Christmas is fast approaching and I don't feel at all Christmassy this year. I have managed to fit in my Christmas shopping in between going to the dialysis unit. It really eats into your time having to go 3 times a week into the hospital.
I had a very interesting conversation with someone yesterday; he felt that there was a lot of emphasis on transplanted patients and those who are on the list when there is in fact a lot of patients who have no chance of a transplant and will be on dialysis for ever.
I have to agree with him and we must make sure that dialysis is as painless and as easy as possible. We need to improve the dialysis units comfort and surroundings and the transport to and from the units could be vastly improved for many patients.
This is something that definitely needs to be brought up in the patients rally in January, I hope that as many people as possible are able to attend.
Merry Christmas to you all.

I have been completely rubbish at keeping up with this blog recently. All I can say is sorry. Life just seems to be escaping me at the moment no sooner have I been to the unit and had my dialysis that I am going back there for the next session. I seemed to do much more with my time when I dialysed at home. That is probably because when I do it at home I don't settle down on the machine until at the earliest 6pm and so I have much more of the day to get things done.
I am just so fed up with driving at the moment, I have clocked up an amazing 1115 miles since Nick left and that is only in 6 weeks. My poor car is going to conk out with exhaustion let alone how I am feeling. I just feel tired all the time and I am finding it increasingly difficult to motivate myself to do even the simplest of tasks. I am just so grateful to my Mum for helping me with the hoovering and with my laundry. That sounds pathetic I know, a 38 year old woman having her mother doing her laundry but I feel as if I am fighting a loosing battle and all I want is to have massive re-enforcements come from the flank and win the war! Anyone have a magic wand handy?
Anyway Merry Christmas.

I am feeling a bit low this past few days, I am recovering from a bought of tonsillitis. It felt as if I had swallowed 2 golf balls and I am sure some one stole my voice and replaced it with someone else's because although it has come back it is still very croaky.
To be completely honest I am very upset because of this infection I had to miss my first WKPA meeting and a weekend at my friends in Norfolk. Isn't it always the same; when ever you are really looking forward to things something usual comes along to spoil it. I know it is because I am so tired and run down with all the traveling I am doing back and forth to the hospital and my parents house. I am feeling so exhausted and I don't ever seem to catch up with myself.When I am tired like tonight I can't sleep and end up feeling even worse the next day. Oh well there's no point moaning about it; moaning about it won't change anything so I'd better just sign off and try and get some sleep. Goodnight or should I say good morning?

It has been an awful day today not only am I feeling incredibly low in my self because my fistula appears to be swollen and is incredibly sore. They have sent some blood tests away to make sure there is no infection there. I can only hope that everything comes back clear as that vein is literally and figuratively my life line. Without that would have to have a Hickman line inserted into my shoulder (which make you susceptible to infections). Then s telephone call came through to the office in Museum Place (the Kidney Wales Foundation Offices) to say that some brainless moron had vandalized the Donor Stone. I felt physically sick to think that some idiot had taken it upon them selves to desecrate the memory and love from all those people and families that the stone is dedicated too. I can not print what I think of people who do things like that. It is senseless. It was even more insulting because they couldn't even be bothered to be imaginative or literate! How would they like people to go into their homes and damage their belongings or to ruin something they had worked hard to achieve was so callously damaged. I can only hope that the graffiti can be removed and that people can eradicate it from their memories and only see the good the Stone has achieved.
There was a programme on tonight about a man from Porthcawl going to the Philippines to buy a kidney. He commented that he doesn't think people can make a moral judgement if they haven't been in his situation. Well I am in the situation and I can make a moral judgement and if he values the lives of other human beings that little that he is willing to risk not only their life but his own and he can look at himself in the mirror afterwards then so be it. Having said that I still do not think it is right what he is doing. As I have said many times, this is only my opinion and people are welcome to answer me and discuss this.

I hope that I will be excused for my erratic postings recently, I am still finding it hard to get into some sort of routine that I can love with for the next 4 months. I have driven over 500 miles in the last 2 weeks! I seem to be permanently on the road either driving to the hospital or my Parent's house. People are under the illusion that I can not possibly be on my own after dialysis. OK I don't feel like running a marathon or for a bus, if I'm honest however I don't need nursing either. All I want to do after I come off the machine is go to bed and sleep. I drive myself to and from the hospital which amazes some people but I am damned if I am waiting around for an ambulance car to pick me up 3 hours before I have to be there and then wait when I come off the machine for a taxi to take me home again. If I used the hospital provided transport I have calculated it would add a possible 3 hours onto my time. I have better things to do with my time than to wait around in Suite 19 of UHW. Which if anyone is interested could do with a serious face lift.
I believe all places of treatment should be as comfortable as possible, however this is not the case in reality. There is always a lack of space in hospitals but to have a waiting room for patients that has wheelchairs taking up the majority of the room and chairs that are hard on the rear I think is wrong. I know it would take money to put it right and that money just isn't there. I get the feeling that renal services are the poor relation of the health service along with geriatric services. Oh I'm ranting again. Sorry. Enough from me for now.

I am having a really bad day today, I was alright when I woke up in my Mum's house this morning it's just that it seems to have gone down hill from there. I feel sick and I've got a sore throat and head ache. I think I've got the on set of a cold because it can't be flu cause I've already had the jab. On top of all this anything and everything is starting me crying today. My God I'm pathetic and I am really getting cross with myself but unfortunately it doesn't stop these feelings. I just wish I could eat something and enjoy it. I am completely fed up with my dietary restrictions at the moment. I seem to go through phases where I won't mind it for months and then bang it gets boring and bland and all you want is to be able to go into a restaurant and order whatever you fancy without having to scrutinise it for banned foodstuffs. Roll on Transplant Number 3 it can't come soon enough. 3 years I've been waiting and I know other people have waited longer but I feel I am missing out on what should be the best years of my life and so is Nick because his life is restricted as well.
Oh I am being a moaner today I'm sorry, I'm not normally so down in the dumps but I'm just having a bad day. I'd better go and lock myself away so I don't depress anyone else.Bye

This will be my third attempt to put this post on today, my computer is being a pain in the neck!
Well another week gone - hooray! I don't often wish time away but every day that passes is another day closer to Nick coming home. That also means no more hospital dialysis (double hooray!). Don't get me wrong, it is not that they are bad or that I don't like the nurses and staff at UHW because they are great and they have been so caring it's unbelievable. It is just that I hate having to stick to a set routine of every Mon, Wed, and Fri @ 4pm I have to go to the hospital. I have a busy life apart from dialysis and having to drop everything and rearrange things is a pain. But I shouldn't grumble. As I said the staff at UHW dialysis unit have been fantastic and they all know Nick and have been asking after him and asking if I'm OK. They are a wonderful group of people who do a difficult job in not very easy circumstances because I am sure they are beset by the problems that seem to be faced by everyone in a "caring profession" these days. That is one thing I don't miss about teaching - the paper work, oh the endless paper work.
I am going to try and post this now 0 if you are reading it I have been successful, if you are not reading this my computer will be in the back garden via an open window!

Well another week nearly over and done with and what a week. I was lucky enough to go to the House of Lords for Kidney Wales' 40th Anniversary Reception. I have to say an excellent time was had by those of us lucky enough to go along. It was an extremely tiring day but well worth the travelling. My only disappointment was that Nick couldn't be with me. Nothing seems to be as much fun when he's not here (in the words of my 11 yr old nephew I'm sad - only he and I have a different definition of the word sad!).
Dialysis is proving to be as much of a chore as I expected. I seem to spend more time on the road driving in between my house, the unit and my Mum and Dad's house than I do in any one place. I now have more clothes in my boot than I do in my wardrobe. I am seriously thinking about getting myself a camper van and just living in that.

Many apologies for being away from my blog for so long. Time seems to have got away from me this past week. It doesn't seem to be so long when you say it like that but it has trully been one of the longest weeks I have ever had to endure. Getting used to being on my own is proving harder to do this time around. I am used to Nick going away for a few days at a time but I had forgotten what it was like to be on my own for weeks at a stretch. I am slowly getting into a set routine which will make my life easier by filling my time and not giving me time to brood over missing him. The hardest time is just as you wake up and you for a split second wonder where he is then you remember he is away. Going back to the hospital has been harder than I expected, through no fault of anyone. I have been so used to pleasing myself with times to suit my life having to go back to someone else's routine and having to rearrange and cancel my own arrangements because of it is horrible. There is only so much moving around that the hospital can do to fit in with personal arrangements after all they do have so many other people to think about. I have been lucky that they have arranged my dialysis to enable me to go to the House of Lords on Wednesday. My Mother is coming with me, my little way of saying thank you for all they have done for me - believe me it is small recompense for everything my family have done for me and continue to do (especially with Nick being away).
I have been letter writing once again but not to a politician this time I am afraid I have been writing letter after letter to Nick in a vain attempt to make his life a little less boring whilst he is away. I'd better get back to my barracking of the politicians next week as I am yet to receive a reply from either my AM or my MP. I hope others are fairing better than I.

5 days and counting! That is the way things are going in the Wager household at the moment. Everything is geared around Nick going away. You can't get away from it even though we try not to talk about it too much. I know it's inevitable but it doesn't make it any better. I knew what I was getting into when I married him - then I knew he would be away some of the time. Knowing something and accepting something are one thing you don't have to like it (that isn't written into the bargain!). So when people say to me "But he's in the Forces you must have known he would have to go away!" YES I KNOW. Having said that the people who usually spout these gems of wisdom have normally never spent more than 24 hours away from their partners let alone a birthday, anniversary or major holiday i.e. Christmas. It is only at these times do you fully realise how much you depend upon your partner for company and companionship. Well I do.
Add into the equation the impending trips to the dialysis unit 3 times a week and all in all life is pretty pants right now!!!!!

Wow! I have just spent an absolutely fantastic weekend at a superb hotel in the Cotswolds. Nick and I have been to this hotel before it is called Tortworth Court and I highly recommend it. Beautiful surroundings, fantastic food and friendly efficient staff. What more could you ask for in a weekend getaway? I'll answer my own question - NOTHING!
The real joy of a weekend like this for me comes from the fact that all traces of hospitals and dialysis disappear. OK so I still have to watch my food and drink but hey when you are in a beautiful country house with a spa and the man you love there has to be worse things in life. In fact I would say I am feeling fully recharged and ready to take on the world yet again.
Nick commented that a weekend like the one we have just enjoyed is something we should try to do twice a year. I'm in full agreement and am already planning our next weekend for when Nick comes home from the South Atlantic. I'm not someone who has ever really wanted to travel. I love this country I live in and believe there is so much to see and learn right here on our doorstep in good old GB. I love travelling in this country seeing all the regional differences and eating increasingly good food where ever you go.
Oh well back home and the washing and ironing will have to be done - but it can wait a little longer ....... Bye.

Finally, after my computer nearly ended up n the middle of my back garden via a window! Why Oh why does a lump of plastic and electric cables make you feel so useless? Sadly that is a question I will never be able to answer. As much as I try to fathom the workings of my home computer I am not getting very far.
In a way it is a good thing that my last post was lost in the ether of cyberspace. I was really down in the dumps on Tuesday and I don't know why. I am trying my hardest to not spoil my last week before he goes away but it is proving harder than I thought to block out the fact that he is going away and I have to relinquish my freedom for 4 months.
I will have to hand over my care to the nurses and technicians in UHW. I have been so used to being in control of my own treatment that not having any control will be difficult to say the least. Being shoe horned into a care pattern that doesn't suit me will be purgatory. At least it is only for a few months and there will be light at the end of the tunnel.

My parents came to Sunday Lunch with us yesterday and, as is inevitable at any family gathering with us at the moment, the conversation came around to Nick's immanent departure to the Southern Hemisphere! Nick wants my Mother to be with me when he leaves. He has arranged for a mate to pick him up and take him to the airport because he doesn't want me driving if I'm upset. I know he is only thinking of me but I'm not sure if I want my Mother around or if I just want to sit and sulk for a few weeks! Who am I kidding I'll probably have a good weep on Mum's shoulder then she will very quickly tell me to buck up and get on with life. And as per she will be right - Mum's usually are.
Thinking about Nick going (13 days and counting) is probably why I am awake before the birds this morning - in fact it is still pitch black and any sensible bird won't be awake for another hour.
Nick is also wide awake so we are going to dialyse early to leave the rest of the day free. This is what I will miss when I have to go back into the hospital. There is very little flexibility with changing your slot because if you need to dialyse early for any reason that means you have to find someone willing to swap for that session. Which all credit to the nursing staff if they can do it for you they will. However there are only so many times you can do this without taking the mickey - so you tend to plan your life round your hospital times/days rather than the other way around! So much for the Renal NSF "A time and place of the patients choosing" Yep and the Unicorn is saddled and ready to ride in the Pixie Parade. Oooooh I'm getting cynical. Oh well t.t.f.n. I am going to dialyse for the next 4 hours and you never know I might just catch up on my sleep. We can always hope!!!

Since the ceremony on Friday to lay the Donor Stone in Alexandra Gardens I have been trying to find the right words to express how I felt. Following what was an extremely moving ceremony I was asked to do press interviews which I did the reasons why I will explain later. It wasn't until I was sat in the car park of the flying club where I had just dropped Nick off that I broke down and cried. If I am honest I didn't just cry I sobbed and it was only then I realised why. I haven't grieved for the loss if my transplant; I just got on with life back on dialysis. It was there sat in that car park that I realised how guilty I felt that I had failed to keep that precious gift a stranger had given to me safe. No mater how hard I tried - I took my tablets on time, went to all my check ups, I ate properly and kept fit and active. Non of this stopped my kidney disease from coming back. What I have to remember is that I did have 71/2 wonderful years before it failed.
Kidney disease is no respecter of people it will attack the young, old and all ages in between. You only need to attend an outpatients clinic in Suite 18 UHW The Heath to see the diversity of people who suffer with some form of Renal Disease. All ages and every element of the social scale. A hotchpotch of humanity. In the words of our campaign they are "People Like Us". Please don't ever forget that people like me aren't just patients. I am a wife, a daughter, a sister, an aunt, a cousin, a niece and a friend but most of all I'm a human being that deserves a decent standard of treatment.

Back to the reason I agreed to be interviewed by the press. I felt very awkward being photographed by the Donor Stone as I felt a bit of an impostor. The ceremony on Friday was for the families whose loved ones had donated organs to save the lives of others. The only reason I did it was I believe it is vitally important to get the issue of organ donation and kidney disease into the newspapers and to public attention as often as possible.

I am still feeling emotionally raw after Friday and I expect I am not the only one. I would like to once again say thank you with all my heart to all the families that say yes to organ donation.

I feel I had a very productive day today. I spent most of today writing letters for the People Like Us Campaign. I really believe that if we want things to change for renal patients in Wales we can't just sit and do nothing. I read a very interesting comment today on a website I accessed

1 person is helpful, 10 people are influential, 100 people are powerful, 1,000,000 are invincible.

How true this is. I want the People Like Us Campaign to become invincible. Please help write your letter of support for the Campaign today and get your friends, family, neighbours and colleagues to write too. Examples of letters are available if you email me melwager24@msn.com or mel@kidneywales.com

You can also indicate your support for the People Like Us Campaign by logging on and completing the online form.
http://www.kidneywales.com/index.php?interface=formParser&formID=262

Thank you to Nick for running the Cardiff Half Marathon to raise money for Kidney Wales. Anyone who would like to increase his sponsor money follow the just giving link.

A big thank you to everyone who ran to raise funds for Kidney Wales - I spied a few familiar running vests.

Hello once again. Many apologies for being away for so long but I am back on form and raring to go.
On Saturday I attended the WKPA (Welsh Kidney Patient Association) AGM. It was a new experience for me as I have never been before. I was so pleased to meet so many different people from all parts of Wales; including West and North Wales. It was heartening to have such a positive response to the request for letters to be signed and sent to the Health Minister. We collected 50 letters on the day and had a request for many more to be sent.
Allison John had the opportunity to introduce the campaign to the meeting and the response after the meeting was over was positive and encouraging. We just have to keep up the momentum until the end of the Plus campaign in January and then the WKPA can hopefully take over the torch and carry it further. If all the patient groups across Wales work together I really believe we can make a difference. We have a Welsh Assembly Health Minister who is genuinely interested in Renal Issues but we need to continue campaigning to keep our interests in the forefront of the political agenda; this means writing to your AM and MP. I am going to sound like a broken record soon but I think it is so important that I am willing to repeat myself!
I was lucky enough to be elected onto the WKPA commitee; I hope I can do a good job and serve patients well.

Once again sleep is a rare commodity. I get periods of extreme insomnia when I may go for days with only a few hours sleep and then I'll hit a brick wall and collapse and sleep for 10-12 hours solidly. One of the worst things about the sleepless periods is that although I can't sleep (for lots of different reasons - pain being one of them) I don't have any more energy than normal so I can't do lots and lots. I use the time to catch up with my reading or knitting if I can concentrate enough; I am knitting a pair of socks at the moment so I need to be aware of what I'm doing. If I don't count stitches and rows I could end up with one sock for a giant and the other a toddler!
I wrote a letter to my AM today asking why a new transplant unit hadn't been built in Cardiff even though it has been under discussion for the last 3 years. The wheels of bureaucracy move ever slower! Apparently as I understand it there is some dispute over who should fund the day to day running costs of the new unit as and when it is eventually built. If anyone out there knows any more details I would be really pleased to hear from you. I will also be writing to my MP and MEP's over the next week and I urge everyone interested in supporting the People Like Us campaign to do the same. There are copies of letters available to give you a general outline if you want one - drop me a line on mel@kidneywales.com and I'll send them to you.
Please write with your support it is vital to show the politicians that represent us that the PLUS campaign has the backing of the people.

I thought this might make people smile, this is my rabbit Raina (a German Lop), she found out she could jump up on the patio chairs and now does so frequently sitting there for about 30 mins at a time before getting bored and going off to dig yet another hole in Nick's lawn. If she carries on with the Great Escape routine her days could be numbered! She already made 2 attempts at freedom but only got as far as nextdoor and then came back!! As you can tell from this she isn't the brightest of bunnys.

I can't sleep! It is infuriating. I have talked to other renal patients and a significant amount of them said they had disturbed sleep patterns. Mind you I have been an insomniac for years -probably as many as I have been a renal patient but remembering that far back is difficult :) lol.
The not being able to sleep doesn't necessarily bother me as I can always find something to do, read or watch on telly - believe you me with the number of Open University programmes I have watched over the years I should have earned degrees in subjects ranging from Art History to Quantum Physics (although I have a sneaking suspicion I would have failed that one!). It is often amazing what you can learn from late night/early morning telly.
Most commonly these days I knit; at the moment I am attempting my first ever pair of socks much to the amusement of Nick who asked why I didn't buy a pair for £1 in Primark. MEN! They just don't appreciate the feeling of satisfaction that I will achieve on completing my socks (probably by 2010!!!) and every time I wear them I will be able to wear them with pride. If there is anyone out there with similar projects or just loves knitting feel free to join in as next to the time spent on the dialysis machine knitting takes up the majority of my free time.

It was a dialysis day yesterday and I felt really washed out afterwards and went to bed by 8.30pm. Unusually I slept 12 hours straight. This is highly unusual for me as I am one of life's insomniacs.
With Nick going away for such a long time I have been lucky enough to have friends who are willing to learn how to put my needles in and work the dialysis machine. Hopefully I will not have to go into the hospital for my dialysis and stay as a home haemo patient until Nick comes back and takes over again. Yesterday our first volunteer came and put in one of the needles for her first time (she is a nurse so has had lots of experience). It went really well and she was brilliant so I have complete confidence in her.
I don't feel very well today. It is difficult to describe how I feel on a day like this; I just don't feel well. No energy and the thought of eating ... It is days like this that I have to force myself to eat something so I don't loose too much weight. Oh well I'm sure I'll feel better tomorrow.

It should be dialysis tonight but Nick is away with work and so I have had to take two days between sessions (just like the weekend for hospital based patients). It might be something I have to get used to as Nick is going away for 4 months in November.
I am not looking forward to him going away; he will be away for Christmas, New Year and my birthday. This would be bad enough but I won't only be losing my husband for 4 months I am also losing my carer. It is a scary thought that I will have to manage without him. People like Nick provide hours of unpaid care every day.
I am lucky enough to live close to my family and when I need extra help they are always there to support and assist. I know that I am extremely fortunate to have such supportive family and friends around me and my life would be poorer without them.

Dialysis day comes round yet again. Some weeks seem to pass quicker than others and this week has flown by. The passage of time has weighed heavily on my mind this week. My eldest nephew was 17 on Friday and it shocked me to think how much has changed in my life during these intervening years.
I was already living with renal failure when Michael was born but I had not yet started undergoing dialysis. I don't think I appreciated then how much my life would change when I began dialysis; or that a transplant is not a cure - just another form of treatment. Some people I have talked to believe that a transplant is like a magic wand that will solve all my problems. Life with a working transplant is wonderful! Your life doesn't revolve around a machine and you can go away from home without having to plan for weeks ahead. After my first failed transplant; I was in hospital for 6 months, lost count of the number of biopsies and underwent 6 operations attempting to save the kidney. So I knew that there were no guarantees with a transplant and so when my second kidney worked so well I was grateful for each day it gave me.
Now I am back on dialysis waiting for my third transplant and attempting to live as normal a life as possible. So in the last 17 years there have been some major changes in my life, great highs and drastic lows.
I wonder what the next 17 years has in store?

It's a dialysis night tonight so I thought I'd try to type my diary with just one hand! It isn't all that easy and might take me much longer to post my blog.

Yesterday's launch meeting was fantastic. I was pleasantly surprised at the number of AM's and civil servants that attended the launch. There was cross party representation which is the most important thing. I believe it is vital that the PLUS campaign is political in it's aims and objectives but it should never become a party political issue - many people may disagree with me and I welcome any comments and discussion on this subject.

Once again I was impressed with Edwina Hart's positive reaction to the issues that were put before her. When asked a direct question she gives a direct and honest answer. You are left with the impression of her being a formidable woman and it is a pleasure to meet a lady who is so passionate and dedicated to her role within the Welsh Assembly.

I would like to take this opportunity to express my gratitude to all those people who have backed the PLUS campaign in their official capacity and to remind anyone who has not yet signed up to DO IT. Particularly patients - even those who aren't feeling well at the moment (you may not be able to do the walk for life or the 10K race) but everyone can pick up a pen and get lobbying.

Today is the big day, the official launch of the PLUS campaign. I am hoping that the press will pick up on the story in earnest for this evening's Welsh News. I saw a short interview with Alison on this morning's news and hope the coverage goes on all day. To succeed this campaign needs public support and to get that people need to first know what it's all about.
People need to realise that it is People Like Us that this disease affects; I could just as easily have been their daughter, sister, wife or mother. It doesn't just attack the very young or the elderly, I was 17 when I first started having problems. People of all ages and from all walks of life can have their lives turned upside down by the diagnosis that the have End Stage Renal Failure. Disease is no respecter of wealth or status. Please support this campaign to raise awareness of the needs of renal patients in Wales this isn't just about money (although it is always good to raise funds!) this is about word of mouth and people power. Getting the issues talked about and raising the profile of patients who need your support.

Hi there,
Not such a good couple of days, I felt really tired and everything was such a effort. Someone once asked me to describe what it felt like when I had a bad day. When I had my transplant a bad day would have meant sleeping late, getting stuck in traffic or burning my dinner. When you are a dialysis patient having a bad day can take on a whole new meaning; from feeling listless to being nauseous and not feeling like eating anything. Then at other times feeling exhausted and not even being able to make yourself a cup of tea.
To cap it all last night during dialysis a large blood clot formed in one of the machine's tubes and I had to come of the machine an hour early so I didn't get a good dialysis session which means I'll have to have a really good session Tuesday evening to hopefully get me back to my correct weight and feeling better.
I don't like myself at times like this because I think I look and sound miserable and moaning. Oh well as she said in the movie - after all tomorrow is another day.

Last night was a dialysis night and luckily the machine only alarmed a few times which meant I could catch up on some sleep. I still didn't want to wake up this morning though. I don't know about other patients but I have a real mixture of reactions to dialysis. Some times I could fight the world and other times I couldn't fight my way out of a paper bag. Unfortunately today is one of the latter! Oh well world domination will just have to wait until tomorrow.

Hi my name is Melanie and this is my first ever blog. Until this afternoon I would never have imagined becoming a blogger - to be honest I thought the only people who wrote blogs were teenagers and I am certainly not a teenager!

I am really looking forward to getting more involved with the People Like Us campaign and I hope that more patients take this oportunity to set up their own PLUS diary's.

PEOPLE LIKE US CAMPAIGN

This is the first posting on Melanie's blog from Kidney Wales

PEOPLE LIKE US CAMPAIGN