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...

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.

Ok, so first things first... No baby news!!!! She is going for a routine hospital appointment tomorrow (she will be a week overdue then) so hopefully we'll know more then, maybe they will keep her in and induce her, who knows.

Seem to have had a busy few weeks really, can't pin point on things I have actually done. Met up with some friends and did some crafting (in anticipation of baby pictures.)

I also caught up with a friend I used to dialyse with Steph (who received her transplant a year ago) and one I still dialyse with, we went for a burger at Frankie and Bennys it was lovely!


On the dialysis front, nothing new really, had a few off days last week, vomitting and sickness but I'm lucky really, my really bad days are getting less and less as I get more and more used to dialysis I suppose. I have been good recently at taking my new tablets (Alucaps) and had my blood tests last night so hopefully it will show in them. I'm also counting down to my procedure on my arm (which is hurting today, for some reason!), the stent will be insterted under Local Anesthetic next Thursday and hopefully I'll be out within a few hours!

Thats it really, hopefully I'll be officially an Auntie soon and I will be able to announce the baby's name, which as yet no-one knows apart from Andy and Fiona!

I've decided that I have started talking more about family and friends rather than dialysis, so I'm going to take some pictures of the unit and talk you through my dialysis routine in my next post.... watch this space....

Hi, sorry I've been lazy in updating, thats because not much has happened in the world of Holly this week!

Me and the folks took Fiona out for lunch a couple of times to keep her occupied while we wait for the little bubs to make an appearance, think she is getting fed up waiting now, then again I think we all are. We also went out with her family for a meal together before the little one is born, this was a great laugh and I got to wear my new dress, YAY! I also them my final baby present which was a bib with "If you think I'm cute you should see my Auntie Holly!" written on it!

I've also been busy this week making scrapbooks to put pics of the baby in, they are coming along well and will be a great way of preserving memories for years to come!

I also ordered myself a new dell laptop in pink (obviously) so thats due to arrive on the 28th, well in time for my final year of uni!

On the dialysis front, nothing new really, I felt sick a couple of times during dialysis but I think this was due to me having a large lunch before my session, this seems to be a problem because I have to weigh myself before dialysis to calculate how much fluid I need to loose, this is done by taking my weight and then calculating the difference between that and my dry weight. So if I go in today and my weight is 68.9kg I would need to loose 2.4l (2400ml) as my dry weight is 67 and then an extra 500mls for the washback through the machine at then end of dialsys. However if I have had a big lunch the scales can't calculate what is food and what is fluid and so I may take off more fluid than necessary and obviously feel ill, may get cramps and have trouble getting my blood pressure at the end of the session.

However my latest bloods weren't too bad, my potassium had come down to 4point something, it needs to be under 5 as to much can cause heart problems. My clearence has gone up from 71% to 73% which is good news, as if it was decreasing I may need to put up the time I spend on dialysis! ( I'm one of 2 people in the unit that only do 3 hours)
The only problem with my blood is my phosphates (again) I like these Alucap tablets a lot more than other tabs and I have no probs in taking them, I just cant seem to remember to take them "every" time I eat!!! Also my calcium is still a tad high due to those other tablets I was on so hopefully by the next bloods this will have reduced.

So today I am off out for lunch with my folks, Fiona and Mum's friend who is over from Ireland (not decided if I'm going to eat yet, as I don't want to feel sick again on the machine later on.) I may still go along though as I don't want to miss out on any gossip!

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

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

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

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

Ireland Part 2 – The Wedding

The big day had arrived and we got up early as we had to go to the hairdresser’s to get our hair done. Mum and my Auntie had theirs washed and blow dried, while I had mine washed, then went under the dryer, had it put in rollers then under the dryer again and then put up! It was well worth it as it looked pretty (even if I do say so myself.) We then went home and got into our outfits and set off for the church which was a 15minute drive away. We arrived to find loads of onlookers outside the church trying to get a glimpse of the bride and the wedding, the minister said this was the biggest wedding he had ever been involved in (there were around 200 people there).

The wedding lasted over an hour as the string quartet played, hymns were sung and the groom’s sister (who sang at my brother’s wedding) also did a solo. After the wedding the guests were invited over to the church hall for a light lunch, where the quartet also played again. All the guests then set off for the reception which was taking place at a hotel in a place called Newcastle which is a small seaside town at the foot of the Mourne Mountains. It was over an hour away (I slept for most of the car journey).

The reception was at the Slieve Donard Hotel and started at around 5 o’ clock. The speeches were great and the food was delicious, the tables were decorated beautifully and the attention to detail was superb! Instead of favours the bride and groom made a donation to a local charity called Riding for the Disabled which was a great idea. After the four course meal there was a chocolate fountain with strawberries, fudge, marshmallows etc and then a band and disco. There was a buffet served at around 11.00pm and the dancing went on till around 1 o’ clock, that’s when we left but apparently the chatting went on till 3am.

We stayed over in the hotel and woke up to an Ulster fry breakfast. I just had sausages and bacon and it was delicious (although I was to pay for it later.) After breakfast we went for a stroll in the hotel grounds and along the beach, there was even time for a paddle in the sea (it was absolutely freezing!) We then headed on home back to Armagh as I was too tired to spend the day in Newcastle which was a shame. The road home was not straight (that’s an understatement) it was so windy and twisty and about 30mins into the journey I could tell my stomach wasn’t feeling too happy. We pulled over to get a drink of water and I thought the sooner I get back in the car the sooner we get home but this was not one of my better ideas. About 20minutes later we had to pull over again, this time in a car park, I walked into the corner and was (as discreetly as possible) sick in some bushes, not so glamorous, I was trying so hard to not be sick on my own feet as I was wearing flip flops!!! I thought the sausages and bacon in the morning wasn’t such a good idea, ah well, I will learn my lesson one day!

So the rest of the day was spent taking it easy and sleeping as I had tired myself out! Then it was off to dialysis again which went fine and luckily no clotting this time. Yesterday we went to a local town called Portadown for a bit of souvenir buying and window shopping, and that’s my week in a nutshell really! We arrived back home last night about 11.30 and I had a lovely nights sleep back in my own bed!

I’m so glad I decided to go, I don’t know why I put it off for so long or why I was so nervous about it! The dialysis went fine, the nurses were great and I haven’t got a bad word to say about it at all, it almost felt like I didn’t dialyse at all, it was a real holiday and I will certainly go back in the future in fact… I can’t wait!!!

Ireland Part 1

Well where do I start? I’m back from N. Ireland after an amazing week away! We managed to fit so much into one week! It didn’t get off to a great start as our plane was cancelled and we had to get on the next one which meant a two hour delay, I managed to find some computers and logged onto the internet to kill time, so all was not lost. Our flight eventually left Liverpool at 10.45pm instead of 8.30pm and we arrived at my Auntie’s house in Armagh well after 12.00 and went straight to bed.

The following morning we took a walk round Cabragh which is where my Mum was brought up and where I remember spending lots of time as a child. We walked through the fields that my Auntie owns and made friends with some cows! We then went for a Sunday lunch at a posh restaurant, Mum, Dad and Auntie D had a four course meal, I just had the main. After lunch we visited the church at Loughgall village where the wedding was going to take place on the Thursday but more about that later. That night we were invited round to my Mum’s cousin’s house to see their son’s wedding presents. This is a tradition in Ireland apparently, people are invited to see what everyone else has bought (Mum loved this bit, she’s very nosey). So we had tea and cake and chatted till about 11.30 that night.

On the Monday we did some shopping (my favourite pastime) in a local shopping centre and had lunch there. We went home for a little rest before setting off again for Daisy Hill Hospital for dialysis. It took half an hour to get there we set off at around 5.45 and my shift started at 6.30pm, the nurses were so friendly and really professional, I was on every night before 6.45.

On the Tuesday we went to the local town (Armagh) for a little look at the local shops and in the afternoon we went to Lisburn (about a 45minute drive) to see my mum’s Auntie, who is in her 90’s. It was great to see her and she is looking really well. We spent a couple of hours with her and then headed back to my Auntie’s house where I treated my mum, dad and Auntie to a Chinese takeaway, which was delicious.

I decided on the Wednesday to take it pretty easy as the following day was going to be a hectic one with the wedding. So we had a little walk round the Mall (a green area surrounded by trees in the middle of the town where the local cricket team plays) We used to always do this when I came to Ireland as a child so it was nice to be able to do it again. In the evening I obviously headed off to Daisy hill in Newry again for dialysis which went ok although I did experience some clotting about an hour before the end, but thankfully it held out to the end of the session and I didn’t need to come off early.

It's been a busy week, can hardly remember what I've done!

On Monday I did a practice 2 mile walk to make sure I could actually do it, this is a big deal for me as I get tired really easily and I didn't want to ask people for sponsor money if I was unable to actually complete it! I did it in about an hour so thats not bad for me. So I'm all set now for tomorrow, I hope the weather stays nice! Thanks to everyone whose sponsored me (on and offline) I really appreciate it!

On Tuesday I had a fun day catching up with different friends, I went to a play barn with my friend Hanne and her daughter Ellie. This was great exercise running around after her and really tired me out, so I had a nap in the afternoon, ready for a night out with some other friends. Me and my friends Steph (whose had a kidney transplant) and Gary (who I dialyse with) went for a chinese and it was great to chat away from the hosp!

On Thursday I spent the whole afternoon at Warrington Hospital in the Opthalmology department! On a routine eye check about a month ago my optician said that my optic nerve was swollen and he was going to refer me. I was a bit concerned as this happened before about 2 years ago and I needed various tests and an MRI scan so I was worried that all this needed to be done again. We had to wait about 2 or more hours to be seen, I had to have special eye drops in that dilated my pupils (I looked like I was on drugs) and made my vision all blurry! I needn't have worried though, the consultant saw me and looked at the back of my eye and said it was scarring from the previous time it had swollen so it would probably always be like this! So all is good.

Finally yesterday there was a bit of a nightmare with dialysis, Warrington Hosp phoned and said that the unit had no water and so patients were going all different places to be dialysed, I was told I would have to go to Clatterbridge for 4.30. So we set off just before 4.00, but on the way there the unit manager rang and said a patient had got there before me and so he would get on first and I would have to wait until 6.30! To say I wasn't impressed was an understament, particulary because he was told to get there for 6.30!!! So we arrived at the unit after about 45 minutes and knew that we would be waiting well over an hour, which isn't the best feeling when you then have to have dialysis for 3 hours and then have to tavel all the way home again. So to kill a bit of time me, my mum and dad went for a walk to a nearby strawberry farm that we spotted on the way in! We managed to pick 2 massive ponnets of strawberries in 15minutes and I'm sure my mum ate as many as she picked! Everytime I turned round her cheeks were puffed out as she had stuffed another one in!

All the patients from my usual shift in Warrington also went to Clatterbridge so it wasn't so bad, I finally got on the machine at 6.30, there were no tellies so the time dragged and the patients actually talked to each other for once, as in Warrington the beds are set out at an angle that patients cant see or talk to eachother! So this made a change and killed a bit of time, but I'll not take the tellies at Warrington for granted now!

So I got home about 11, and watched Big Bro in bed!!!

Will let you know how I get on with the walk tomorrow! x

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.)

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

Brave Holly's plea for organ donors

Published 05/05/08 7:00 am

by James Parr

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

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

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

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

Uni article...

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

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

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

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

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

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

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

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

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

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

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

Not much news really... Dialysis is the same old same old, but I'm feeling good so I suppose I can't complain.

I had a great night out on Saturday, It was my Best Friends 21st Birthday! I went with her, her family and her fella to an Indian restaurant in Manchester called East Z East!
Indian food isn't really my cup of tea so I just had some Egg Pilau rice, a poppadom and some naan bread!



The bloke that owns the restaurant actually appeared on the last series of Ramseys Kitchen Nightmares (you might remember the odd looking naan bread stands that Gordon told him to get rid of). So Ramsey obviously helped him as he now has 3 restaurants altogether and seems to be doing well and still has the naan bread stands!!!

Other news... I've passed another uni assignment, so chuffed about that!

So I went to see the consultant...

All in all it went well. I still sometimes have trouble with my blood pressure at the end of dialysis so he increased my dry weight again, which (as usual) I wasn't impressed with, but he is so lovely I couldn't argue with him! The only thing that was dodgy about my blood results was my phosphate level (unsurprisingly) as I have an aversion to taking my phosphate binders a.) because I hate taking tablets, I'm such a big kid. b.) they are Huuuuuge. and c.) I have to use lots of my fluid restriction up taking them. So I told the Doctor all this and he has put me on two different phosphate binders one called Calcichew which I take with breakfast and tea. I have taken this before and as the name suggests you chew it rather than swallowing it (which is good for me, requires less fluid) he also put me on another binder which I can't think of the name at the mo, but it is chewable too and I take that at lunch time.

Finally as I wasn't impressed with him putting my dry weight up he suggested I should go walking for an hour a day!!!!! Think I'll start with half an hour and build up and might get my bike out when the weather starts getting nicer! The consultant also prescribed me with a tablet to control or suppress my appetite so I can hopefully loose a bit of weight... fingers crossed these work and I won't be running to the loo all the time (they contain lots of fibre which expands in the stomach, making you feel full)

So that was yesterday, and today I've been out to Stockton Heath to a jewelers to see about getting a ring for my 21st birthday which my mum and dad have very kindly offered to get me! I found one I liked it's white gold and has 3 diamonds, but the gentleman behind the counter suggested I come back when he has another particular ring in stock to see if I liked that better. All in all a successful trip, so I'm going back next week to see which of the rings I like best.

So thats it really... I am still off uni for the Easter break and so have not seen much of my mates (I miss you guys)...Only one more Uni assignment left to go... and the countdown is on till my 21st... 25days to go...

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!

It's a....

Well.... we don't know the sex of the baby yet! It was a bit of an anti-climax, the baby was being awkward and wasn't in a position to be able to tell if it was a boy or girl! The radiographer said she thought it "might" be a girl but she wasn't 100% sure so we have to wait till 11th April to find out!

Nothing else significant to tell you, Uni work coming along nicely and dialysis has been going ok!

Have an appointment with my consultant next week, so will see how I am doing! Will let you know what he says!

Newspaper article...

I have been asked to do an article for my university newspaper, I’m very excited about this as hopefully it will raise more awareness of kidney failure and organ donation.

I am struggling to fit the past 3 years of my life into 700 words and portray what life is like for me on dialysis. I want to put across how uncertain the future is whilst waiting on the transplant list the fact that the call could come at anytime, tomorrow, next week, next month or even in 5 years time!

If the article makes even one person sign the organ donor register then it will be worth it as 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!

To sign the organ donor register click here or ring 0845 60 60 400.

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!!!