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

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...

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!

Ok so I'm always blabbing on about family, nights out and university so I thought I would tell you more about life on dialysis (that is the name of the blog after all!) I've probably told some of you this before, and showed you some of the links before but I'll post them again anyway.





First of all, here is a picture of me on dialysis! (ignore the chocy sticking out of my bag, its one of my weaknesses)

So I go for Haemodialysis or HD 3 times a week for 3 hours Monday, Wednesday and Friday on the twilight shift. I ring up the unit at around 3.30pm to see what time my machine will be ready as this sometimes varies. Mostly it is around 5.30 so I get to the unit at 5.15 as I have to take my blood pressure and weigh myself before going on the machine. I have to weigh myself because as well as cleaning the blood the dialysis machine also removes excess fluid, the amount of fluid removed depends on your dry weight. A dry weight is your weight without any excess fluid. Mine at the minute is 67kg. (1 kilogram = 1 litre of fluid) So if I go in at 68kg I would have to remove 1 litre of fluid and an extra 500mls of washback (that is saline used to wash the blood back after dialysis) so my total fluid removal would be 1500mls. This part of the process is called ultrafiltration and the amount varies from session to session usually on a Wednesday and Friday I would take off 2litres and on a Monday nearly 3litres due to the extra day of fluid because of the weekend. This is the reason that I am on such a strict fluid restriction of 500mls a day.

So here is a picture of where I weigh myself and take my blood pressure.

Heamodialysis consists of me having two needles (quite big ones) inserted into my fistula in my upper arm. They are a bit painful when they are inserted but during the dialysis session I can’t feel a thing. So a fistula is a surgically enlarged vein attached to an artery I have two scars where each needle is inserted (they aren’t inserted in exactly the same place every time, but not far off, causing quite big lumps on my arms). Heres a picture of one of the needles that is used.

I have to keep my arm very still during the dialysis session to ensure the needles stay in the right place. I think I’ve shown you this before but if you want to see how a fistula is made and used click here, it probably explains it better than me.

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. One needle is to carry blood out of my arm and the other to carry blood back to me after.

So as well as removing fluid like I’ve already talked about, the machine’s main job is to remove toxins from my blood by cleaning it. While in the filtering system the blood flows through tubes made of a membrane that allows the waste products (which are much smaller than blood cells) to pass out through it. The waste products pass through the membrane into a dialysis solution (dialysate), then out of the machine. The "clean" blood is carried on through and returned safely to the body.

This happens over and over again throughout the dialysis session. Each time the "clean" blood is returned to the body, it picks up more waste products from the cells it circulates through, and brings these newly-collected toxins back to the dialyser (or artificial kidney – which is the white tube with the blue top and bottom on the picture) to be removed.

Fresh dialysate is passed through continuously to make the rate of the cleaning process as fast as possible.

Click here to see a picture of dialysis in action....

My machine is called Sneezy...

there are 6 beds at the unit, and 8 machines (2 spare) so they are named after snow white and each of the 7 dwarfs.

Here is a picture of the screen of my machine...

the information it shows is the amount of fluid I have removed up until that point, the time left on the machine, the amount of fluid I will take off by the end of the session and the rate it is being taken off (how much each hour) It also tells me how much blood is flowing through the machine at that moment, and how much blood has been cleaned altogether which could be over 50litres!!!

The grey round things are the pumps that spin and push the blood round, this can go at different speeds depending on the strength of your fistula and other factors. My pump speed is usually around 330, the highest I have gone is 350. The higher the pump speed the better the dialysis and the better my clearance which is how well I am dialyzing (mine is usually in the region of 70%) The machine also shows the pressure of the blood going into my arm by using a lights system, if the pressure gets too high or low the machine will beep. At the end of the dialysis session, the blood that is left in the tubes is washed back to me using saline, shown here...

So basically that’s dialysis in a nutshell. The main question I get asked is do you feel anything and does it hurt, the needles hurt a tiny bit going in but that’s it, I don’t feel a thing, I don’t feel the blood going in or out. I just sit back and let the machine do all the work I usually just watch the tele (all the soaps) whilst I’m on the machine and this passes the time. I would go to sleep if I could but there is constant hustle and bustle and machines beeping! The machine beeps if I accidentally lean on the tubes (containing the blood), if I move my arm by mistake or most importantly when the dialysis has finished.

So if you’ve got any other questions, just ask and I’ll do my best to explain.

I have uploaded some of the pictures from my trip to Ireland, click on the links below if you want to have a nosy!

Ireland - Part 1

Ireland - Part 2 (The Wedding)

Ireland - Part 3


Today I went for the ultrasound scan on my fistula, the doc went really quiet so I could tell all was not well. Hmmm interesting he said and I said interesting good or interesting bad. He replied well I'm not going to say just yet so that confirmed my suspicions. Whilst he was scanning my arm he listened to the flow of the blood through my fistula, there was also a sound of the water pipes in the hospital in the background so Mum and Dad were a bit confused as to what sound was my fistula and which was the water as they both sounded similar.

He then explained that the narrowing that had previously been widened has returned and he was worried that it had returned so quickly. So I need to go in to get ballooned again but this time I'm also going to have a stent inserted to keep it open to ensure it doesn't narrow again! So not the best news but hey it can't be helped. Here is a pic of what a stent looks like incase you're interested... The one I will be having will be about 4cm long and when it is opened it will spring out so its 1cm wide.




I may have to keep going back every so often for the stent to be ballooned aswell so the problem won't be completely solved. There is also a slightly higher risk of infection in my fistula after having the stent inserted so I'll just have to be careful about keeping it clean. I wasn't surprised to hear that I would need this done as the last time he wasn't completely convinced that it had been totally sucessful, and I could also tell myself that my arm was getting bigger again (although my mum kept telling me that it was just me, probably to make me feel better.)

I then asked the doctor the really important questions such as will it hurt more than just having it ballooned and will I beep going through airport security if I have the stent inserted, the answer to both questions was no! He then said that there were two choices of stent, a covered one and an uncovered one (not completely sure of the difference) but they are doing some trials to compare the covered one to the uncovered and measure their effectiveness. He asked me if I wanted to be part of the trial, I'm not bothered either way and even if I say yes there is no guarantee I will receive the covered one as they pick an envelope at the beginning of the procedure and whichever envelope is opened that's the stent they use.

After the scan and the chat with the Doc I went up to the transplant ward to see a fellow dialysis patient who received a transplant 10 days ago. She had been waiting for around 5 years and although she has an infection at the moment is looking absolutely marvellous, the change in her colour in that short amount of time was amazing. So hopefully things will continue to improve and she will be out and about soon.

Finally (as I think I have waffled on enough in this post) whilst I was away on holiday I appeared in my local midweek newspaper and on an online newspaper promoting National Transplant Week (Thanks to Em and Em from LLTGL for the press release.) If you want to see the article click here.

So that's all the news really, I don't have to decide about the trial till the day of the procedure and he said he would have more of a chat about it to me then. They'll be in touch soon with a date for when it's going to go ahead.

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.

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.....

I have posted a blog that I wrote yesterday, but didn't have time to post, so if your reading this, scroll down and read the other one first! Thanks!

I had my fistulaplasty op this morning....

I arrived at the Royal at about 7.30 and the nurse on the day ward immediately said have you been told about the bed problem. I started to panic that I wouldn't be getting it done today, (I hate building myself up only to be told its not going ahead, this has happened on many occasions). She explained there was no bed for me, but the procedure would still go ahead and I would just have to wait on a chair rather than a bed. By this time I was already starting to get hungry as I had been told to have a light breakfast at 5, the lady came round and served breakfast to everyone so I had to sit and watch them eat it with my tummy rumbling! I didn't mind this as I had been told the reason I couldn't have any was that I was going first! I went down to the radiology department about 9 o clock! I went into a cubicle, signed a consent form, got gowned up in a sexy gown that flashes your bum, and then I walked into the theatre about 9.15!!!

I couldn't believe how quick everything was going, even the fistulaplasty itself only took about 40 minutes! It was a bit uncomfortable when they were pushing and pulling at my arm. They also put some dye into my veins to see where the narrowing wa and this sent a burning sensation all down my arm into my fingers which was odd but only lasted a minute or two! 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 did this one more time and the procedure was done! The tube was taken out and the Doc placed pressure on the wound for 10mins! I was then taken to the recovery room where I stayed for about an hour and a half (dozing off every so often) I was discharged about 12 o clock and was home in time for dinner which was great!

My arm is aching a bit now (especially after typing all this) and I won't be surprised if I have a bruise in the morning when I wake up where the balloon enlarged my vein! But I can't complain, It didn't seem to be as bad as the last time I had it done. Hopefully it has been successful and will mean the aneurysm won't get any bigger. The Doc says I may need some more work doing on it in the future, but to leave it for now and come back for a scan in a month's time, so we'll just have to wait and see! Will keep you posted!

So had a really busy week this week, on Saturday I went to my friend's daughter's 2nd birthday party, the bouncy castle kept the kids occupied and the alcohol did the trick for the adults (obviously not me due to the fluid restriction.) Luckily the weather held off and fun was had by everyone, I left early though as I was really tired and everyone else went on to town for the night! Here's me and Sarah in the garden, with the bouncy castle in the background! (none of those bottles are mine, they are all Sarah's!!!)



It was back to work for me on Monday after half term, I had actually missed being in the classroom and missed talking with the kids! I don't really see it as work, which is a good thing. Yesterday I went in to work for the morning, and spent the afternoon with Peter and his mum and dad. He is growing up so quick and even managed to say Holly's car, when he greeted me at the door!
Last night I had a fab night out with the girlies for Carrie's 21st! We started off at Uni in her uni room then headed into town for some cocktails (coke for me) and a dance! Here's a picture of us all (before anyone was too tipsy to pose!



And of course there are always some dodgy photos, especially once the alcohol has taken hold, below is Nic trying to give me a drunken kiss (note the lovely expression on my face)!


And of course a girl can't go out without some lipgloss on!


So I've got my op tomorrow, I'm a little bit nervous but I've had the procedure done before so know what to expect! Will update you when I get home, hopefully I won't have to stay in overnight!

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!

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...

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...

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.

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)

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.)

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

So I was meant to be in uni today but I got up at 7 and threw up so I gave it a miss! I' ve just got back from dialysis, it went well apart from when I got off I went to weigh myself and my fistula started bleeding! To say I panicked would be an understatement, I felt sick and went dizzy, after a little sit down I was fine!


So other news, a friend of mine called keiran recently created a short video clip for a competition being run by clipstar.com, he is interested in becoming a model/tv presenter!



I said I would give him a quick plug on here, so click here if you want to watch it, and even better vote for him, he is currently in first place and stands to win $10,000 in this round and could potentially win $1million if people keep voting! Thanks guys!

Have a great weekend, I'll probably just be spending it doing boring uni work!

Easter...

Hello everyone, sorry for the lack of updates hope you had a Happy Easter!

My Auntie came over from Northern Ireland for a week (she goes home tomorrow) so this has been nice, by the next time she comes over there will be a new addition to the family (my little niece or nephew), talking of which my sis-in-law is showing!!! This is really exciting, only 6 more days till we find out the sex of the baby!!!

So back to Easter, I had a lovely Easter Sunday, I spent the afternoon with my uni friends which was lovely, I’d not seen them in a couple of weeks because we’ve not been in uni. So we all went round to our friend Hanne’s she had started hiding the eggs for the Easter hunt, which was meant to be for her daughter Ellie but we were all just as excited! There were little arrows pointing to where the eggs were and we even had a little egg and spoon race then spent the rest of the afternoon chatting! Then I came home and had a lovely Sunday roast with the family Turkey and all the trimmings finished off with half an Easter Egg!!!

No other news really my arm is still sore and the bruise seems to be getting bigger and darker each day also the uni article is coming along well, not quite finished yet though! Got three more assignments due in on the next 3 Wednesdays so I better get my bum in gear and get some work done!

Right speaking of uni work I’d best get some done…

So not much to blog about really, had dialysis last night and a nurse that hadn't been in for a while needled my fistula, she didn't know which way the blood flowed in my arm and didn't ask me before she started! Eventually when she realised she wasn't getting any blood in the syringe she asked me which way the needle usually goes in (I don't usually look so she is lucky I knew the answer) turns out she was going in the completely wrong direction, the result being a very sore arm today! Ah well at least she'll know next time!

Me and my mum went to get our hair cut and coloured today, I’ve gone for a change and had a red/brown colour put on mum went for her usual wacky purple streaks!

I had an exciting invite yesterday; my bro and his wife Fiona have asked if me and my mum want to come along to a 3D scan they’re going to have of the baby! This will be on the 10^th May and by that time Fiona will be 25 weeks gone, and will have had her 20week scan so we’ll know what sex the baby is!

The whole family are really excited and my bro even bought a bottle sterilizer the other day on his own!!!