I received a few texts from Holly, saying she's not feeling too bad and that she managed to have a shower (any post transplant people reading will know how vital the shower bit is to start you on the road to feeling human again!) She has also been walking around with the physio and did some stairs yesterday!

Kidney still fast asleep but scans continue to show it looks absolutely fine. Anyone got an alarm clock...?!

Emily

There wasn't much to update yesterday; Holly was still in HDU but all the drains and necklines were removed (woo!) Another scan of the kidney revealed that all is well, even though it's still being stubborn.

Today Hol's has made progress and been moved out into the Transplant ward which is great! This naughty kidney is STILL not working however, and so she remains on dialysis. She is still feeling pretty sick too, so needs lots of warm thoughts heading her way.

Thank you for your ongoing support,

Emily

Holly's not had such a good morning, with sickness plaguing her and making her feel a bit rubbish.

The kidney is still not working but the good news is they did a scan to check everything and it all looks fine. She's on dialysis at the moment just to support her body till this kidney decides to wake up. Hopefully just a matter of time and as her mum said "it's now a waiting game".

Holly is in the Royal Liverpool Hospital in ward 9A if you would like to send a card.

Thanks for your ongoing support :)

Emily

Emily here again :)

Update from Holly's mum: Holly is still doing well. She sat out of bed for a bit this morning (yay Holly!) but felt quite weak and is still having some pain. She seems better tonight and everything is generally moving in the right direction....Mr Kidney still has to wake up and start working though.

Willing that kidney to kick in!

Thank you for those lovely wishes and thoughts, and do keep them coming, they are getting passed on to Holly by her family.

Em

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

Was so busy wittering on about things that I completely missed out another hospital appointment I had been to!

It was my 3 monthly check up with my consultant on Wednesday morning (before uni) there were a few things to talk about, we discussed my tablets which I will need to change soon (my alucaps) because if you take them for more than 3 months the magnesium builds up in your bones and makes them weak. I am disappointed as these are my favourite phosphate binders (having favourites, how sad am I?) because they aren't too big and dont take much fluid to swallow. The new tablets he will put me on in a month will be BIG chewable ones that taste horrible apparantly. ewwwwww, something to look forward to! The consultant also said that my HB (hemoglobin/blood count) is low and that I would need Iron infusions to give me a boost and push this figure up! I had been feeling tired recently, thought it was just normal, it was probably down to this. He also mentioned my high pulse again, his solution is that I am unfit and need to do more excersise to bring it down, its easy for him to say, I cant exactly run a marathon after dialysis, in fact sometimes I struggle to make the car without feeling lightheaded. Finally he had a look at my arm and felt the stent and agreed with the surgeon that all was fine!

So some things to change but on the whole an O.K report! (Don't know how all this slipped my mind!

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!

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

Please Keep Voting...

Just a little reminder to keep voting for my "Gift of Life" organ donation campaign!

I have slipped from the top spot for the first time since I uploaded my campaign! I'm in 4th place at the minute, It isn't essential for me to finish first to win the competition (have to finish in the top 10) but it would be nice!

You can vote by clicking here!

Thanks x

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...

I will do a proper update in the next few days but I just wanted to ask you all a favour....

Would you please vote for my campaign to raise awareness about organ donation!


Click here to read more about my campaign and what it involves!


Thanks x

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

Hi... Sorry I've been so delayed in updating! Still on a high from becoming an Auntie! Abigail is just gorgeous, not seen her today but will pop by my brothers house tomorrow to see them all!

Now to fill you in on my Fistulaplasty, it didn't go quite to plan as the narrowing was worse than they first anticipated!

I arrived at the Royal at about 7.30 and the nurse guided me to my bed at which two other ladies were sitting so I was a bit confused, she explained that (as usual) there was a bed problem, but because my mum had rang up and said we were on our way that the bed was mine! The nurse then took some blood, asked some routine questions, gave me a lovely sexy gown and that was it.... the waiting began. Breakfast came and I decided that instead of starving myself like last time I would chance a piece of toast, which I am glad I did as breakfast came and went and so did dinner (which I didn't eat). So more waiting and more waiting, (at this point I was having a kip on the bed.) I got changed into my sexy gown that flashes your bum and eventually went down to the radiology department about 2.30pm! I went into a cubicle, signed a consent form, and a form to say I was willing to take part in a stent trial (they are testing new covered stents) then I walked into the theatre about 2.45!

I was in the theatre for just over an hour this time as things weren't totally straight forward, the narrowing was bigger than they thought, It was a bit uncomfortable when they were pushing and pulling at my arm. Next they inserted a wire, a tube and a balloon into the vein and filled the balloon up with saline! At this point my toes were curling a bit and the nurse checked I was ok as it was very painful for about 30seconds but the pain went immediately when the balloon was let down! They had to do this with 4 different balloons to ensure the narrowing had gone (the surgeon was very impressed at how well I was handling the pain and said he would have been crying - typical man) A 4cm titanium stent (which is very expensive) was inserted through the wire and into my vein, it was then opened to the size of the vein to ensure the narrowing didn't return. I mentioned I was taking part in a trial before, this process is randomised and so at the begining of the procedure an envelope was opened to see which stent I would receive, turns out it was the plain old stent anyway so it didn't really matter haha! Although I think the surgeon will still take more interest in my scans when I return.

The tube was taken out and the nurse placed pressure on the wound for 10mins in the recovery room. I didn't even need a dressing on it. I went back up to the ward on the bed (I could have walked, but they insisted) I then immediately got dressed ready to go home and they said I had to stay till 5, but they could see I was dying to get away so at 4.15 the nurse said I could go. However a friend of mine (a nurse from another ward) turned up for a chat which was nice, so we didn't end up leaving till 4.45 anyway!

My arm is ok now, I can actually feel the stent under my skin which is a bit freaky! I haven't got a bruise whatsoever which is great. The only problem is, is when the nurses are needling my fistula it is alot more painful than it used to be, they have to push alot harder (its like they are hitting a barrier, or the skin is tougher) I'm not sure if this is them having to needle through the stent or not! Hopefully the procedure has been successful and I wont need anymore work doing on it in the near future, I have to go back for a scan in a month's time, so we'll just have to wait and see! Will keep you posted!