Writing Against Narrative

A beginning, a middle, and an end is the proper way to tell a story.  But I have difficulty with that method.

Jeanette Winterson, Lighthousekeeping

 

How and what am I supposed to write?

How can I write and how much exactly are my words going to say?  How much can others ever really comprehend?

These questions – of writing to make sense and meaning, to understand, to find a narrative – have permeated these pages throughout the last four or so years of writing.

The thing is, as I wrote in an earlier post, chronic illnesses that require constant upkeep and daily management are like this: as one’s health fades in and out, perhaps passing over rough, jagged peaks and then plummeting down through ensuing troughs, so does one’s voice.  You are left stranded, and speechless.

These days, and through much of my adult life, I’ve felt like I known this scenario all too well.  Sometimes it feels like my voice has faded in and out so many times that I cannot be sure of the things I am meant to – or even want to – say.  About how I really feel.  About my health.  My life. My days of dialysis.  My transplants.  And, now, about my recovery.  How can I ever truly write what my body and mind are feeling?   How does an injured and constantly changing body find a narrative for experiences that defy the linear notion of both what an “experience” and a “narrative” are meant to be?

So this is how it is.

You speak, only to then question the very things you’ve somehow managed to say.

Wordlessness was something I discovered after my first transplant, especially while I was recovering and trying to come to terms with it all.  There just seemed so much.  The very fact of needing the transplant itself was enough to shake me. I was still in denial about needing my first transplant the very day I received it, at the age of 20.  Then there were things like what it meant to experience dialysis as a teenager, a time when we are led to believe we are meant to be carefree.  Perhaps the biggest of all, although I did not know it then, was that my life from there-on would never be the same.  Words, and not even the most profound or deep, could express the complexities of my experiences.  There was always a gap.

Nevertheless, through speaking and writing eventually I did find a form of comprehension and peace and even, perhaps, a narrative.

But now I can only see too clearly how that narrative could only ever be incomplete.

But back then, I think, possibly, this narrative in some ways saved me.   It enabled me to fit the pain and injury and the impossibility of my experiences into a digestible story so I could go on. So I could walk through the days looking forward.  Even though I knew the very experiences I had endured – the sickness of kidney failure, the unending, relentless days managing life on dialysis, the transplant and recovery – would be things I would be enduring all over again.

This is why for transplant recipients – and especially those who receive transplants just as life seems to be getting going – the task of creating a narrative can be especially complex.  Your backwards story is typically forwards too.  You can always see it there, hovering all around you, including in your days to come.

And so it is here – in telling their stories – that transplant recipients face an ever-present kind of paradoxical narrative dilemma.  Transplant recipients try to find their voice, only to have that voice shaken, un-understood, and then sometimes seemingly eventually taken away.

So, how and indeed what am I supposed to write?

Most of the time it is voicelessness that seems most honest.

But I will still write.  I will still try to speak.  Although I now know that to be true I can only ever write and speak against the grain.

There is no beginning and there can be no middle or end.   Hopefully, though, there is still some kind of sense, meaning and understanding out there to discover, to re-find.  Because this is how I now know my experiences and life will always only ever be.

Against narrative.

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Life After Dialysis: Dazzled, And Free

It’s taken such a long time to be able to write.  There are a few reasons for this.  ‘Normal’ things, like life has simply been too busy – something that is amazing and that I will always be grateful to be able to say.  But there is also another reason that stands out.  Before I write I generally have my words worked out, albeit roughly. My final text might not end up how I thought it would, but at the start I always have an idea of what it is that I’d like to say.

But summarizing how I feel and everything we’ve gone through these past eight months in a short blog has felt impossible.  There are so many emotions and so many changes and all of me wanting to look forward but also being sometimes – too often, I think – pulled back.  The years on dialysis and my fears for my health and future have certainly – but understandably – conditioned me.

So in my life and my days, just like here on paper, all of this has left me slightly dazzled: an odd combination of being wildly, ecstatically optimistic about each moment and the future free of dialysis, while also being confused and unsettled about how I got here, and about what might be to come.

Though I realise this must sound obscure.  Abstract.

Life after dialysis and with a new transplant – the psychological and emotional aspects and toll – really can be hard to know and explain.  This is even to me, and this is my second time.  Even writing this now, it’s as if I am holding up a mirror but all I see is a blur.

But if I can get this down here, focusing on the black and white and not the unknowable spaces between, does that mean that I’m on my way to figuring it all out?

Meanwhile I should say that this is my sixth time trying.  I’ve drafted blog after blog since my transplant.  So far none have been right.

The past eight months have been one of the most miraculous periods in my life.  Life has been completely transformed, and in the most wondrous of ways. At the very top of these ways is that fact that we no longer spend four days each week – for up to eight hours a time – at hospital for dialysis.  This time – together with now having kidney function and being well – enables me to do an amazing number of things.  To work more.  Exercise.  Spend more time – away from hospital – with family and friends.  To garden.  See movies.  Go out to dinner, and even have a cocktail before.  To stop and really think about what we are doing tomorrow.

But still, in some ways the past eight months feels like the longest of times.  As if by taking things day-by-day the days have stretched into years.  In other ways, it feels like only a few days ago we received the call that a perfect match had arrived.  Six months before my transplant we’d been told a perfect match was near impossible for me.  Back then, we’d been told to expect dialysis for around another five to seven years.

And although several months after my transplant, we are also still not quite through the trickiest of times: the first year after a transplant is hard work.  Constant tests and reviews.  Medication changes.  Creatinine – kidney function – spikes that send you on a whirlwind of stress and panic.  All of this makes settling in and finding your new normal challenging.  It has certainly taken me longer than I had thought it would.

But through all of this, you see so clearly what life without dialysis is like.  It is so hard to sum up other than to say it feels so free.  So much like a miracle.

This is perhaps in part another reason why the past eight months have been a little like a timeless time: I am euphoric with my luck and my chance to now do everything, but simultaneously not yet quite trusting this luck and time.

It often still feels like a good dream.

And like all good dreams there is the fear of waking up.

But every day I inch closer to trusting my miracle.  And every day I am able to now embrace so many things, being free, which I would never have let myself even contemplate imagining before.

I will continue searching and imagining and dreaming and enjoying the thrill of living without dialysis.   And while I know I will continue to be pulled back, perhaps one day I will look at it all – dialysis, my second transplant, my recovery and life as a whole – and I will realize, to my surprise, that I’ve been awake all along.

My fear of the dream ending will have become no more.

Dialysis-Free?

It’s now been one month since my transplant.  And one month since my last dialysis.

A whole month.

This equates with eighteen dialysis treatments.  More than 80 hours hooked up to a dialysis machine.  More than 100 hours sitting in the dialysis chair, incorporating the time it takes to get you ‘on’ – to be needled – and take you off.  Or, even more still, at least 120 hours if you include the full round trip from home or work to hospital for the four weekly treatments.

A whole month, dialysis-free.

It feels like a miracle.

It would not be unreasonable to think that my ‘dialysis days’ are, for now at least, a thing of the past.  But not so.  Not, at least, for me.  Those who know me, know that I am an optimist, but with my health we’ve learned to be realistic.  And right now, we are not yet out of the woods. Our new little friend is doing very well, but there is still a way to go to be sure that things are as they should be.

Fingers crossed – and my Swiss partner’s thumbs are pressed – that I stay dialysis free.

But there are deeper ways I am not sure when and if I can ever truly be free of dialysis.  Dialysis will always be with me.  Relying on a machine to live for so long shapes you.  Being sick and helpless shapes you.  Needing constant, daily medical care shapes you.  Spending so much of your life in hospital feeling vulnerable – objectified, even – while trying to feel strong and resilient – it shapes you.

Mostly, I know that it’s all shaped me for the good.  But the good blurs with the bad.  Sometimes the bad makes you feel stuck.

As my mum said so lightly to me just this morning, I’ve been ‘institutionalized’.  My self has been disciplined.

Dialysis is all about routine: what and when you drink, eat and take your phosphate binders, get to hospital, even when you go to the bathroom so that the five or so hours you’re connected at dialysis are comfortable and not prolonged by an urgent bathroom break.

Post-transplant care is also about routine.  Every day it is early morning daily bloods; then, weigh in; blood pressures; urine analysis, urine input and output measurements, waiting for consultants for your daily review followed by any urgent treatment you need.  All of this can mean you are at hospital for an entire day.  You leave exhausted and anxious.  Stressed about your fluctuating creatinine.  Worst of all, you fear rejecting your new kidney.  Interestingly too, studies show kidney transplant recipients don’t fear death, but have immense, intense fear of losing their kidney to rejection.

Tomorrow is my first day off from blood tests.  This means my next creatinine reading is 48 hours away rather than the usual 24.

A day away from hospital will be both calming and exciting – and much needed – but it will paradoxically also be blurred with anxiety.

Alas.

Our new little friend has a way to go.  So indeed do I.

So Close, So Far

For two months now I’ve wanted to write. I tried and tried, but no words felt right. It felt like what I wanted to say was hanging there, unknown even to me, in the spaces between the black and white.

A while ago I posted an entry about illness as voice. But as is the case with chronic illness you finally find and make your voice, only for it to again break.

I realize this must sound obscure. But things have happened for which there still seem no good words. No story to be told. No narrative.

One Sunday a few weeks ago we received a call that we’d been told would take years. We received what is always referred to as “the call:” a matching kidney is available. We had an hour to decide – there were some complications and associated risks – but after deliberating with doctors and family we said “yes.” Many people write and speak of “the call” with excitement and joy. Although like the first time around, which was shortly after my 20^th birthday, on this Sunday my feelings and thoughts were more mixed. So many things raced through my mind.

I think of how wonderful life would be free of dialysis, no longer having to spend four days each week in hospital, feeling normal again, being able to eat and drink as I like, doing normal things, travelling, being able to take every opportunity to make the best of life.

I think of me being lucky only because of the impossible nightmare that the donor family is experiencing at a hospital bed somewhere in Australia.

I think of the risk factors, which are considerable because second transplants are so much more complex. It feels ungrateful to say, but if things don’t go well then I may be better off remaining on dialysis, as difficult as life on dialysis is.

How was it going to turn out for me? How long would I need to be in hospital? And, as exhausted as we are, how will we cope with the extensive after-care, which includes at best every day at hospital – to check immune-suppression levels, rejection, anemia, and a range of other blood chemistry anomalies – for at least two to three months after being discharged. Even if all goes as well as possible, were we going to get through to the other side?

For much of the day I was overwhelmed: with surprise and anxiety and sadness and fear.

Logistics keep your mind occupied, though. Packing for a difficult and what could be a prolonged hospital stay. Getting to hospital. Tests to get you ready. Bloods. Chest x-rays. Being cannulated and your drip started. Organizing my unique immune-suppression and anti-rejection regime with the transplant consultants. Reading to keep my terror at bay. Sitting and laughing and trying to eat something with my family, who were all there.

In the end, it was nighttime and we are called again. The donation was no longer possible. The transplant was unable to proceed.

We can pack up and leave.

If Pain Is An “Impossibility”, What Then Is Witnessing?

So far I’ve written about my health as my own struggle.

My struggle to cope. To comprehend what, after all this time, still seems incomprehensible. To find my voice and accept whether others hear it or not.

And, my more practical struggles. The struggle to juggle my energy and time and my ambition and love of my work. To find time – with four hospital days a week and as much reading, thinking and writing as I can fit in – to see family and friends. My struggle with fluid and food restrictions. With the exhaustion and relentlessness of living with a chronic illness that requires an impossible amount of daily management.

All of this is true. But it also leaves something out. Something big. Something without which I have no idea how I would have made it this far.

These struggles are never just mine. Those closest to me endure them too. Every day they watch on, witness, and experience it all with me.

They are there for the ups, of which there are many.

But what I fear sticks – at least in the past three years – are the downs.

The daily downs, like when I wake throwing up in the middle of the night or the morning. When I’m fluid overloaded and just want to stay in bed until dialysis rocks around. When I’m so spacey with all the toxins in my blood that I cannot get about confidently on my own.

Or even just the moments when I am needled at dialysis each day, which is never entirely painless or stress-free.

Then there are the more difficult, longer term, less easily “fixed” things. My denial about needing a new kidney, yet paradoxical struggle to get on the transplant list. Close to a dozen surgeries in two years. The prospect of a very long wait for a kidney, while also being petrified of the prospect.

Ever since the beginning I’ve thought that having to watch and be beside me during the ordeal and trauma of renal failure must be so much harder than my side of the bargain. I do what I do because I have to. I have no choice. If I didn’t, it’s simple: I would die. But, then, I know my family doesn’t see it as a choice either. Something that is incredible. Magical.

But to watch on, helplessly, must be unbearable. And I worry about this. The toll it takes. I know a little of what it must be like: I’ve been there with my Mum as she went through breast cancer twice, first at the age of 43.   Witnessing the suffering of someone you love so immeasurably is one of the hardest things. It seems so much more difficult than anything my body is forced – without choice – to endure.

But if debilitating illness is “a sheer impossibility”, as Maurice Blanchot might describe it, what, then, does it mean to have to witness it?

To me, witnessing is my family helping me to balance my health and work and forcing me to have some non-work fun.

Witnessing is my partner – a scholar whose mind and body sing loudest when he is writing – sitting silently by my side working while my dialysis machine churns away.

Witnessing is my parents dropping by, coffee and crossword in hand, giving him a break.

Witnessing is my brothers there whenever I need all the time.

Witnessing – what I think must be more than impossible – is something those closest to me do every day, day in and day out, helplessly.

But somehow, unlike me, they never complain.

And they never break down.

Wounded, But Healed

“The wounded storyteller, ending silences, speaking truths, creating communities, becomes the wounded healer.”

—Arthur Frank

My last blog post has got me thinking. About illness and silence. About illness and voice. About voice and recovery. And about how serious illness is an extreme experience that can reveal things other experiences cannot.

Before I restarted dialysis in 2014 – after a fifteen year period that included eighteen months on dialysis and then life with a successful, yet now seemingly too short-lived, kidney transplant – I had thought there wasn’t much more I needed to say.   The first time around, it all happened suddenly, when I was aged eighteen to twenty. At this point, many of the words I needed – to help me to cope, to process what I was going through, and to try to heal – took a long time to find and an even longer time to sink in.

I struggled to find what sociologist Arthur Frank would call my ‘wounded storyteller’ voice: the voice that helps those whose bodies are injured become healed, even if seemingly impossibly always wounded.

But when I did find that voice I came to see and feel there are aspects of serious illness that aren’t simply about illness constituting a lack. As brutal and traumatic and un-ending as the wounding process can be, there are positives.

As much as my health takes away, it also gives much back.

My health is a big – inseparable – part of what has made me, me. Vulnerable and needy at a time in life when all most young people can think of is breaking free was hard. But in the years after, once I’d found my voice and come to reckon with how my life was going to be, I realized illness had made me see the world anew.   It cultivated a sensibility and, eventually – once I’d learned to not reflexively retract back – an openness to the world and people and ideas that maybe I would have otherwise arrived at one day, but maybe not too. Yes, fragility humbles. It softens. And it can make you crumble. But vulnerability can be strength. It can motivate. It can help you focus on what really matters. It can help you to block out surrounding noise.

Maybe it’s a cliché, but it’s difficult to think of an aspect of my life that is not in some way positively influenced by my challenging health. Being sick young brought my family – already close – that much closer. It told me to grasp every opportunity imaginable and possible. To follow my passions. To take risks. To love and live and enjoy every moment. To look forward.

These days – as my time on dialysis drags on – it sometimes seems that the many positives my health has brought me, as well and those closest to me, grow more distant. But I know the flip-side of my health – the changed perspective, sensitivities, humility, and love of life – will always be with me.

No matter how dark some days seem, fragility will always be my strength.

And I will always be – as precarious and testing as it may sometimes seem – wounded, but healed.

 

Illness as Voice

When I began this blog I made a rule with myself. My posts had to say something. They had to make a clear a point. They had to speak meaningfully about some of the things that end-stage renal failure and dialysis patients go through. Things that ultimately – understandably – hold little if any meaning for those who are not immediately affected by them.

First I wrote for me. But now I understand I really wanted to provide a window into a world where there very rarely is one.

I wanted to make living on dialysis – something so very unordinary and irregular – relatable. Even if it was the more “everyday” aspects of renal failure that I wrote about – like daily restrictions or fistulas or the ups and downs of the tedious weekly hospital routine – I hoped to communicate what dialysis patients go through and how in their own ways they try as best they can to deal with it.

I also somehow, and for some reason, wanted to make my entries upbeat.

So, these past few months I’ve waited. I’ve wanted to write an entry that enabled readers to understand.  And, I’ve wanted to write a happy entry. Or, at least if not happy, then optimistic.

But in truth the past few months have been hard. The thing is, it’s also seemed impossible to communicate exactly how they’ve been hard.

After two years back on dialysis, the toll that renal failure and life on a machine takes ultimately seems to be something you can really only understand when you’re forced to live it. The daily difficulties – like managing fluid, trying to work and focus in spite of the constant fatigue and fogginess, wondering if today either morning coffee or night-time exhaustion will make you throw up. The worry about scheduling your work-week and especially meetings because you just don’t know how you will feel one to two days in advance. Like all chronic illnesses that require daily management, these little things all mount up. Then there are the bigger things and also the constant worry about when they will crop up – like problems with your fistula and needing further surgery on it. Or being so anemic that your doctors start to contemplate the possibility of additional, much more dire, health diagnoses. Or maybe, catastrophic above all, that your heart won’t handle the drastic change in fluid and potassium concentration for as long as it’s going to need to.

Maybe for me this is what is hard: when illness and what it all means seems to defy understanding. When the everyday and the bigger picture issues of my health burst through the background noise to feature on the main stage. When illness – restrictions, hospital, exhaustion, vomiting – becomes your meaning and your other meanings seem to start to fall away.

So, in waiting to post again I think I’ve been hoping I’ll find a way that makes it all simple. Able to be understood. And not just for readers. For me, too.

Maybe what I’ve needed is to find a voice for it all. No matter how mundane and ordinary.

A few months ago what I thought I needed was for people to stop and really hear this voice.

But perhaps what illness needs is to find a voice, and then be let go.

Guest Blog: A Brave New World

One of the best things about dialysis is the people you meet. People who, like me, make the same three or four trips each week to hospital. Old. Young. Hopeful. Despairing. In one sense, we all do it together.  We often witness each other’s struggles and, whether silently and unknowingly or sometimes consciously, we help each other through it.  

The following blog – very happily my first guest entry – is by a new friend at my dialysis unit, Vincent Scarcella. Aged 44, Vince is still one of the youngest dialysis patients. For all his trials, which have been considerable even since he wrote this entry, he is optimistic and bright. This is his story.

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I am not really sure how I found myself here. On dialysis at 44 years of age after having previously been in very good health. Don’t get me wrong.  I was born with a kidney disease and I knew I would eventually end up here, but things were tracking well I didn’t except the wheels to fall off until much later in life.

Just a few short months ago I was running 20 kilometres regularly and hiked non-stop for over 24 hours. I wasn’t superman but I was fit. When my kidneys started to fail, I would get home from work at night and literally fall asleep as I was getting changed. The decline in my health was rapid and it was stark. Not being able to control my circumstances was probably the most difficult thing to deal with. I am far from a control freak, although my ex-wife would probably not agree, but feeling like I was completely out of my depth was not something I was used to. I didn’t take any solace in the fact that my doctor was similarly lost for words or explanations.

The doctor said my kidneys were dying and I would need to start dialysis. I didn’t argue. I wasn’t in denial. I didn’t have questions. I was numb.

I had surgery to have a fistula created in my arm, which would make it possible for the needles to draw blood from my body, process it through a machine that goes ‘ping’ and return from where it came.

Six weeks later I started dialysis and it’s now been three months. I’m hooked up to a machine for four hours at a time, three days a week. When you take into account preparation, finishing and travel time it takes almost twenty hours of my life each week. The end game of all this is a transplant.   I have heard of horror stories of rejected transplants and even serious illness or deaths from transplants but I am confident that medicine has come a long way so I am looking forward to the day that I have a new kidney. The rub is that, based on my blood type, I may have to wait for up to five years for a kidney to be available. I am on “the list” but “the list” is very long.

I won’t go into the detail about the intricacies of dialysis except to say it cleans the toxins out of my blood because my kidneys no longer can. Without it, I would die. To be honest, I don’t know much more about the process. I haven’t wanted to know. I don’t think I’m in denial about having to spend so much time of my life in hospital, but as I have such a long wait ahead of me, I don’t see the point. I’m sure I’ll educate myself at some stage. Time to do so is not something I’m short of.

I spend my four hours working, watching television, reading, eating and thinking. Thinking is something I do a lot and I have to say that a lot of the time it is a thoroughly unpleasant experience.   I think about what I am missing out on “in the real world”. I think about the fact that between work, spending time with my children and dialysis I have literally no time to myself. I think about how my next overseas trip appears so far away it doesn’t bear contemplation. Any issues I might be facing in day-to-day life seem to be exacerbated and magnified when I have so much time to think. I feel deep down I am becoming a more negative person, which scares me and makes me sad in equal measure. This is something that I am sure all dialysis ‘inmates’ encounter and certainly some of the friends I have made at dialysis have shared similar concerns with me.

In reality, I am one of the lucky ones. I am young and healthy compared to most patients and I have only been subjected to the daily grind of dialysis for a short time. I know it will get harder and I know I will have bad days and dark times. So far I think I have coped as best as I could have expected.   The best support I’ve had is being able to talk to other dialysis patients. Sometimes for a long, detailed warts and all chat about how each of us are coping. Other times it’s just a nod and a hello in the preparation area when I’m writing down my observations before getting hooked up. Perversely, I take a level of comfort from knowing there are others facing the same drudgery and grind that I am.

My friends and work colleagues have been very supportive but I really don’t think they grasp what I am facing. For all intents and purposes I look like a healthy person. In fact, since I started dialysis, I have felt so much better. I am running again and back doing yoga.   I have a lot more energy and don’t fall asleep at the drop of a hat. My eyes don’t make me look like an extra from the Walking Dead anymore. It’s more the mental aspects. The things that people can’t see. The wear and tear of a monotonous routine. The impact on my social life. The fear and loathing of five more years of this.

 

Facing Up To A Fistula

My fistula.  Such a double-edged sword.  I love it and hate it.  Admire it and fear it.

You might be asking: What’s she talking about?  What’s a fistula and why such strong feelings?

A fistula is a hemodialysis patient’s permanent dialysis access.  A vascular specialist creates it surgically, ideally in a patient’s forearm or, as in my case, upper arm.  To make a fistula, the surgeon joins a vein to an artery.  Arterial blood then flows not only down the artery like usual, but also back up through the otherwise smaller, weaker-walled vein.  Arterial blood – pumping stronger and faster than venous blood – strengthens the vein, building it up so it is tough enough to bear being needled by two dialysis needles 3-5 times a week.

Perhaps this all sounds simple enough.  A small-ish and easy enough surgery to make the fistula and then away you go.   Well, kind of.  In reality, having and taking care of a fistula is often far more complex.

There are various challenges and difficulties – physical, psychological and emotional – that can stem from having one made in your arm.

The first time around – when I was initially diagnosed with kidney failure at 18 – my nephrologist took me to a hemodialysis ward to show me what it was all like.  Maybe he was testing me out.  My starkest memory is of my horror at the big, ropey masses in patients’ pinioned-out arms.  Call it denial, vanity, whatever you want, but back then I couldn’t imagine ever having a fistula.

Fifteen years later, my fistula has become an impossible reality.  Back then I said I wouldn’t be able to bear the look of it – something that is still true. But it was also more than this. A fistula is forever. Unless it is damaged and has to be tied off, it’s always going to be there. A permanent reminder of my failed kidneys and all that has ensued.

Fistulas change over time. They start relatively small and unnoticeable, but due to the dramatically increased blood flow and pressure through the vein, together with the constant needling, they can grow very large. The positioning of the needles and swift blood flood when on the dialysis machine can also cause the vessel to further contort in peculiar, even grotesque ways. They become big and ropey and hard to hide. People stare, shocked at its shape and size.

But there are also other physical challenges and oddities of having a fistula.

Fistulas can easily ‘blow’. Unaccustomed to be being stuck with gigantic needles (approx. 2-3 mm in diameter), the soft walls of a new fistula may give way and break when you’re being cannulated. This causes a hematoma – painful, rich dark purple bruising – that lasts for weeks. While this is common with new fistulas, a blow can happen at any time, even in an old, well-developed fistula that has been in use for years. I’ve been learning to cannulate myself for around six months now and as I stick myself it is still my most present fear.

A healthy fistula should also have what they call a ‘thrill’: a constant, rhythmic buzzing that indicates arterial blood is flowing through the fistula as it should. Basically, if you can feel the thrill: All good. If there is no thrill: Get to hospital fast. No thrill means a clot may have formed, which needs to be immediately addressed.

Consequently your fistula arm needs to be treated with special care.  No lying on your fistula arm.  No carrying bags or books in a way that restricts blood flow.  It’s even hard to raise your fistula for long above your head.  A steady ache develops that tells you to put it down.

At the same time, my fistula is my lifeline. I would not be alive without it. The steady, strong, rhythmic pulsing – which can bring tears – also signals that everything is going to be okay.

Dialysis… Is Never Just Dialysis

Relentless. That’s what I would choose if I had to describe living with kidney failure and on dialysis in one word.  Living with kidney failure just never goes away. The constant maintenance and restraint you have to have is exhausting. The time you spend at hospital eats into everything. Nothing about your day is free of the constraints the condition presents. But paradoxically it is these constraints – and your dialysis days – that keeps you alive and as well as possible.

Some say that dialysis is like a roller coaster. Each day with your ‘on’ and ‘off’ days all the good and bad things in your blood go up and down, swinging you back and forth from feeling great to often – depending on what you eat and drink – really very ordinary. After dialysis you feel the best, but unfortunately it’s then all uphill until you walk through the dialysis unit’s doors in two days time. Well, that’s how I feel at least.

The roller coaster you ride is also an emotional one. For weeks you’re stuck in a routine: your dialysis sessions are another thing to fit in your week. You get to hospital without thinking about it. But, then, a switch is flicked. Suddenly simply making it to hospital and the dialysis ward seems too much.

I think of all I could be doing out there, in the world, living my life. I think of my work, my research. What could I be writing? What could I be reading? What non-work fun could I be having? At hospital four days a week there is never enough time. My laptop is full of papers half written. Grant proposals half started. Articles sit half read, stacked in piles based on topic and priority on the floor of my study. I’m not sure when I last saw some of my oldest and closest of friends.

And all of this this is to say nothing of everything else – the physical, psychological and emotional constraints of kidney failure.

The physical constraints alone can sometimes seem impossible. Each dialysis session you sit, tied to a machine, unable to move, for around 5 hours. Rigorous fluid restrictions are in place between each session. The general rule is that a patient is permitted 500ml per day, plus whatever urine output they have. (And when calculating the 500ml this sadly includes all fluid: water, coffee, yoghurt, ice cream, etc. as well as any food that contains liquid, such as pasta or rice.) Then there are the dietary restrictions.   Potassium and phosphate need to be kept to a minimum. Phosphate binders must to be taken with all meals and snacks. Fresh fruit and crisp salads and vegetables are pretty much a thing of the past.

The time spent attached to the dialysis machine, together with all of these restrictions, is what keeps dialysis patients well. While my twenty or so hours of dialysis each week is nothing like what a healthy person’s kidneys do 24 hours a day 7 days a week, it’s what keeps me here.

But, still, sometimes all of this – and everything else I don’t even want to think of right now – can just become too much.

Relentless.