Saturday, 31 May 2008

So I got the date for my procedure, its the 12th of June, which is the week I go back to my placement, typical! I received the letter a couple of days ago and it says that I need to be at the ward for 9.00am and should expect to stay one night, however yesterday I received two more letters (all about the same thing) one from the nephrology and one from the radiology department and one of them said I had to be at the ward for 7.30am!!!

My mum rang up to check which was correct and just my luck its the 7.30am one, due to them having to take bloods before the procedure is undertaken! I also asked mum to ask If I was able to eat normally the day of the operation, but guess what, no, I have to have a light breakfast at 5 o clock in the morning!!!! I don't think I'll be able to stomach that! I also need to ring the ward and ask when I need to stop taking my asprin tablets (these are used to prevent clots and stop strokes) If I were to take these as normal before my procedure I could bleed a lot (as it thins the blood) and of course, I don't want that!

So I'm hoping all goes to plan, and the procedure is a sucess. I'm going to do my best to try and not stay in over night! I have been known to get dressed, put make up on (extra blusher) and straighten my hair to make myself look fit and well to go home, even if I am feeling rotten! But hey its worked before and I'm willing to try anything!

I have been in touch with Uni and have told them the date of my op, they have been helpful, but still insist on me completing 144 hours, they won't budge on this. I'll just have to squeeze my hours in, when I'm feeling up to it, but obviously I'm not going to go back too soon, as I don't want to risk messing up my Fistula. I'm aiming to work the Monday, Tuesday and Wednesday before the op and then the Wednesday, Thursday and Friday the following week after the op, but we'll see!

So I'm enjoying my 2 weeks off, not really done that much, just making the most of relaxing and conserving my energy for when I go back to placement!

Saturday, 24 May 2008

So after the shock of Wednesday's scan I've accepted that theres nothing I can do about it and the procedure is for my own good! Not that I was going to refuse it, its just that I haven't been in hospital since February 2006, I can't stand the place and feel like its one step back having to go! However the Fistula is my lifeline, it keeps me alive and if that gave up, well I would be b***ered!!!

The radiographer and consultant explained that the aneurysm in my arm is causing the big bulge in my arm (which I hate) or as the nurse said "your arms a bit chunky isn't it!"- charming! They said the bulge will just keep getting bigger if I don't have the procedure, which obviously I don't want as it already looks odd at the minute, I don't want to draw anymore attention to it if possible! The kids are still fascinated at my work placement, I haven't plucked up the courage to tell them the "whole" truth yet, after all they are only 6/7, although I haven't been covering my arm up which is a step forward and if any of them ask I just say I've had an injection and it bruised a bit! To which they respond "ewww gross" haha! I can't disagree though, it's not a pretty sight!

I'm a bit worried about how I'm going to cope with my work placement if I get called in for the op, as I need a specific amount of hours undertaken to pass! I have 2 weeks off for half term now so hopefully the procedure will be done before I go back and if not I'll have to squeeze the hours in or Uni will just have to like it or lump it, my health is more important!

So today I have spent the day relaxing and doing some uni work at my bro's house while my mum, dad, bro and his wife decorated the nursery, pink of course, much to my brothers disappointment! Then I spent an hour waiting for my niece to wake up so I could have a feel of her kicking but no joy, I can tell shes going to take after my bro and love her afternoon naps!

Just watching the Eurovision (can't believe I've just admitted that) some of the entries are horrendous!!!

Enjoy the rest of your weekend...

Wednesday, 21 May 2008

So I have just got back from the scan of my fistula and the news wasn't as good as I had hoped. Turns out I have an aneurysm (big vein) then an area of stenosis (narrowing in the vein) that needs to be widened so I need a little operation. The procedure is called a fistulaplasty or an angioplasty and will include the injection of dye into my fistula and the use of an x-ray machine to watch the dye go in (fluoroscopy machine) they then see where there is the stenosis and insert a balloon to expand it in order to open it up. I have had this done twice previously, so I know what to expect but I also know that it hurts too!

So that's that then, they are going to be in contact in the next few days and I will go in, in the next few weeks! Hopefully they'll let me out on the same day so I won't need that much time off from work placement.

After the scan we went to see my transplant surgeon, nothing new to report there really. Mum of course made sure that I am actually activate on the transplant list (she worries too much) which of course I was and have been since 08/08/05...

Tuesday, 20 May 2008

So my arm is still purple but not as sore as it was which is good, it looks worse than it is. Dialysis has been ok and they have been managing to get two needles in. As I said before the nurse has advised me to go for a scan of my fistula to make sure all is ok. My mum rang up the Royal Liverpool University Hopsital (RLUH) ultrasound department yesterday morning but they said that I would need an official referral from my dialysis nurses or my consultant. My mum then rang the dialysis unit to see what to do next and the unit manager took it from their and rang my consultant.

While all this was happening I was at work unaware of the goings on. I came home at dinner (as usual) and the unit manager rang and said get yourself to the Royal before 4 o clock , the consultant wants to see your arm! I started worrying that he was worried and also anxious that I would be unable to return for my afternoons work at the school. My fistula is essential for my survival basically so it was vital for me to get it looked at! My consultant is lovely and reassured me that all was well which, thankfully, it was. He tried to arrange for me to get a scan of my arm there and then but this wasn't possible as the radiographer had gone home.

The ultrasound department rang today and I am going to have the scan at 10.00am tomorrow and then go on to clinic to see my transplant surgeon at 10.45!

So today we have been looking after Peter again and have spent the whole day laughing, he is so funny although he is getting good at tantrums and giving evil looks!

Anyway fingers crossed the scan tomorrow confirms what the consultant said and everything is A ok with my arm.

Saturday, 17 May 2008

Had another really busy week this week, with working, looking after Peter and baby shopping!

I worked all day Monday and then went straight to the hospital for dialysis.All was going well until the machine started pumping my blood around. The needles were in but I must have moved my arm slightly and the pain was excruciating. My fistula had blown which means the needle had gone out the other side of my vein resulting in a swelling on my arm which the nurse kindly went and got some ice for. It also meant the next day there was a huge bruise to match the other one the nurse had given me the previous Monday! So my arm is dark purple at the moment and quite sore but hey these things happen. The nurse has advised me to go for a scan of my fistula to make sure its still working ok. My mum is going to ring up on Monday morning to see if there is any chance I can go on Wednesday as I am already heading up to the Royal Liverpool Hospital to see my transplant surgeon! So will keep you posted.

This is my arm below (not a great photo as I took it myself with my left hand) ... the top bruise is the most recent from last Monday and the bottom bruise is from the Monday before, it's still a bit swollen and quite hard to the touch, so not a pretty sight really... hopefully it will clear up soon!

I Tuesday looking after the little boy Peter again, mum and I took him to Tumble Tots were he ran round like a mad man yet again! We then met my dad at a local park called Walton Gardens, were we had a picnic, played on the park, went round the little zoo and had a ride on a little train, much fun was had by all!

On Wednesday the class I am working with went on a trip Pond Dipping, I kindly offered up my mum and myself as volunteers, we had a great time, the weather was gorgeous and the kids enjoyed getting stuck in finding all sorts of disgusting creatures in the pond! Mum asked my supervisor how I was doing and if I was getting on with the kids ok, my supervisor said I was doing well and had got the balance right, not being too friendly with the kids. However Mum called me by my first name in front of the kids and so they spent the rest of the day calling me Holly and Miss Holly instead of their usual Miss Shaw! So the overfriendly thing had gone down the pan! I worked the Thursday morning including my first experience of watching the class doing P.E, which was fun!

So by Friday I was wiped out, so treated myself to a long lie in!

Today I have been baby shopping with my Mum and my brothers wife Fiona for things for the nursery. We went to a carpet shop to choose a carpet and then went on to Babies R Us to get bedding, curtains, blankets, and lots of other exciting things! Fiona is looking really well and the bump is growing by the week! (I had a sneaky feel today!)

No plans for tomorrow, just relaxing before another weeks work. It's tiring but I'm thoroughly enjoying every minute and I'm really pleased I've not had any time off sick! Fingers crossed it stays that way...

PS. I have added some photo's to some of my previous posts and also a few new links to the right hand side if you fancy taking a look :o)

Saturday, 10 May 2008

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!

Wednesday, 7 May 2008

So on Monday I went for dialysis and there was a nurse on shift that is new to the unit, I don't want to say too much but put it this way we haven't set off on the right foot and not seen eye-to-eye on a few things... she was putting me on the machine and I could tell she was nervous (her hands were shaking) this is not so good when your about to stab someone in the arm with a huge needle! She couldn't get a blood flow, but proceeded to keep stabbing me a twisting the needle to see if it would come, in the end after about 8 attempts she decided to
call the other nurse over to do it, who succeeded first time! I know they've got to learn at some point, but I don't really want it to be me that she practices on!

Anyway after the session the nurse that managed to get the flow took me off and said that she suspected the previous nurse had blown my fistula (meaning she had gone in one side of the vein and out of the other) hence leaving me with a swollen and bruised (unsightly looking) arm! Which I wasn't impressed with as I had joked to the nurse about wearing a sleeveless dress for my birthday meal out, I still wore the dress but felt really self conscious of my arm being in sight and in the photo's!

So yesterday was my actual birthday and it was a hectic day. The folks and I were babysitting our friend's little boy Peter again. (we are doing this every Tuesday for the next 5 weeks), me and my dad took him to his usual Tumble Tots session where he went absolutely wild, running around like a little mad man! It's a fab set up, squishy things to climb on and wooden climbing frames followed by singing songs however the adults were doing the songs (with actions) while the kids were either running riot or just standing there (probably thinking to themselves look at these ridiculous adults.)

The rest of the day was spent speaking to visitors and playing with Peter. Me and mum then went to the airport to pick up a friend that is visiting from Northern Ireland for her daughter's wedding! So our house was like an open house, people in and out!

So last night we went for a meal at a local Chinese restaurant with my Gran, my parents, my brother and his wife (and bump)! It was lovely, I overate but it was too nice to leave any!
I wore all my new jewelry, the ring that my mum and dad bought me, and the earrings and necklace my bro bought me (which you can see in the photo below)! Heres a pic of me in the restaurant, my dads head seems to have been replaced with the balloon, oh well!

A very busy week for me, but have loved every minute... paying for it a bit now as I have a cold and feel a bit run down! I only managed to work a half day today and decided that I would work a full day on Friday instead which I'm really looking forward to (provided I feel ok.)

Monday, 5 May 2008

Thought I'd backdate some posts to fill you in on the mad busy week I have had. It all started on Saturday with preparations for my "do" on Sunday. We picked up my MASSIVE cake from Frodsham (Devonshire Bakery) it was fab!

There's a funny story behind it as well... bit spooky actually, some of you will know that I post on a forum called the Kidney Patient Guide. Well I received a private message off a fellow poster saying they had met me on Saturday. I was very confused until I read further and discovered the lady (Emma) actually worked in the bakery and had brought m
y cake out to the car, so I'm glad she contacted me, and hopefully we'll stay in touch! (Hello Emma, if you're reading this :o) thanks for getting in touch.)

So back to the preparations, lots of party food nibbles were bought and my hair was put in rollers and my mum and dad spent the afternoon decorating the house with banners and balloons. It looked fab!
On the Sunday, I spent the day resting and conserving my energy for the late night, then spent a few hours getting ready, putting my "slap" on and taking my rollers out! My friends started arriving around 5, food was eaten and a few presents opened. My uni friends bought me a make-over photo shoot for two which is fab! Think I'm gonna take my mum, it takes 5 hours in total and I'm sure it'll be a fab day and they also got me a "build a bear" birthday bear, called tinkerbell, who appears in the photo below!

The pink limo arrived at 6 and lots of photos were taken!

We then hit the road to Blackpool and headed for Funnygirls, for those of you who don't know its a drag queen/transvestite cabaret show! However I didn't check the tickets properly and it turned out you needed to have ID to get in, everyone had ID bar one, and they wouldn't let her in. They weren't budging and in the end her dad had to drive all the way to Blackpool to drop her driving licence off! The show itself was hilarious as all the waiters were drag queens as well! You had to be broadminded as some of the comments were a bit risque but hey it was a great laugh and my dad even managed to pull one of the drag queens ;o)!

A different limo picked us up, this time a pink hummer, it was gorgeous and meant we got the best of both worlds having 2 different limos! We headed back to Warrington town centre to finish the night with a drink and a dance in a club called Level. All in all a good night was had by everyone!!!

Sunday, 4 May 2008

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!

Friday, 2 May 2008

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 or by phoning the Organ Donor Line on 0845 60 60 400.

Thursday, 1 May 2008

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 or call 0845 60 60 400. Go to 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!