The dialysis journey continues....

Since my first visit to the low-clearance/pre-dialysis clinic back in September not much has occurred.  We've written off to the ESA monkeys but obviously haven't heard anything yet so financially things are still up sh*t creek.  We haven't heard from the community nurses, or the builder or anyone else really.  I've been cracking on with the diet thing and trying to get myself organised.

During the past week I've had 2 more visits to MRI.

Monday we went off to Suite D of outpatients to yet another department, that of  the Vascular variety. After having a couple of MRSA swabs taken I saw the doctor, who's name I can't remember.  After ascertaining that I am right handed she positioned my left arm on a pillow on her knee and proceeded to scan the underside of my upper arm.  It was a bit like an ultrasound machine and very similar to the scans I have done regularly of my heart.  It was all going swimmingly and I was enjoying watching the scan on screen when she changed tack and decided to scan the lower half of my arm and for this she put a tournequette at the very top of my arm, and she fastened it very tight, and I mean VERY tight.  For the next 10-ish minutes, although it felt a lot longer, I sat there feeling like my arm was going to burst and I didn't dare look down at it as my squeem levels would have gone screaming off the radar!
Eventually she was done.  It transpires that I have great arteries (woohoo) but rubbish veins (boooo) and siting the fistula at my elbow isn't an option so it will be sited on the inner edge of my wrist.  Great.  But then she said me being sedated for the procedure woudn't be an option as sedation, she seemed to think, was as bad as a general for someone with my problems.  Fabulous.  So now I do have to be awake for it.  Instant panic.
I came away from the appointment feeling despondent, fed-up and waorrying yet again about the whole thing.  It was a bit of a teary evening but eventually I stopped feeling sorry for myself.

On Friday we were back at MRI in the pouring rain by 8.30 in the morning, managed to park on the street outside the hospital.  I was feeling a bit iffy today which the blood-taking nurse noticed when I went in for my arm-full of blood to be taken.  She seemed a bit concerned so put my file to the top and I was straight in to see the consultant.  The tablets to stop the leg tremors are giving me nightmares so stop taking them and she'll get the GP to put me on something else.  The phospate blockers are causing an upset stomach so stop taking those.  I told her my worries about the fistula procedure to Dr Hirst and she said I could see the clinical psycologist who would be able to teach me some 'coping stategies' (I bet he can't!) so I said 'Yes please!'

We talked about transplant again but she was unaware whether the transplant co-ordinator had written to or heard back from my cardiologist but once they had, then I would be referred to the transplant start-up clinic.  So many bloomin departments and clinics and specialists, its a bit mind-boggling!

Then in to see the dietician; a different one to last time.  This one confused me greatly bu saying as my kidneys were filtering potassium ok at the moment I could eat items in the red column, as long as I didn't have all of them all the time kinda-thing.  Then she said although 'corn based snacks' were in the green column (green for yayy) I must only ever have them as a treat, say once a month - confusing.  And it is important that I stick to the 1/2 pint of milk allowance a day, as protein is baaaad.  I mentioned I sometimes felt sick in the mornings so was advised to have a carbohydrate snack before going to bed - such as a couple of plain biscuits, 2 slices of toast, crumpets, croissants.

From there we went in and saw Krisha again, one of the pre-dialysis nurses, who was purely there incase we had any questions, which we didn't so then it was home.

I didn't feel as positive about it all this time when I got in, I felt quite confused.
Anyway, half an hour later the post arrived and there was my appointment for my fistula procedure.  Thursday 18th December.  One week before Christmas.  Shit.

Dialysis beckons....

I haven't been here to update for a while.

Nothing much has happened really since I last wrote.  I finished my Med Sec course at college and passed all my exams, which surprised no-one more than me.  I now have a diploma - I've never had a diploma before!!
I spent over a year applying for jobs, going for interviews and finally in early September I landed a job as a part-time Admin/Receptionist at a doctors surgery in Withington.
Hurrah, I hear you cry.
Sadly, things then got somewhat complicated and the job never happened.

I went for my usual Nephrology out-patients appointment and was told that my kidney function had now gone below the acceptable level of 20% and was currently languishing around 13%. O-Ohhhh.  Not good.  I was sure it would all be ok (that's what I do) as I didn't feel unwell, no more than usual anyway, a bit tired here and there but not poorly poorly.

Anyway, the following weeks did indeed see the symptom start to kick in big-styleee.
The worst one by far (at the moment) is the lethargy.  Lethargy is a bugger.  I thought lethargy was just tiredness but oh boy was I wrong.  Lethargy is horrible.  It can come from nowhere, suddenly you go from moving about making a brew to not moving for hours on end.  Its not just not moving, but its having absolutely no energy AT ALL, not even to lift your arm to reach for that cup of tea you just made, even thinking is hard work.  Not wanting to get up and move to the toilet because of the effort involved.  Extreme lethargy is horrible and sadly its been becoming very frequent now.
On the days when I dont wake up feeling lethargic I tend to think 'Yippeee' right what needs doing? and rush about like a crazy thing (think disabled tortoise rather than hare) but at least on those days I do have a little energy to do things.  I have already learned this isn't a good way to go either as it completely knackers me out for later in the day.  I have already learned to take things slowly, but putting things off 'til tomorrow, knowing that tomorrow might be a lethargic day and so it won't even get done then, is hard to do.

And then there are the leg tremors.  They have also set in, endless twitching of my right leg which is apparently also a symptom, and a very irritating one at that.
Headaches are another.  Luckily the sickness hasn't started yet.  And the lower back pains are a killer too, they really hurt.

A couple of weeks ago Hari & I attended a 4 1/2 (count them 4 & a half!) hour appointment at MRI where we saw the entire pre-dialysis team.  It was a very thorough appointment where we came away with our heads ready to explode with all the information we'd been given.  No-one could say they didn't cover everything...

First I went in for a blood test, which this time included a Hepatitis test and a HIV test, and she took 7 tubes of blood - SEVEN - and left me with a cracking bruise.
Then we saw a lovely dietician called Rebecca who went through what I eat on a general day and discussed what I should steer clear of.  Other than salt there is nothing banned, just things to eat regularly, semi-regularly and rarely.  Sadly in the rarely column are prawns (my favouritest food EVER), chocolate and crisps.
But, looking for the positives - spirits & white wine are good to go **happy face**
Out are diet/light fizzy drinks and in are full-fat fizzy drinks, out are crisps and in are corn based snacks (ie Monster Munch, etc), out are mushrooms but in are as many apples & pears as I want.
So a few weeks on I am able to find positives for all the negatives.  Its a healthier diet I have to keep telling myself that, but when you fancy a Fry's Turkish Delight but know you can have the turkish delight bit but not the chocolate bit, it gets a bit tiresome.

After Rebecca we saw Krisha, one of the lovely pre-dialysis nurses.  She explained everything about dialysis to us.  There are 2 types Haemo Hemodialysis & Peritoneal_dialysis .  I can't have the peritoneal as I have a urostomy and they don't go well together, so Haemo it is for me.  She thought it was time already to refer me for the fistula to be made on my arm for the dialysis machine to connect to.
This is where a vein & an artery are knitted together to create a sort of 'super vein'.  And oddly enough this is the thing that bothers me the most.  You see, my body is an utter mess from the waist down; wonky mangled legs with scars, bulging knees, minnie mouse feet, scars, urostomy, scars and oooh more scars.  However, from the waist up, trust me I am a flippin Goddess, (joke obviously :) )   But trust me, I look ok(ish) for 47, so call me vain but I don't want a sodding vein; super or not, in my arm.  And I am squeamish beyond anything; my squeam levels are set very low.  The thought of this buzzing thick vein (for I have heard they 'buzz') in my wrist makes me feel physically sick.  Everytime I start reading any literature about it to prepare myself, I feel ill and get a bit upset.  I'm such a girl sometimes.
I know I have to have one and no matter how much I sulk and stamp my feet is going to change that but just for the record, I don't want one!
We discussed home haemodialysis and by the time we left her she had a little list of people to refer me to and get to contact us - builder, social worker, community health team and we left with yet more leaflets.

Next was the consultant, Dr Gill Hirst, I was of course delighted to meet another Gill and especially one who knows that Gill is spelt with a G.
She wanted my entire medical history (this took some time).  She explained everything that would/might happen and there were a couple of moments I did audible gulps and felt a bit tearful at the prospect of it all.  She gave me more medication to combat leg tremors, the itchy skin I'd started getting (another symptom) and informed me I needed to have a course of hepatitis injections as I'd be using the dialysis equipment (apparently everyone who uses such equipment and indeed works in a hospital has Hepatitis injections).  She rang the transplant nurse and got him to come down too to have a chat.

Isaac, the transplant nurse, was the most thorough of anyone we'd seen.  He recapped everything, and I mean everything.  I kept trying to chivvy him along, bless 'im but he was having none of it.  Anyway he told us all about the whole transplant process.  He didn't seem to think, as I did, that I wouldn't be suitable but it mainly depended on my general health and what my Cardiologist thought (seeing as I have a bit of a dicky ticker), he again gave us a ton of literature on transplant; information for me as a recipient and some for anyone thinking of being a donor.  I don't think anyone would offer to be a donor for me, not that they wouldn't offer but it entails surgery & recovery so I think its a big deal and needs a lot of serious consideration and I certainly wouldn't want anyone to feel obligated to do so, and then if anyone did offer they'd have to be a match, so I'm pretty sure its a long shot and I'm trying not to pin my hopes on it.

So, since the hospital appointment, my daily tablet intake has gone up from 4 a day to 13 a day.  I've had to start a diary of food intake each day, how I feel each day and a list of my medication as some things need taking in the morning, some at night, some before food, some with food, some three times a week, some twice a day; its bloody mind boggling!

Other than receiving my next appointment for pre-dialysis clinic (I have to go every 4-6 weeks now) nothing has happened since (phewww).  I am off to the docs tomorrow as I am finding a bit of a disconnect between hospital letters and things being actioned by my GP so I find it easier to take my hospital letters to the GP in person and point out all the stuff that needs actioning!  A bit of a waste of a GP appointment but thats the only way it seems to work and I can keep on top of it all.

Its all very trepidadting (not a real word but one we came up with on girlie holidays), and I have had a few low, teary moments worrying about what might be to come, but I just keep trying to remember that there are people in a far worse position than me.  I've had 47 years of battling some bodily nonsense so I am looking at this as just the next 'adventure', something to get through, to experience and come through the other side (hopefully), whether that be by ways of a transplant (fingers crossed) or mastering home haemodialysis and fitting it into a fully functioning life where I can finally get back to life and to normal, whatever 'normal' is.  Maybe this is my new normal.

So for now, it's chin up and onwards and upwards.
Now pass me a Bacardi & coke, full fat of course and a Turkish Delight, minus the chocolate of course.... *sigh*

My Story #WOWDebate2014

I was born in 1967 in Blackpool, Lancashire.  The 3rd of 4 daughters.  My sisters are all able bodied, no-one is sure what happened with me!  I was born with Spina bifida and a heart murmur.  As a baby I had heart failure.  At the age of 4 it was discovered my bladder wasn't functioning and it was removed and a urostomy was fitted, it and me have endured a squeamish friendship ever since.

As a child I barely noticed I was disabled, nothing would stop me behaving like any other child and having 3 sisters, I fought and bullied and argued and played like everyone else.  I was quite good at running races back then and frequently won.  I went to the local Brownies and we were all active with our local church (more from a community aspect than a religious one), going to Sunday school and one year all 4 sisters appeared in the Rose Queen together.  I was never excluded from anything because of my disability.

I went to 'Highfurlong Special School for Handicapped & Delicate Children' as it was called back then.  I adored school.  I loved my friends, loved my teachers and loved learning.  We were pretty well cocooned at school, there was no bullying until you went in the playground, as we bordered a secondary school and the kids from there used to stand at the fence and mimic our walks, or do the typical 'spaz' stuff.  I was a pretty opinionated child and became a gobby teenager so they got as good as they gave from me anyway.

The education was basic, very basic and when I was a teenager I was chosen with 3 other pupils (us apparently being the cleverest) to go to the school next door to study 4 subjects which our school didn't do.  I did Biology, Chemistry, Physics & French.  I loved it, especially French and I came 2nd in the end of term exams.  When the year was over the other 3, all boys, left Highfurlong and transferred to that school.  It was considered that I needed a school nurse too much so I had to stay at Highfurlong, I was devastated.  I lost a lot of interest in school after that.
I took 7 CSE exams and passed all of them with varying grades.

From school I went straight into a Youth Training Scheme learning secretarial skills which involved a placement and my first job as an Office Junior. I used to cycle along Blackpool prom every day and down Red Bank Road and then carry by bike up 2 flights of stairs to the office, it amazes me now to think how fit I was then.  From there I became a Door Cashier at the then newly built Palace nightclub. Then I met a man who was later to become Husband #1 and at the age of 21, I moved to Kent to live with him. I first got a job as a Telex Operator for Global Travel then as a Secretary at Modern Medicine.

From there, Husband No #1 and I were accepted on a training course with Whitbread and trained to be pub Managers. We worked in 2 training houses, one a food pub in Kent and one a North London boozer (hell on earth), then the holiday relief circuit & eventually our own pub in Detling, Kent.  We were there for a good spell but soon became disillusioned with Whitbread and saw them as the profit before people firm they are so we left. I got a job in a video rental shop then as a Training Clerk at Sainsbury's while we searched for our freehouse.

Eventually we found the Three Horseshoes in Duton Hill, Essex and moved in in August 1993, just 6 months after we got married.  For the next 12 years we turned it from a run down dirty horrible pub known for late drinking to a friendly village local.  A lot of people who hadn't used the pub before came back and we started up a community association and took the village post office on for a year when it closed.  It became the heart of the community, most customers lived in the village and as we had no village hall, the pub became the focal point.

I was a lot fitter then which is a good job as I was on my feet most of the day.  I used to do half of the bar work every day, all the cooking, all the bookwork and some of the cleaning, organised events, sat on committees and socialised, it was here I made friendships which endure to this day.
In 1994 I contracted Septicaemia which led to Endocarditis and was quite poorly for a good few months and in 1997 my urostomy threw a wobbler and had to be re-sited which meant major surgery at the Middlesex Hospital in London.  That knocked me quite a bit too.

In 2001 after years of having my confidence undermined by my verbally bullying Husband, I decided enough was enough and left him, which also meant having to leave my lovely pub and home.  For  a couple of years we continued to run it together but lived separately, but eventually that became impossible and I left totally.  I got a job as a receptionist at a local newspaper and in 2003 I met a man in Manchester (via the internet) who eventually became Husband #2 and in 2004 I moved to Manchester.

By now health-wise everything was starting to fall apart and my right leg started to swell at the knee and become painful.  I also started having serious problems with urine infections and I was diagnosed with chronic kidney disease, stage 2 back then.  Over the years which followed my mobility reduced further and further, it was like the decline was stuck on fast forward and soon I was having to be pushed distances in a wheelchair.
Then, horror of horrors I started to have problems with continence which got so bad I had to stop working due to accidents occuring at work and the embarrassment was crippling.  As I'd always been a very positive, cheerful person, this really knocked my confidence and I started to not want to leave the house.  Investigations were done but basically no-one seemed to be able to tell me why it was happening and what I could do to stop it.  I looked to my diet and tried stopping various things and eventually after stopping drinking coffee things calmed down.  But by now I wasn't keen on daring to go out of the house, the fear that something *might* just happen was enough to scare me in to staying home, where I felt safe.
I had very dark days where I remembered how social I'd once been and how life had changed.  I always knew my health would slow me down one day but I really wasn't prepared for it so soon.  I was only 41 at this point.

Things continence wise improved slightly and I managed it ok, as did my lovely husband.  I suffered the humiliating ATOS medical and was appalled as everyone else is by the lack of interest, empathy and human decency shown in the questions, the questionner and the whole sordid process. I was awarded ESA and for a while the pressure of not being able to bring in a wage was eased although the feeling of being inadequate didn't go away and never has.
In 2011 I was barely mobile, not being able to get around my own home without a stick and holding on to things constantly and after a few quite bad falls it was discovered that my right leg was actually dislocated and couldn't be corrected without a knee replacement.  I spent 6 months with a cricket splint on and in immense pain.  During this time the government changed it ESA rules and I was told mine would end as I was in the Work Related Group, and now the rules were changing from an assessment every 2 years to only being allowed to receive the benefit for 1 year.  I appealed and asked to go in to the support group to as it was for people with long term illnesses/disabilities.  I went to court in January 2013 (with my dislocated knee) stating I fitted 3 of the 12 criteria but they disagreed and I lost my appeal.  The same year I knew 2 people who won their appeals who are fiddling the system, so that shows what a shambles the whole system is.
In 2013 I finally had my total knee replacement.  I knew it was done because of the dislocation and to relieve pain, it hasn't given me any better mobility but at least its not as painful any more.  My mobility is very poor now and I go nowhere without a stick or two and even at home, where before I always managed to hobble & wobble my way around, I now use a trolley to support me.

Financially things are getting worse.  We lost that benefit and I have the threat of DLA be reassessed in the future.  For the first time in the 46 years I've been on this planet I actually feel disabled, but not because of my disability, because of the way this country; it's politicians and its evil main stream media demonises anyone who is disabled and anyone would claims a benefit.

Remember folks Child Benefit is a BENEFIT, the clue is in the name, as is the old age pension.  Does that make everyone with children and anyone over retirement age a benefit scrounger too?
Also remember, tomorrow you too could need the welfare state.  Tomorrow you could start to feel unwell and be diagnosed with a life limiting, disabling illness or disease which means you are unable to work.  Not that you can't be arsed to work but that you are unable to work and what will you do then?  You should be able to rely on the system in place to protect you if that happens.  But that system is being eroded away by greedy, self serving politicians.
DO NOT believe the media when it quotes figures at you about how many people claim fraudulently, do your own research, find out for yourselves.
Any system which exists is bound to have people who will exploit it, I mean just look at the MP expenses scandal.  Just look the the banking fiasco.  Greedy fat-cats who cream off the excess for themselves and make the less fortunate scapegoats for their mistakes.

It angers me beyond belief that I have worked all my life.  I have never profited from being disabled, I've never used it to get out of doing anything I should have been doing.  And in these years when I find myself in the position of having to battle on a daily basis against my own body's reluctance to function properly or even in a way which just allows me to be the person I know I can be and so want to be, I find I also have to fight the system and the faceless, feeling-less people who run it.

2014 Wish List

This is my wish list for this year....


To pass my Medical Secretary course with a distinction, or at least a pass!

To find a way to do the Level 3 course...

To get a job that I love and where I am appreciated for what I can do rather than what I cannot do...

For that job to be in some way in a medical environment...

To pull a pint behind the bar of MY pub again... (not likely with the wanker of a landlord that there is)

To regulate all my health problem to such a state that I can function each day without worrying about going out/pain/discomfort/embarrassment on a daily basis.

To stop taking it personally that the system thinks I am a scrounger and to have self belief that I am just as valued and worthy as anyone with fully functioning working legs.

To sort out all money problems.

To finally get out of the benefits system and prove this shite government wrong.

To move to a 2 bedroomed flat

For that flat to be in Essex....

To tell my Mum how much I love her on a regular basis

To drink less...

To lose some weight...

To walk more and improve my circulation and therefore my overall health...

A have a shed load of passion....

To never pass up the opportunity for a kiss...

To finally write my book... (haahhaaa, this had been on my wish list for long than I've been alive!!!)

To take Carmen & Lew up on their wonderful offer of a visit to New York...

To make sure the girlies get to Ireland to trial Karen & Jon's new yurt venture...

To start looking at my bank statements again instead of being horrified to do so...

To not be scared of the postman and his brown letters from the housing benefit people...

To be a better friend, as my friends are so amazing to me, I feel a bit inferior to them

To have the self belief I did before I got poorly 5 years ago (this is the most important)

To repay my debts (I hate debts)

2013 Review of the Year

So... 2013 has been done and dusted. What did it bring?

I started the year as I ended the previous one, with a dislocated right knee and waiting for the sight of the letter from the hospital dropping through the letterbox telling me when I would get my shiny new one.

January.....
... started with a great deal of trepidation and nervousness over an impending court appearance to challenge this illustrious Government's (spit, spit) opinion that I was not disabled and therefore not entitled to ESA (Employment & Support Allowance).  As we all now know, according to them, the Spina Bifada I was born with its imaginary and all the other points I raised are in fact not true also.  I'm just one of the many who have been punished for being born disabled (along with the people who have found themselves disadvantaged also) as this Government sees fit.
January was a trying time indeed.... However, every cloud has a silver lining and there were 2 silver linings for me in January.
Firstly, my lovely cousin Phil (who I once thought to be the original bachelor about town but he proved me wrong by getting married to Heather the year before), well they had their first child, Austin Lewis Elmer (ALE for short....).  He was born in early January and I got to see him when they visited in February before moving to South Korea!  Booo hooo.....

Secondly, my bestest buddy Lemony Jones came on an 'adventure' (that's what she called it) by train to Manchester to stay for a few days in the snow, quite an intrepid explorer she is!  We had a lovely time, including a meal out at Damas Art of Meze and a slightly tipsy push home followed by the Mel having to physically lift my right leg up the front door step when I got stuck.

February...
...still no letter from the hospital. Another of my fabulous friends, Stella and her daughter Fran visited overnight in February.  I'd yet to give them their christmas presents from 2013 and they went down very well, especially with Fran who didn't stop playing with them!

In March I was visited by a third girlie.  This time Karen came to stay for a couple of days as she was up here on business.  I went off prospecting for the day with her round Lancashire & Cheshire and had a thoroughly lovely day during which we spent every single minute talking!!  We also used my trolley as it should be used storing the gin, tonic, bacardi, cigs and ashtray on, she found it a very handy item to have about home!

April, it finally happened.  I went into Manchester Royal Infirmary on 4th and by the end of that day I had a brand new knee.  I only spent 4 days in hospital too which was an added bonus and with a course of physio, injections at home and subsequent visits to Orthotics everything went swimmingly, not so for my kidneys though which are still recovering from the anaesthetic!
Hari also passed his driving theory test too.

In June Hari became a published musician!!  When we'd been in Preston and he'd played sitar with a group of Indian fellas they'd recorded a CD one day, we'd more or less forgotten about it but then one day in June a CD dropped through the letterbox.

We finally made a trip down to Essex too as I'd been missing it but with the dislocated knee and then the post-surgery recovery I had to keep putting off a long drive in the car.  By June I felt I was ready so off we went to Mel & Pete's for a few days.  Karen had broken the news she would be moving to Ireland also so after the shock we all felt a get-together was much needed as we didn't know how long it would be til we could all do it again.

I also had tickets for Wimbledon.  Karen & I went and had a fabulous day as we used to do.  We were lucky enough to see Del Potro play, as well as Laura Robson v Maria Kirilenko.  I didn't see Boris though, sadly.

In August, my lovely little car went 'BANG' one morning.  It was gone for 2 whole weeks which left me without the ability to get out of the house unless being pushed in the car, it was a horrible 2 weeks.  In the end it was fixed (with huge thanks to my Mother-in-Law!) and I had it back.  But the decision was finally made to sell it and get a motobility car.  We chose it in August and took delivery of it in September and its fab.  I sold my car to a lovely lady from Stoke who loved the colour!

In September also, Mum came to stay for a few days and we had a lovely time together and exciting of all, I went back to school!  I started a City & Guilds 1 year course in Medical Administration (AMSPAR).  It took an awful lot of nerve and confidence to pluck up courage to attend on that first day but I'm glad I did.  One exam down and 2 to go I am really happy I've stuck with it.

In October, 2 of the lovliest people I know finally got married.  Hari was best man at Si & Chelle's wedding and we had a splendid day!  Chelle looked beautiful, her bridesmaids looked beautiful, Si looked ok too!

In November we went off back down to Essex for a few days, it seemed odd that Karen wasn't there but her, Jon & Domino were now safely ensconced in Ireland.  We had a lovely couple of days, seeing the other girlies and I met up with Debbie, a girl I'd worked with in my very first job when I was 18.  I can't express how lovely it was to see her again and she hadn't changed at all!

I also went back and visited my old school, Highfurlong, in Blackpool as its being pulled down soon to be merged with another school.  It was good to reminisce but its time schools like that were pulled down, in my opinion, I wrote another entry on it so I won't waffle on now.

December bought rain (as usual), a few financial worries (so whats new!) and Christmas.  I did the first of my 3 exams on the course at the beginning of December, a nerve wracking experience indeed.  Hari & I had a quiet and peaceful christmas and a lovely new years eve together.

I know people say this every new year as the whole episode brings reflection.  But, 2014 will bring change for us, I know it will.  What effects those events to come will have remain to be seen but things they are a-changing folks.

I wish everyone light, love, peace and happiness for the coming year.  May all your dreams be happy ones.