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 !

At last - it worked!!

By the time Tuesday came around, I was dreading going back to MRI, but I pulled up outside at 7.30am & made my slow way to the department, all the time thinking of turning round & going home.

There weren't too many people waiting, maybe 4 of them before me, I recognised them all from the other days.  A lot of the nurses who came in & out of the waiting room I recognised too.  I was weighed (76kg - a bit down from last time) and taken through.  I was put in the bed by the window in Bay 1 - the same bed I was in the first morning and hoped it was an omen as it had worked that first day.

I was told an expert needler was coming to do my needles - they said that last Wednesday and look at the state of my arm!!  I can't remember the ladies name but she really took her time, feeling & listening with the doppler scanner thing and when she was confident she'd found the right spot, the first needle went in and it worked!  Another nurse appeared and she held the doppler on my vein as the other nurse inserted the second needle which also worked - BONGO!  Relief!!

I let go of Danielle's hand (Danielle was the nurse I'd had the most contact with at this unit and was very lovely) and relaxed into my 3 hours session.  Danielle said this time they were going to take some fluid off today.  I'd read about this on the Renal Support Group so vaguely knew what it was about.  They only take a bit off at first and increase it as you go along.

I was sleepy but can never sleep in hospital as there's too much going on.  The alarm on my machine went off at one point when one of my levels rose too high but the expert-needler-nurse just pulled one of the needles out a teeny weeny bit and it went back to normal.  Another nurse appeared to give me some drug called Aranesp, which is used to treat anaemia & increase red blood cells.

A senior nurse came to have a chat with me, I remember she was called Rachel but I can't remember her job title.  She just again reassured me there was no rush to home train and if it didnt work out it wasnt the end of the world.

3 hours after I started, I was taken off the machine.  As I'd had to start taking Warfarin the day before this session (because of the Atrial Fibrilation) it took a little while and a change of dressing to stop one of the needle sites bleeding.  The nurses put the dressings on so tightly, obviously to apply pressure to stop the bleeding, but the dressings hurt more than the needles!!

I was weighed on the way out today - 75.6kg, that's .4kg lost in fluid.  As a diet though I wouldn't recommend it!
I managed to walk extra specially slowly back to the car, trying not to let the walker roll over anything bumpy as the vibrations went up my arm and really hurt, which was ok in the smooth hospital corridors but as soon as I went over the pavement it was a bit tricky.

Later in the day after a doze, an awful lot of wind, and eating lots (dialysis seems to give me an appetite) I got very emotional and teary.  Not sure why.

Typical!

So, you know I said after my first 2 hour session on the machine that I hoped the rest would go as smoothly....

I arrived for my second session on Wednesday morning, bright and early.  I'd gone on my own as Hari had to work.  The walk to the department took quite a while from my car with my walker and I was more than a bit knackered when I got there.

An Irish male nurse took me through and got set up but after a poke & a prod of my veins, a listen with the doppler machine, he decided to go and get someone else to put the needles in.  A senior nurse (I think) came and had 3 attempt to do the needles but each time the fistula blew.  The nurses around me constantly reassured me that this can happen and usually does, as the fistula is new and hasn't been needled before and will toughen up the more its needled.  This didn't sound like a good outlook to me - 'you're arm doesnt like needles being stuck in it so we need to stick more in to get it used to it'....

After the second needle and a bucket full of tears, my arm started to bruise quite badly and swell up.  She tried a third but that also blew the fistula so it was taken out and it was decided to send me home.  Once Hari arrived, he drove me home.  I was thoroughly despondent & not at all hopeful.

My arm straight after the needling attempts

The bruising the next day

The next session was the Saturday, again we were there for 7.30am and had a very anxious hours wait to go through.  Again it was a disaster and only one needle was tried as my arm was so incredibly sore and I got myself in a bit of a state.  The nurse sought advice & came back saying that they weren't going to try again in my arm.  They would take a blood test (from my non-bruised arm) and if those results came back showing that my function had decreased I would have to go back in and have a line put in my groin to be given the dialysis through.  If they came back ok, then I would come back next week to try again.  I just wanted out of there!!

So we came home.  Moving about was very hard to do with an arm which hurt to even shift it from one position to another but to use it to lean on my trolley of stick to get upstairs to the loo was agony so I stayed on the sofa for a few hours feeling proper sorry for myself.

Early in the afternoon, the hospital rang to say my levels were ok and to come back Tuesday morning for the next session.  I was more than happy with that....

2 hours on the machine

One good thing about dialysis at 7.30am on a Monday morning at a hospital in the centre of Manchester is - I COULD PARK, NO PROBLEMO - Woohooooo!

The waiting room of the dialysis unit was quiet & peaceful, with people waiting their turn on the list as they do week in week out.  I was weighed and taken through to choose which bed I wanted, I chose the one at the end of Bay 1 next to the window.

I spotted a young student nurse and it was the same one who had pushed me back to my car after a visit to Dr Hirst's clinic last time - Megan.

After checking paperwork, a bit of a chat with the nurses, a good look & a prod of my arm, the nurse arrived with a tray and began setting up her equipment.  Getting the needles in didn't start well.  Although my fistula is very powerful and buzzes like billio, it's very windy & twisty and tricky - apparently.  The first needle failed and hurt very, very much. Megan (the student nurse) held my hand as I am such a wuss and a nursing sister called Lorraine came and managed to get the next 2 needles in ok, after first numbing my arm with an ice cold spray.

For the next 2 hours I dozed a bit, watched the routine on the ward and played games on my i-pad, after being given strict instructions not to move the arm with the needles in!

Looking like a beached whale attached to the machine.

The procedure for coming off the machine seemed almost as long as getting on it.  Everything was done in a perfectly well rehearsed manner.  Apparently I'm a bit of a bleeder, so getting the needle sites to stop bleeding was a bit challenging, and hard balls of cotton wool strapped with tape were put on them to apply pressure.  I was given a some cream to rub firmly into the bruises which were starting to appear.

After making sure I felt ok, not light headed or wobbly, we left the unit.  Not a bad first session all in all.  I hope the rest go as smoothly.

Bruising after my first session.

Dialysis or bust

On a routine 6 weekly check up with the multi-disciplinary team that is Pre-Dialysis in July 2015, I saw Dr Gill Hirst.  I'd started a job earlier that month after 5 years out of work and I felt pretty good in myself.  Which is what I said when she asked me how I was.  Later that afternoon she rang me and said my eGFR reading had gone done to 8% from 10% and could I go in Friday morning for another blood test, she also said not to worry, it could be a rogue result.

Turned out it wasn't a rogue result, it had gone down, so I was asked to go in the following Friday and she told me I was to start dialysis.  I saw the pre-dialysis nurses who did their MRSA swabbings and yet more blood was taken.

I'd already discussed that I wanted to do home haemo so I would be going to the Altrincham Renal Unit which was new, it used to be done at Wythenshawe, and I'd been for a look round that unit earlier in the year.  New NHS policy dictated that the first couple of sessions had to be done at MRI as more general medical staff were on hand should anything go wrong (a little worrying).

So I went home thinking about how crap the timing of it all was, what with the new job and feeling fine and everything.  Ho hum.....

The World is Your Fistula

I was at MRI bright & early on FRIDAY 13TH January, a date I won't quickly forget for my fistula operation.  The one I had been dreading.  Prior to this I'd had various vascular scans, my veins had been poked, prodded & scanned.  I'd pleaded to be allowed to have a general anaesthetic or even a sedative but was told no, it had to be done under just a local anaesthetic, so I was absolutely DREADING it.

It didn't start well, although we checked in when we arrived & were called through to a bed along with everyone else, it seems we were then forgotten about by the nursing staff.  A doctor did arrive to check I was me and look at my wrist etc but nothing else.  A porter then arrived to take me to theatre, I didnt have a hospital bracelet, hadn't been weighed, hadn't been through 1001 questions with a nurse, hadn't been given a gown - I doubted they wanted me to go to theatre in my jeams and jumper.  Action stations were called and in a flurry I was gowned up & kissing Hari goodbye and off to theatre.

I asked for someone to hold my hand, as I am such a wuss.  Everything was checked, I was asked if I wanted to watch which I said I absolutely did not!  And they began.  The pain from the needle for the anaesthetic right in my left wrist; in that bit on the underside next to the veins in the centre, right by the edge of the hand - right there.  Fucking hell it hurt, like nothing else!
After that, I didn't get any more pain.  No pain, but I could feel everything they were doing, even the cutting into the skin.  It was all very wierd and very squeamish making.  I am not ashamed to say there were a few tears.  But an hour later, I was being taken back up to the ward with my arm swathed in bandages.

The doctor who came up with me said he's be back in a minute.  3 hours later we were still waiting when a nurse said he's gone back to theatre & we'd have to wait til he'd finished surgery for the day.  Sod that. I'd been here since 7.30am and everyone else who'd had their surgery had been discharged. So without knowing how long I had to take asprin for we went home.

A day or so later when I took the bandage & dressing off I noticed how red it was and that with me feeling a bit unwell I was told to go to CAPD dept (Continuous Ambulatory Peritoneal Dialysis) and get checked over, which we did.  They gave me some antibiotics as they suspected an infection.  It cleared up eventually.  I've not had any problems with it and its a really powerful fistula.  Verrrry buzzy.  With me being such a wuss with my squeam levels, I don't like looking at it, its not the scar I dont like, its the vein itself because as it has become matured, it has started to show on the surface of my skin, so I chose to keep it covered up when I can so I dont have to look at it!

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....