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

I got the date for my procedure on my arm... wait for it... 4th September!!! Aggggeeees away so no need to get nervous yet! At least I know now when it is though, I hate not knowing, which is ironic as I don't know when or if I'll receive a transplant, it's just a waiting game! I'm an impatient person and my sister-in-laws pregnancy seems to have gone on forever!

Only 20 days to go till I'm an Auntie! I'm getting really excited now and can't wait to meet the little one! I even felt her kick the other day which was amazing, although it did freak me out a little bit, especially when I actually saw Fiona's tummy move!

Yesterday afternoon I decided to treat my Mum and Dad and take them to the cinema to see Mama Mia! It was fantastic, I loved it, I could have watched it again straight away (sad I know) it's not everyone's cup of tea but hey it was certainly mine and my Mum's (and even my dad's although he won't admit it out loud!)

Had a busy day today babysitting Peter (my mum's friends son) who is 2 now, we spent the day running round and playing with "choo choo" trains! Fiona then came round and we all went out for a pub lunch to our local, which had a bouncy castle for the kids to go on (although I may have made my way on there, only to encourage Peter obviously!) We came home to play some more and as Fiona was leaving Mum decided to tell Peter there was a baby inside Fiona's tummy to which he looked a little confused but started stroking it and saying "baby"! He then lifted her t-shirt up to see if he could see it but looked more confused when he couldn't. Next he moved on to dad and tapped his stomach and said "baby" to which all three of us were in stitches! Kids say the funniest things as they say!

As Peter left we said that he would soon have a little baby friend to play with, no doubt he is impatient, but lets face it he isn't the only one!

Just a quick blog to let you know that all went well at the appointment with my consultant. My calcium is a bit high, due to me taking calcichews and alphacalcidol so he has stopped both of these, the calcichew permanently and the alphacalcidol temporarily. So my phosphate binders have been changed (yet again) this time to Alucaps, I have taken these before a few years ago so I should be ok with them.

I asked him about my arm but he seems to think it looks ok (I still think its getting bigger) I told him that the ultrasound people hadn't been in touch about another scan so he gave me the number direct to ring them when I got back from Ireland. By coincidence, they rang later that day to book me in, so I'm having it on the 21st July, fingers crossed all is well and I won't have to have another angioplasty.

So thats about it really, I spoke to him about my aranesp and he suggested I could inject it myself on the saturday to save me taking it with me, I think the look on my face told him what my reply was! Theres no way I could do that, and my Mum n Dad couldn't either, so I'll take it with me and have it through the machine on Monday.

So I'm running around like a headless chicken, getting everything ready for goin, cramming everything in my case (although it still won't close) getting my meds sorted, and I also have to take my dialysers with me too, which is the artificial kidney that clips on the machine and filters the blood. So thats something else to remember!

Anyway best go and carry on, so much to do, so little time (you can tell I'm not used to going on Holiday.)

Going to try and get to an internet cafe during the week, will update if I can, if not, See you in a week! x

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.

Well I did it, or I should say we did it!




We met up with everyone at the little Roodee Car park at 11.30 and got given a free kidney research bag with some water, crisps, biscuits and apple juice aswell as flags and balloons to carry with us on the walk.

We set off at 12.00 along the river, walking through some gardens and across the bridges! It took us around 45 minutes to do the well over 2 mile course. I didn't even sit down for a rest at any point, I was impressed (even if I do say so myself!) At the end of the walk there was a stand raising awareness of Kidney Research and events coming up as well as a stand to encourage people to sign up to the Organ Donor Register. Everyone that took part also got a certificate for their achievement.

So its completed and thanks to everyone who donated money to Kidney Research, it is much appreciated. I have raised £130 so far and it will make a difference, improving the understanding of renal disease, its causes, treatment and management as well as improving patient care. You can see some pictures of the walk here. I'll leave you with a picture of me and mum on the bridge.

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

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)

That squirrel died with a nut in its hand...

Sorry for the lack of blogging, I've had a mad busy few weeks....

First I started my work placement at a local Primary School and I'm loving every minute of it, even if the kids do ask me questions I don't know how to answer in a suitable way!? I'm with year 2's so they have a wealth of information but are still so innocent at the same time, which is just right for their age. I'm doing this for the next 10 weeks and I'm working Monday all day, Wednesday all day and half a day Friday which is great as I feel ok when I wake up in the morning as I have not had dialysis the night before. So all is going well with work, its tiring but great fun and I am impressed with myself that after the 4th day I knew all the kids names in the class (29 of them)!!!

So the topics for this week have been story writing (about a magic leaf) and woodland animals, one of the activities for the kids was them looking at stuffed animals and writing down the features of them! There was a red squirrel, a badger, a fox, a mole, a cuckoo and an owl, I had to pretend these were great, whereas in reality they were pretty freaky! The teacher had to sensitively explain the concept of stuffing an animal, and that they are real animals that were once alive, some children found it hard to grasp this and proceeded to ask me questions like why are they so still? and how did this one die? but the best comment of the day was a kid who said "wow, that squirrel died with a nut in its hand, cool!" It brought a smile to my face but then I had to explain that it probably didn't die with a nut in its hand that the person that stuffed it put it there and glued it in place! Next I was told I looked like the badger because I was wearing a black and white stripy top, So I survived looking at the stuffed animals, and I'm looking forward to going back tomorrow morning and seeing what my next challenge will be!

In other news... to my surprise I appeared in my local paper today (The Warrington Guardian) I had completely forgotten that Emily (from LLTGL) had sent a press release out about me becoming the regional advocate for her charity. The paper hadn't been in touch and so I really wasn't expecting it and obviously it came as a nice surprise and will raise awareness for a great charity, the article isn't online so I will type it up for you to have a look at...



Holly Helps Organ Charity

A life spent hooked up to a dialysis machine is what faces 21-year-old Holly Shaw, but instead of dwelling on it she has thrown her efforts into working for an organ donation charity. Now her hard work has been rewarded and she has been made Live Life Then Give Life's key advocate for the North West.
"I am really proud to be an advocate for Live Life Then Give Life," said Holly, from Westbrook. "The gift of life is so important and a transplant could give me back my life; dialysis is a life saver but also a life sentence. With a new kidney I wouldn't have to do the treatment but most of all I would just feel normal and well again," She said.
Holly has been waiting for a kidney for three years. Her dialysis treatment leaves her feeling tired and nauseous and she can only drink 500ml of fluid a day. More than 8,000 people in the UK need an organ transplant. To sign on to the NHS organ Donor Register go to http://www.uktransplant.org.uk/ or call 0845 60 60 400. Go to http://www.livelifethengivelife.co.uk/ to find out more about Holly's campaign.



So thats all the news really... dialysis has been ok, diet is going well and I'm feeling quite well at the moment, I'm looking forward to a night out on Sunday with my friends and family for my 21st Birthday (which is on Tuesday) should be lots of fun, and I'll post about all the antics sometime next week!

I chose my ring today, which my mum and dad are very kindly buying me for my 21st Birthday!!!

It's gorgeous and very unique, it is 3 white gold bands with 6 diamonds on it!!!

I can't wait till I get it... I'll post a picture up when I do! :o)

Only 18 days to go....

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

It's a....

Girl!

I'm going to be an Auntie to a baby girl... I'm soooo excited.... only 131 days to wait!

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!!!

Jimmy Carr

So this week has been a bit of a nightmare my mum and dad have had a tummy bug and have been really ill, they caught it off the little boy I was talking about in my last post. Thankfully I have managed to avoid it and have tried to keep as far away from them as possible (in the nicest way obviously).

My dad usually takes me to dialysis and mum picks me up, dad was too ill on Friday so mum took me (this was a bad idea) she hadn’t eaten for two days so was pale and wobbly, she dropped me off and I sent her on her way hoping she made it home without being sick (she looked awful). So I didn’t want her to come and pick me up and make herself worse so thankfully my big bro came to the rescue and picked me up! So I’m hoping they’re both over the worst of it and are on the mend.

So last night mum, dad, bro, his wife Fiona and I were all due to go on a night out to see Jimmy Carr on his latest tour (repeat offender). Mum and Dad were too ill and so I invited one of my friends and Fiona invited her sister. We had a great night, Jimmy was very funny but extremely rude, and he even managed to take the mick out of someone waiting for a kidney transplant! We queued up at the end of the show to meet him and get DVD’s and programmes signed. I let him know that I wasn’t impressed about the joke and told him I was waiting for a kidney transplant, he was a bit taken aback but his words were “Well you look pretty f***ing well though don’t you?” to which I replied thanks, he was lovely, so I forgave him and he wished me luck with my wait.

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…

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.....