Yet another busy week this week!

Hospital on Monday, which was the usual long wait but the time passed as I met up with a couple of friends that I used to dialyse with!

I then spent Tuesday doing some uni work, fun fun fun! Wednesday I got up early and went to the hospital again, this was for blood tests as the level of Tacrolimus (anti-rejection drugs) was too high in my blood. I was only in the hospital for 10 minutes which was great! I received a phonecall later that afternoon to say that my Tac had to be reduced and so did my steroids (which is good, as I might start looking less like a chipmonk soon). That night I caught up with some more friends that I used to dialyse with, one who has been lucky enough to receive a transplant and one who is still waiting. We went to Fuxion in Elsmere Port for an all you can eat chinese buffet, which was delicious!

Thursday I submitted another piece of Uni work and spent the morning with Abigail and the afternoon was spent baking and decorating cakes for the Live Life Then Give Life Cake sale!
My mum and I sold the cakes in the staffroom at my old school, it was fab to see all my old teachers and they were surprised to see how well I looked! Even more fantastic was that everyone was so generous and we raised over £115 pounds!!! Here are some pictures from the day....

You can see more by clicking here.

In other news...
My surgeon has agreed to be filmed for my Battlefront campaign, along with Jessica Wales who is currently waiting for a double lung transplant, I am really grateful to them both. I am also trying to encourage some of the nurses on the ward to be interviewed and filmed too, I will continue to work on them!!!

Battlefront have also introduced a new feature on my page, it allows you to become members of my campaign, it would be great if you could visit the page and click join! My members currently stand at 303 and I would love it to be much higher if possible!

So plans for this week are; visiting the hospital for clinic tomorrow, it is also my dads birthday so we will probably go out for tea somewhere nice! I am at Uni on Tuesday and Thursday as well as being busy doing some Battlefront filming and research! All this will have to be fitted around some Uni work and work on my dissertation!!!! I am also treating myself and my folks to a night at the theatre to see Joseph at the Liverpool Empire! Soooo much to do so little time, I am really appreciating all the little things (and the big things) that I can now do post transplant, I don't know how I had time to fit dialysis in before! I am hopefully going to London next week to do some filming with my mentor Oli and Shaa (who I mentioned in a previous post) as well as the filming with Jess in Kent, which I am really looking forward to as we have never met. None of this would have been possible before... I am so pleased I can now use my new found freedom to help others who are in a similar situation to what I was in less than 4 months ago, by raising awareness of the importance of Organ donation through my Battlefront campaign....

So sorry I've been quiet...

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

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

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

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

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

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

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...

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.....

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...

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 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!

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…

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.

Everyday Life

Not much news really just been busy with boring old uni work, which seems to be paying off as I found out on Thursday that I passed another assignment with a mark of 73 which is a 1:1! So I’m chuffed about that!

So on the 21^st April I’m starting a Work-Based Learning placement which I’m really excited about as well as a little nervous as I don’t know how my energy levels will cope. Uni has been very helpful and have sorted it out for me to do my placement over 10 weeks part time instead of 5 weeks full time. So I’m going to be working with 6 and 7 year olds in a primary school 2.5 days a week. I have my first meeting with the teacher tomorrow, so I’ll see what I’m letting myself in for.

So dialysis hasn’t been too bad, had a dodgy time a couple of days last week with my BP so my dry weight has been put up yet again, which (as usual) I’m not happy about. I also got my blood results back and they caught me as I’ve not been as good as I should be, I’m rubbish at remembering to take my renagels (phosphate binders) I hate taking tablets (I have a fear I might choke, which is practically impossible) These ones are quite big and I have to take them anytime I eat anything!!! Apart from that everything’s ok.

I am shattered tonight as today me and my folks looked after our friend’s little boy who is 20months, so I have spent the day playing trains, singing wind the bobbin up and twinkle twinkle little star and even managed a trip to the park to feed the ducks and play on the swing! Had a fun packed day running around after him, and now an early night for me I think…

Great news... and a night on the town!

So the cats out of the bag now… and I can tell you I’m going to be an AUNTIE!! YAY!!! I’m so over excited, my sister-in-law is due on the 21^st August and both her and my bro will make great parents! Me and my mum couldn’t resist and have been buying baby outfits already! So that’s the news out of the way now back to everyday life…

Sorry for the lack of blogging been busy again with uni work, 3 more assignments handed in, only 4 more to go!!!

I’ve had a cold this week so had to miss uni a few days! I’m on the mend now and even managed a night out with the uni girls last night for one of their 21^st birthdays. You would think we had grown out of fancy dress by now but oh no…. school girls, cats, cowboys, fairies and even Marilyn Monroe were all out last night!

I had a great night, although as usual I did have to leave early as I was shattered and due to the fluid restriction couldn’t drink much (it’s not much fun being the only sober person). My patience doesn’t last long when the drunks get into the swing of things… literally, I got hit on the head twice last night by my mate Nic (see pic)!!!

So dialysis has been going ok, same old thing really… blood tests next week, to check the levels of potassium, phosphate, calcium and about a hundred more things, basically seeing whether I’m sticking to the renal diet or not and whether I’m taking my tablets!!!

So plans for next week are…. Going to uni, doing uni assignments and not forgetting dialysis, I lead an exciting life!

Live Life Then Give Life

So, I’ve told you all about dialysis, transplants etc let me know if there’s anything else you want to know about my condition I’d be only too happy to tell you….

Nothing much to update you on really. I’ve been really busy with uni work and assignments as I like to cram as much as I can in when I’m feeling well incase I can’t do any work the next day if I’m not up to it! This is probably not the best way of doing it but it’s the only way I can manage it.

Had a bit of a rough dialysis last night as my blood pressure dropped really low 75/45 at one point, I felt sick and had awful cramp in my leg which is maximised as I am stuck on the dialysis bed with not much room to move, whereas normally you’d jump and stamp around I cant do that because of the tubes attaching me to the machine.

So as a result my dry weight has been changed to 66.5kg now so hopefully that will help and I won’t feel as bad as that again anytime soon. So I’m feeling a bit delicate today, a bit dizzy so I’m not going into uni, I’ll attempt to do some work from home later.

Before I go I want to tell you a little bit about a charity that is close to my heart (or should I say kidneys lol)

Live Life Then Give Life was originally set up as a campaign by Emma Harris and Emily Thackray to raise awareness of organ donation and the chronic lack of organ donors in the UK. It aims to encourage people to think and talk about the subject of organ donation and to try and get them to take the proactive step of signing the organ donor register. That was back in March 2006 and they ran it by themselves until about 6 months ago when they decided that LLTGL should become a charity so that it could do much more to save lives.

LLTGL helps give those affected by transplant a voice within the media, educates the public with literature, talks and events, and supports those in need of a vital transplant, which due to the terrible shortage of donors in the UK may never come.

Well I had some exciting news… my good friend at the charity Live Life Then Give Life, Emma has asked me to be the North West advocate for the charity, this is a great honour and a privilege! Emma and Emily are an inspiration to me, Emma suffers from CF and Emily received a double lung transplant a year ago after also being born with CF, I am pleased to say she is doing fantastically well and both Emma and Emily are a great support to me. So thank you, you two! x

Click here to find out more about the LLTGL charity.

A bit of background health information…

I became ill around Christmas 2004 and went to the doctors who said it was probably a virus and to drink lots of fluids, I progressively got worse and went to see a locum doctor (as it was Christmas time) he did my blood pressure and a quick examination and immediately referred me to Warrington hospital. Whilst at the hospital I was prodded and poked, asked if I had taken ecstasy and if I was pregnant… they didn’t seem to know what was wrong.

Eventually they did a scan on my kidneys and said they were shrunken and that I would have to go to ICU in case I needed emergency dialysis overnight. Immediately they told me that I would need to be on dialysis 3 times a week for the foreseeable future whilst I waited on the transplant waiting list for a suitable kidney. I was transferred to the Renal Unit at the Royal Liverpool University Hospital so they could prepare me for dialysis and start my treatment. I had a femeral line inserted to start dialysis immediately but as this line was not permanent and I could not leave the hospital with it still in place I then had a neck line put in (a plastic tube inserted into my chest). Next I had an operation to create a fistula (a vein joined to an artery in my elbow) this is permanent and allows for needles to be inserted for dialysis, however this did not work in my left arm and I had the same operation on my right arm a few days later which was successful. I remained in hospital for 3 weeks, the doctors told me to forget about my exams and college and not to expect to go back anytime soon. However I was determined to get my life back to some sort of normality and a month after getting out of hospital I returned to my psychology A Level, eventually getting a grade B.

During that year I was put on the transplant list but also my mum was tested to be a live kidney donor (my dad wasn’t suitable as he has asthma and high blood pressure) After 6 months of tests it was found my mum had a virus called CMV (a virus that 50% of the population have) this doesn’t affect people usually but can be dangerous in people who receive transplants. This was the case for me as I am CMV negative; the doctors told me and my parents all the risks surrounding the situation, such as 1/400 die from the side effects as it can cause pneumonia and breathing problems (bearing in mind I had already told the doctors I wanted a CMV negative kidney of the list) The doctors, transplant co-ordinator and my mum left it up to me to make the decision as to whether to still go ahead or not. In the end I talked with the doctors and the nurses at my unit and decided that I wouldn’t go ahead and wait my turn on the list…

So after dropping my A Levels in music, Religious Studies and I.T when I first found out I was ill, I decided to repeat my last year of college to complete the I.T A level… reaching a grade C. During this time I also took my driving test and passed first time (much to my brother's disappointment as it took him two attempts, haha!) Chester University accepted my grades for the Early Childhood Studies degree… and here I am, in my 2^nd year; I’ve been on the list 2 ½ years now and on dialysis 3 years. Sometimes day-to-day life is a struggle, juggling my university studies, dialysis; tablets; diet; fluid restrictions and of course not forgetting fun things like my social life and of course shopping.

I hope I haven’t bored you too much, next time, more about what happens during dialysis….(Fun, fun, fun!!!)

Introductions...

Well this is my first ever post so I better start with some introductions....

My name's Holly Shaw and I'm 20 years old... I am currently in my 2nd year at Chester University (Warrington campus) doing an Early Childhood Studies degree! I have made loads of ace friends who are very understanding and I love them to bits! I have Kidney failure and so have to have Dialysis 3 times a week. I am on the transplant list and so I'm waiting for the call that will mean I am able to lead a normal life.

Hopefully this blog will raise awareness of kidney failure and organ donation but be warned I will end up waffling on about friends, family and shopping.

I live with my Mum and Dad and I have a brother Andy who is happily married to Fiona and they live nearby. My family are a great support and I am truly grateful, I love them lots, without them I wouldn't have got through the last 3 years.

I hope this gives you an insight into dialysis and life on the transplant waiting list!

Enjoy.....