Strictly Come Dialysis

It's been almost 2 months since I last posted an update, so here it is :)

Dialysis was progressing well needle wise.  I had a few weeks of no problems what-so-ever.  Then it started getting harder to get the venous needle in (thats the top needle).  I've not had any more blows and severe bruising but I have got some bruising.  One of the problems is that the needle site that was working is verrrrry close to a nerve and pushing the needle in sometimes hits the nerve and the pain is..... indescribable, it proper fucking hurts :(  So the nurses have been trying new sites, a little lower down my arm in the 'juicy' bit as Diane called it when she got the arterial needle in no problem one day.  Because new sites have been tried I have new bruises.  WHY I ever worried about my fistula ruining my arm I will never know.... look at the state of it and this seems to be the norm!!

Anyway, I have been trying to 'man-up' a bit with regard to needles and having them stuck in me on a 3 times a week basis.  I no longer have a lovely nurse hold my hand.  First large hurdle jumped.
Next was to look at my arm while the needles were in, which I found tricky as the puckering of skin with the needle going through it makes me squeam!
I decided to take a photo of my arm (without looking!) and I have been glancing at it regularly til I became de-sensitised.  Now I can look at my arm with the needles in with no problems. Second MASSIVE hurdle jumped.
Its just as well I jumped that one as one of the failed needle sites started bleeding half way through my session the other day.  When I looked down there was blood pooling between the 2 needles on my skin and the nurse gave me gauze to 'soak it all up' while she donned plastic apron & gloves to sort it out!  Luckily I'm not bothered by the site of blood!

 

I have begun my training good and proper.  I watch the nurses all the time, watching what they do and how they go about things.

Now when I get to the unit I first wash my hands, then turn the machine on and once it is ready check when it was last cleaned then connect the BiBag and Concentrate then put it in to Test mode.
While its running it's test I do my obs - weight, 2 readings of blood pressure - sitting & standing, temperature & pulse & record all these in my file.  Then I line the machine myself which I really enjoy doing.  Everything has to be date checked, everything is sterile and must be kept so so there is lots of hand washing & using alco-gel. It took me a few attempts to get the lining right but the machine shows you a diagram so you can see where they go and it soon alarms if something is wrong.  I have to put all the info into the machine that it needs to give me the correct treatment, doses of stuff and such, size of kidney (the artificial kidney which attachs to the machine).

I've spent the last week watching the next stage which is setting up the table for going on the machine.  Cleaning the table with a sterile wipe, opening the dressing pack without touching anything with hands, opening syringes & putting needles on them as caps, priming the dialysis needes.  Its all very organised and there is a definate routine to it.  Next week I'll start doing that myself.

When I started dialysis I didn't really pay much attention to Saturdays being one of my days.  But then I realised..... dun dun DUUUUNNNN - Strictly Come Dancing, my most favourite TV programme is on on a Saturday night!  And to make it worse, I am usually just coming off the machine when its on which is an involved process which means I can't watch the TV and then I drive home.  By the time I get home, its finished.  Two weeks ago we spent an entire Sunday shopping for a Freeview box which records so I don't have to miss it.  I do miss watching it 'live' though, but hey ho, you can't have everything.

 Watching Strictly It Takes Two at the unit one evening one week

 The dialysis machine

The view from the window when I'm in the end bed, although I seem to alternate between 3 beds, I don't have my own as some patients have.

A bump in the road

Getting out of the house on a dialysis & work day is a logistical nightmare....

I need to be up over 2 hours before I go to work so my body can gurgle, bang, spit & realign itself for the day ahead, so I'm up at 6-6.30 each morning.  On a dialysis day I have to make sure I have

a) a change of clothes for work (these need to go into work with me so go in my walker thing)
b) a change of clothes for the dialysis unit, cos I don't want to sit there for 4 hours in my work trousers/shirt (these must also come into work with me so also go in my walker thing)
c) a change of clothes in case anything goes awry whilst on the dialysis machine as I can't get to a loo/move at all sometimes (these don't need to come into work with me but do need to be in the car and then I have to remember to swap bags over when I get to the dialysis unit)
d) remember to charge my phone & i-pad so I have something to do (other than reading) while on the machine
e) remember the emla cream/spreader/cling film to wrap my arm in once the cream is applied - I look like an oven ready chicken
f) remember to take my card to get into the underground car park at the unit & have it somewhere handy once I pull up at the barrier.

Honestly its a nightmare, but it does appeal to my organised side!

So.... Thursday of this week arrived.  I went to work in the morning, got lots done & enjoyed being there.  At 1.30 I snuck off to the loo to baste my arm in emla cream & wrapped it in clingfilm (there is now a roll of it living in my desk drawer), I got a few odd looks off some of the prosthetists!!

At 2, I quickly got changed in the loo (again) and left to drive to Altrincham, eating a butty as I went.
At the unit Lorraine & Gill were the nurses today and I waited while they helped another patient with her needles.  After about half an hour it was my turn, obs were done (BP was a bit low) and needling procedure began.  My arm was cleaned of all the emla cream and after a bit of feeling around for the right spot, an injection of lignocaine was given - Lorraine was on hand holding duties again.  That first needle didn't work - here we go again.....

The second needle worked - huzzah!  The third needle was a bit tricky and it was in at an angle and took a bit of wiggling.  The wiggling is the stuff that sends my squeam-o-meter racing and it was now as I could feel the needle wiggling about under my skin - eeeurrrghhhhh *shudder*

But, they were in so the machine was started up and away we went.  During the next 30 minutes the machine alarm went off 3 times, there was lots of needle wiggling, lots of pulling off of tape & repositioning needles and then the cry of "Oh it's blown!" My fucking fistula, the fistula that everyone says is marvellous and is going to be so good when its matured, had thrown an utter wobbler & blown.  Oh great.... more bruising.

During the next ten minutes of them faffing trying to get the blood in the machine back into me through the only working needle, I had a tight tournequet on my arm & a needle in the blown fistula which was hurting like almightly buggery.  Have you seen Airplane?  Where the flight attendant is singing/playing guitar and she knocks the drip out of the sick girls arm?  That was me... doing a fish impression with my lips sucking in trying to pretend it was hurting!!! It was finally loosened and I breathed out, almost blowing the woman in the bed opposite across the ward.

So after all that I was sent home with an even more bruised arm which was now swollen too and told to go to CAPD in the morning for a blood test at 8am to see how urgent dialysis was.

So.... Friday morning I was a CAPD at 7.45, before the department opened as they were still having handover.  I waited, and waited... was shown to a bed, and waited, and waited, and waited (there's not another patient in the department while I'm sat twiddling my thumbs).  At 8.45am they finally took some blood.  I was 45 minutes late getting to work - aararrggghhhhhhh!!

Diane from the Altrincham unit rang a couple of hours later to say that my results were good.  My function was at 11% = eh? how did that happen.....!  and my potassium level was ok so she said she was happy for me to have a break and go for dialysis next Wednesday.  Woohooo - 5 whole days off....  **happy dance**

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 !

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.....

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....