One hell of a week

Monday of the last week, I felt pretty rough, very, very lethargic, a bit dizzy, sick & I had a banging headache.  I didn't go into work as I really couldn't motivate myself to even make a cuppa, let alone get dressed. As soon as Hari texted to let me know he'd phoned work, I fell straight asleep for the next 5 hours.  We did have to go to Wythenshawe hospital in the afternoon as I had my first appointment at the Anticoagulant Clinic and was put on Warfarin - great stuff, just what I need at the moment!!

Tuesday I went off MRI for dialysis (see previous entry in blog) and it was a success.

Wednesday I phoned work to update my boss & ask if I could take this week off as I'd already missed 2 days, had dialysis tomorrow & hospital appointments Friday.

Thursday - Hari & I went off to Altrincham.  The journey was crap, we kept getting lost.  When we found it, we missed the turning so had to turn round & I managed to find a side street choked with traffic & roadworks.  I was getting more & more anxious & more and more stressed.  We managed to turn round, pulled into the carpark & up to the barrier.  We obviously didn't have a pass as I'd never been here before so we pressed the call button for a good 5 minutes before someone answered it.  We parked ok & went up to the ward on the second floor.  I was shown to a bed, weighed and left to sit while a nurse, called Gill, set my machine up & went through the paperwork I bought with me from MRI.

I was feeling really emotional and tearful.  I hadn't wanted to be like this, I'd wanted it to be a positive beginning of my training journey but I felt shattered & really just wanted to sleep.  They took my obs & then got ready to do the needles.  It was decided that an injection of lignocaine would be a good choice, but that needle hurt, only a bit but it did and as I was hovering already on the edge of tearfulness, the tears just came.  I felt ridiculous and really, really fed up and this was even before the two dialysis needles went in.
The needles did go in, with a good deal of pain and the whole 3 hours of dialysis was uncomfortable with one of the needles.
I tried to relax once I was on the machine but it just wasn't happening.  I had a cuppa tea & some biccies when the trolley came round and I later a sandwich & another cuppa.  Half way through the treatment I got an excruitiating pain in my abdomen & all down my left leg.  It was incredibly painful & really uncomfortable.  I couldnt change position because I wasn't to move my arm, I kept trying to shift to ease it but it persisted and started to cause spasms in my leg.  I could only get comfortable with my left leg bent at the knee and slung sideways, which hurt my lower back but the pain eased.  The nurses didnt seem to know what it was or even offer a suggestions, they just gave me a couple of paracetamol.  Hari wasn't allowed in the room AT ALL which I thought was slightly over the top, so he was sat out in the corridor for 4 hours and I was sat inside the room for 4 hours, and I could really have done with my mind taking off everything by Hari.
At the end of the dialysis I couldnt wait to get out of there and didn't want to go back.  Hari drove me home, it was a pretty silent journey and the traffic was horrendous.
He went of to his Buddhist centre after making some soup, it was all very silent.  I really needed a cuddle and to cry on his shoulder but thats not his thing.  He went out and left me to cry alone.

The next day I woke up alone as Hari was at work.  It was probably a good thing as I was still incredibly down, there wasn't an ounce of positivity anywhere to be found.  I rang the pre-dialysis nurses as soon as I got up & had a very tearful conversation with Krisha in which I decided to ask to go back to MRI.  I knew in myself that I really wasn't up to learning to do my own dialysis yet.  Hell, I can barely look at my own arm when it has needles in it at the moment.  I'm not too keen on watching the blood go round the machine cos I know thats my blood.  I feel sick when I think about needles.  I needed the nurses to do it for now, I needed to feel safe in the safety of their expertise.  I needed to stop trying to run before I could walk.  I always manage to cope with everything, its what I do.  I've been coping with things since I was born, there has always been a new health problem, a new disaster.  20+ operations, endless urine infections, endless hospital appointments, so I should be able to manage dialysis like a piece of piss.  But I had to accept that I couldn't, not yet.  I needed time to settle in to the whole having dialysis 3 times a week, get in to a routine of it being a large part of my life now before I tried to teach myself.  I knew that now.

Krisha was great, very understanding & non-patronising.  She rang me back to say she'd rung the training centre & Gill was going to re refer me back to MRI & I was to continue going to Altrincham until then.  I was happy with that.  That calmed my nerves a little.  Krisha stressed that I could at a later date still train myself but maybe give it a few months to get into the swing of things.
That calmed me down and made me feel happier about the journey ahead.
That evening I had a long chat with a lady on facebook who lived in Chorlton called Cassie.  She'd been through the whole journey too and her kidney failure was for the same reason as mine, Reflux.  I'd not met anyone else who had the same reason before.
Cassie had been through the whole journey, kidney failure, peritoneal dialysis, haemo dialysis, home training, & transplant and was now healthy & working & in a good place.  She was a great help, much more than I thought she might be - you can read her blog here - The Girl on Dialysis

Friday, I had a bit of energy.  It was a short burst.  I managed to get my dressings off... my arm is still very badly bruised

I had 2 clinic appointments and a hospital appointment today and by the end of the day I was totally knackered but relishing almost 3 days of dialysis !

Pre-dialysis/Low Clearance Clinics

The pre-dialysis stage lasted 1 year for me, give or take a week or so.

I went along to my first appointment which lasted 4 hours - 4 whole hours.  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.
I 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 were prawns (my favouritest food EVER), chocolate and crisps.
But, looking for the positives - spirits & white wine were good to go **happy face**
Out were diet/light fizzy drinks and in were full-fat fizzy drinks, out were crisps and corn based snacks (ie Monster Munch, etc) were in, out were mushrooms but in were as many apples & pears as I wanted.  She convinced me to look for the positives; things I COULD eat rather than concentrating on the things I couldn't eat.

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'm not too shabby - still have me own teeth, haven't coloured my hair (& the grey doesn't show up too much in blonde), great boobs & a winning smile, I think I don't look too bad for 48, I really didn't want a sodding vein; super or not, messing up my ok looking arms.  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 made me feel physically sick.  Everytime I started reading any literature about it to prepare myself, I felt ill and get a bit upset.  I can be such a girl sometimes.
I knew I had to have one and no matter how much I sulked & stamped my feet was going to change that but just for the record, I didn't want it!
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 wouldn't be pinning my hopes on it.

So, after the hospital appointment, my daily tablet intake went up from 4 a day to 13 a day.  I started a diary of food intake each day & how I felt each day.  I did 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; it was bloody mind boggling!

All the medication quickly regulated the symptoms.  The leg tremors stopped after I substituted the tablets for tonic water as the tablets gave me nightmares, tonic water contains quinine and is an excellent leg tremor stopper!  I also had to stop the phosphate binders which caused major tummy problems.  And the bicarbonate of soda tablets were increased to 7 a day from 3 a day.  But the tiredness decreased a little, as did the lethargy and there is now no itchy skin.

It was all very trepidadting (not a real word but one we came up with on girlie holidays). I've had some 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 decided to look to 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*

How it began....

Hello.

I'm Gill.  I thought I would document my Dialysis Adventure for 3 reasons.

     1 - It helps me deal with it if I can write it all down & share it with people.  Even if no-one reads it.
     2 - I'm sure everyone on my facebook friends list is sick to death of seeing constant updates, so  sharing it here makes more sense.  And....
     3 - Hopefully if someone who is going through the same thing, they can get a non-medical, first -hand account of what the journey was like, although I am aware everyone's journey will be   different.

I'll give you a bit of background into why I'm now on dialysis.

I was born with a heart murmur & Spina Bifida in the Summer of 1967.
Luckily for me, the lump on my spine was at the base which meant that I only lost some of the nerve endings which go to the lower half of my body.
I had heart failure as a tiny baby and at the age of 4 it was discovered that my bladder wasn't functioning so it was removed and I was given a Urostomy.

I had a very happy childhood and don't really remember my disability being much of a problem, not  to me anyway but I'm sure my Mum would say different.  I have 3 sisters, all healthy, and I was pretty much treated just the same as they were.
I went for twice yearly appointments to Pendlebury Children's Hospital in Manchester right up to the age of 16 and was in and out of hospital during those years having various procedures done, resulting in approx 20 operations.
From 16 to around my late 20's, I enjoyed excellent health & excellent fitness.  I married and became a publican with a gorgeous Freehouse in Essex, The Three Horseshoes and life was very good for a while.

In 1994 I contracted Endocarditis (I have no idea how although a trip to the Dentist was suspected as the cause) and was in hospital for a whole month on 4 drips of powerful antibiotics a day.  I got so bored the ward nurses taught me how to make my own drips up and sent me home for the last week of treatment

I recovered well from that and everything was groovy until 1997 when my urostomy started throwing a wobbler and it was decided it had to be re-sited.

So after a 2 week stay in The Middlesex Hospital in London I had my old urostomy closed off and a new one created.  The old one had been on the right side of my tummy, the new one was put on the left.  Its lucky I'm not a fan of wearing a bikini as my tummy looks like some strange patchwork pattern!

When I think about it, this may well have been the beginning of the process I now find myself in.  After that op I went for regular outpatient appointments with the Urology & Nephrology teams.  One consultant, Mrs Venn, was concerned about the amount of UTI's I was having and ordered a Loopogram to be done (a Loopogram is an AWFUL x-ray/investigation) this showed that the uretas which go from the kidney to my stoma were a bit saggy which was allowing something called Reflux, where the urine sits in the saggy bit & flows back to the kidney damaging it.  An operation was suggested to shorten the uretas but that option was discounted, I know not why... sadly, if it had been done then, I might not be in this position now.... ahhh well.

Life moved on, illnesses came and went. After a divorce, meeting a new fella & moving to Manchester to be with him, I was now 10 years older and becoming increasingly less mobile.

In 2008 I sadly had to stop working because of other health problems related to my spina bifida & nerve loss.  During this time I had a series of very bad falls which resulted in me dislocating my knee, I ended up having to have a total right knee replacement in 2013 which ended months & months of chronic pain but reduced my mobility further.

My kidney function has been going down and down slowly but steadily for years & I have always been under the care of various Urologists & Nephrologists, including the lovely Dr Venning at Manchester Royal Infirmary.

In September 2014 at a routine Nephrology appointment, I was told the time had come to be referred to the Low-Clearance Clinic (or Pre-Dialysis).  And so it was....