My first kidneyversary – one year on from transplant!

As my first ‘kidneyversary’ just flew past, I felt it was time to connect with you all again; to apologise for my radio silence; and, most importantly, to give you an update! To be frank, I am swamped with things I want to write in this kidneyversary post. I have decided to share the highs and lows of getting to know my new kidney over the past year – and will put the immediate transplant aftermath in the hospital, in a separate blog.

Firstly, I must introduce you to KP, my new kidney! I will not bore you here with the ‘method behind the naming madness’ but will be more than happy to share with you offline, if you ask.

I am delighted to announce that, as I type, I have that ever so slight feeling, of needing to run to the loo! This is a feeling I have come to know well and – even when the timing is most inconvenient – it is a feeling I relish. I am not surprised I feel that tell-tale pressure on my bladder again, as I have had 2.5 litres of tea (decaf of course) so far today. When people joke that ‘Scots drink a lot’ I had no idea this is what they meant!

On that note, I must prepare any potential transplant patients reading this… Assuming (fingers crossed for you) that all is going well post-op… expect, firstly, to be running to the toilet like your life depends on it – which in a way, it does! Having gone through dialysis and being told you can’t have more than 500ml a day. It is rather a shock to the system, to come round from transplant, to be told that you should now drink upwards of 3 litres every single day. You do get used to it – but even the happiest transplant patient will feel like a balloon at first and be sick of the site of the toilet within a couple of days!

Since transplant, it has been quite a year for me. The recovery was not as instant as my impatient nature would have liked and I spent, what feels like, a very long time, certain that things would never be well again. Things were not back to normal, even though I did carry on with life as if they were. Every day was a struggle, as my body got used to the kidney, the drugs, its new state. However, looking back, things were ‘righting themselves’. Much like the ‘frog in the water’ I, paradoxically, failed to notice that the water was cooling down!

Post-transplant time is a time of hectic madness and worry – and I was not prepared for it. I had spent so much time worrying about the operation (which was actually the easy bit for me as the patient) – I had absolutely no concept of what would be required of me afterwards. The endless days spent sitting in the hospital, for the third blood test that week. The scans, the questions, the detail and the nervousness. Never really feeling confident that the kidney was still working – and never feeling like the kidney failure, dialysis or the transplant could ever be anything other than at the front of my mind. Those freezing January mornings, feeling sleepy, disorientated and seeing patients and staff who I would come to know so well over time seemed to go on for ever, but now seems like a distant memory. Am I complaining? Not a bit! The level of care I received at the hands of our NHS was incredible. Not once in a year have I ever felt alone, mistrustful, or uncared for. If there is even the slightest hint that all is not absolutely perfect, they were on it.

If anything, I would say that, as a patient, one is perhaps given too much information. I must admit to having stopped the nurse from going through, in great detail, all the terrible things I might go through now I have the new kidney. I wanted to keep things, very much, on a strictly ‘need to know’ basis. Complications may arise and, of course, I want to know what to look out for, but I really didn’t want to spend my precious gifted time, worrying instead of living.

This on-going looming potential threat of a million things that could go wrong was the most difficult thing to cope with post-transplant for me. I spent so much time worrying about what would happen if the kidney didn’t work; how many viruses I would now catch; or tirelessly fretting over the latest horror story I had heard about the immune suppressant drugs. The truth is, maybe I am one of the extremely lucky ones, because all I have to report is positive. I have no side-affects from the drugs what-so-ever and the kidney is working well (knock wood!)

Life is certainly different from how it was in many ways; I am healthier; I need to remember to take the ‘kidney pills’; and I absolutely must drink more than anybody can believe! I always have KP at the back of my mind, but this is no bad thing. I am due my 3-monthly check-up tomorrow, which always makes me nervous, but I will go in with my fingers crossed and my bladder full!

I write this as a brand new being – and feeling like the luckiest person in the world. I have not thrown up in over a year. I have had no headaches, no sickness, no sleeping during the day – none of it. I can barely recognise myself. I can go to work, then the gym, followed by drinks and return home late – and I feel as normal as anybody else would. I can’t describe how incredible this feels, to be able to say I feel ‘normal’ when, in truth, looking back, I had no idea what normal was. To even feel an interest for things again, things that I had lost. The desire to go for a walk, or to the theatre, to listen to music, or watch a film. All of those little, every-day events were rather eclipsed by the kidney failure for the longest time. I now feel like I am living, rather than just surviving. I had the best December 2017 I could have wished for, because I was able to fall in love with Christmas all over again. I could go to the carol services, the Christmas parties – join in the fun and do all the things that made me feel Christmassy – something that was snatched from me for years by kidney failure.

As my transplant happened just before Christmas, I can recall, rather bizarrely, a wonderful troop of carol singers, regaling the ward with Jingle Bells, over and over and over again – because that was the only tune they had rehearsed at the time. I was not sure how I would feel upon hearing it this Christmas past! Fortunately, it reminded me of the best Christmas gift I could have ever wished for – one which can never be topped!


Transplant Time

(as promised, ‘the kidney is working; we are well and I have just had the greatest pee of my life!’ – 14th December 2016.)

So December had arrived and everybody was anticipating the 25th of December, Christmas day, but not me. December 14th was to be my Christmas day. The day when my loving partner Andy would give me the best Christmas present imaginable, a good – but slightly used *one careful owner!*, kidney. So whilst others rushed around buying gifts, attending parties and consuming heroic quantities of delicious Christmassy food – I had my mind fixed firmly on just one thing – the impending day that would *hopefully* change my life.

One of my biggest fears – in the lead-up to transplant, among many, was that I would not have the emotional capacity to go through with the transplant. I had very many wobbly moments where I felt the whole thing was just impossible. I could not imagine packing for the hospital; getting the car to go to the hospital – everything seemed terrifying. I didn’t want to go through with it and – more importantly – I did not want to put my partner through it. However, I was quickly and firmly told by Andy that he was getting rid of that kidney and – if I did not take it – he would give it to somebody else!

There were some days where I just wanted to get on with it – and others where I just wanted to burry my head in the sand – a desert preferably! I recalled, with great frequency, having my dialysis line inserted, when – I am not proud to say – I was a hysterical mess. The transplant would make the line insertion look like child’s play – and I was convinced I would freak out and the whole thing would have to be called off. Throw in my overwhelming fear of needles and you have a recipe for a very tearful disaster!

Then Sunday 11th December arrived – a day that would fix my mind firmly on going through with that transplant, no matter what. December 11th I got the flu. I was so ill with it – I could barely move – but my only thought was, ‘please, this transplant must go ahead’. The fear that it may not happen made me realise that the new kidney was the thing I wanted most in the world and I would go through anything for it. Fortunately my flu had gone by Monday evening *a miracle in itself* and we were soon on admission day, December 13th *unlucky for some* – but not for us.

Contrary to my worries and fears – I can honestly say that I felt very little trepidation. The mind is an incredible thing. I do believe that in times of great fear or peril – it has the ability to shut itself down to an extent, so as to preserve the body and allow what needs to be done, to be done. My fear of needles had completely vanished, which was a very good thing indeed, as there were a lot of needles in my future!

The preparation day (T – 1) went by relatively quickly and without fuss. Final tests were done and the doctors ensured they knew where to cut; by drawing on us with felt-tipped pens! A slight, worrying hitch occurred when the hospital FORGOT that I absolutely must have dialysis before transplant. This meant me having, only two hours, emergency dialysis in the middle of the night before transplant. I was so tired by the morning; I’m not sure anaesthesia was necessary!

So ‘transplant time’ had arrived and Andy was taken away from me at 8am for his nephrectomy – and I had three hours to wait, worry and contemplate – the bit I was dreading the most. I simply lay down, listened to some comedy and thought about Andy. When, a few hours later, I heard he was okay, I sighed with relief and it was now my turn.

As I was wheeled through the chilly hospital corridors, snuggled in my blankets, towards the operating theatres – I kept my fingers firmly crossed the whole way; desperately hoping that the new kidney would work. After waiting for a while in a reception area – it was now time for me to ‘go under’. Having confirmed my name and date of birth for the last time, the game was now on! Being put to sleep was an interesting – and not unpleasant experience. I was firstly covered in, what I can only describe, as a giant deflated lilo. Warm air was then pumped under this lilo-like thing and within seconds I felt very snugly and warm indeed. The needle was placed in the back of my hand and the oxygen mask placed over my face. I remember taking the mask in my right hand and being coached through breathing deeply and calmly into the mask. After a short amount of time, I was enveloped in a misty fog, I felt a great feeling of euphoria and the next thing I knew – I was waking up on the recovery ward.

When I came round, my immediate feeling was one of pure elation, because I knew it had worked. Despite me insisting that they MUST tell me whether it had worked or not, as soon as I awoke, I knew that it had. I can’t really explain how I knew – but my body knew. For one thing, I was absolutely desperate for the toilet – more desperate than I have ever been in my life. After being assured that I had a catheter in – I was told that the feeling was so strong, because the kidney was not only working, but working extremely hard. So, with this in mind, I could let go of my fears and my pee! …and with the kidney producing over 500ml of fluid an hour – I most definitely did let go of my pee!

Kidney failure: a partner’s perspective

Depending on their age, people tend to remember where they were when Kennedy was shot; when Neil Armstrong walked on the moon; when the Berlin Wall came down; and when aircraft flew into the Twin Towers. I remember the morning of Monday 14 March 2016, in a dingy corner of St George’s hospital in Tooting.

We knew that Stacy’s kidneys were functioning at only 2% – A&E had told us nearly 10 hours earlier. Now, in the renal ward, the consultant is saying “Now, you’re probably wondering if there’s anything we can do about it…”

I’m suddenly aware that I’m holding my breath. Basic rules of speech dictate that the pause can have lasted no more than a second but in my head it went on for several minutes. “… and unfortunately there probably isn’t.”

And that was that: through the night I’d glibly told Stacy that it couldn’t be anything to worry about – she’d walked in there ok – and she’d prayed that, if only this could be all right then she’d be good, eat healthily, take care of herself … now we knew that no one had been listening. At the time, I didn’t know what it all meant; but I was pretty sure nothing was going to be the same again.

Hello everyone, my name’s Andy and I’m Stacy’s partner of 4 years, 11 months and counting. Stacy’s temporarily given over her blog to me so that I can do my best describing life as a relative of someone with renal failure.

I’m not actually sure that I’m the best person to give this insight as I doubt that my experience is typical. Truth be told, Stacy makes it easy for me. She does much better with this than I would have done in her place. The main thing is that she has never wavered from the belief that she will come back from this better and stronger. I have met people (not necessarily kidney patients) who never seem to truly believe that they will recover from their ailments – but that is not a thought that we entertain. Stacy is totally focussed on getting well enough to travel.

Perhaps this is best exemplified by the fact that my 32nd birthday fell the day after Stacy was discharged from hospital: and a whole load of presents showed up in Amazon boxes. Apparently you can still shop from a hospital bed.

So I was lucky to have someone as strong as Stacy. And I was lucky to have a supportive employer: take a bow Hymans Robertson LLP. I read a stat somewhere that the vast majority of people with chronic health conditions live in poverty: thank heaven that was not something we had to contend with. I was allowed to work from home every Tuesday and Thursday so that I could drive Stacy to and from dialysis. In addition, I had countless ad-hoc working from home requests approved at short notice so we could attend any number of tests of consultations. My bosses’ unwavering attitude was “just go – and make up the time when you can” – superb. Had I still been working for some of the FTSE100 companies – or even some of the large public sector organisations – who I have worked for in the past I do not think I would have got anything like the level of support and I completely appreciate that 95% of people in my position are not as lucky. I will forever be in Hymans’ debt.

And, despite all this, it still got to me. The most memorable occasion occurred when Stacy was in hospital following the initial diagnosis. It followed one of several NHS mess-ups, the details of which I won’t bore you with. Shortly afterwards I was coming back from getting my lunch at Tooting Broadway station. As I pressed the button on a pedestrian crossing I saw a cyclist look around and assess the situation and I knew what was about to happen.

“It’s a red light, mate.” I shouted incredulously. He sailed on through. I screamed expletives after him and collapsed in tears by the side of the A24. This must have looked pretty bloody odd to the cyclist: a grown man in tears over a minor, not-at-all-dangerous infraction of the Highway Code. I’m not sure that I can fully explain it now, but at least it happened well away from the ward so that I could at least maintain the pretence of being strong in front of Stacy.

Of course, the initial period following diagnosis is by far the most stressful, and things settled down into a routine fairly quickly. And together we got through it. It’s only now when I look back on it that I realise how tired I actually was. I guess there might be practical reasons for this: trying as I had been to frantically finish some piece of work and race over to the dialysis clinic, whilst wondering when I was going to make up the time taken to attend a meeting with the consultant in the morning. But then again, why am I complaining? – it’s much worse for the people having dialysis! I think actually that the most tiring thing is just the worry: from the immediate worries such as when Stacy’s throwing up during dialysis and you want it to stop, through to the long-term nag at the back of your mind that you can never quite get rid of: what if this is a battle that we ultimately end up losing?

I think I might actually have been cracking up by the end of 2016. I went through a phase of being able to find deep meaning in the lyrics to pretty much any song, as if the writers of pop songs were actually ancient philosophers. To demonstrate how absurd this was, consider the lyrics to “Sit down” by James:

“Now I’ve swung back again

It’s worse than it was before.

If I hadn’t seen such riches

I could live with being poor.”

When I heard this song on the radio one December morning I actually interpreted it as meaning that if I’d never known what a vibrant, vivacious, confident and fun person Stacy was when we met in 2012 then it would be easier to cope with seeing her on dialysis. I suspect that this probably isn’t the meaning that James were going for when they wrote “Sit down”.

You have to work really hard not to let the kidney failure take over everything. In some respects this is inevitable: it’s difficult to go away on holiday when there’s a maximum of 3 days between dialysis sessions (you can get dialysis whilst on holiday but we could never face the admin involved). But we definitely were guilty of having too many days where we let our conversations drift back on to medical stuff. It would probably have been better for both of us if we’d had a few more days where we just completely blocked it out. I think I’ll always feel slightly guilty that I went to work as much as I did and never switched to part-time. Of course I justified this to myself by saying that we needed to pay the mortgage, and needed to save so that we can travel when Stacy eventually gets better. But deep down I know that there’s part of me that was grateful for those 8 hour periods where I could distract myself by thinking about the merits of using commercial mortgage loans to support annuity liabilities, or whether a proposed course of action was in accordance with the Solvency II rules. I feel guilty because Stacy (although, amazingly still working full-time) was never able to get this level of distraction: on the contrary, she struggled to concentrate on work because kidney-related thoughts would refuse to be displaced.

On a slightly lighter note: the whole episode really brought out my inner geek. Not only was it fascinating listening to the doctors explain the science behind what was happening (kudos to the medical profession – they really are good at explaining technical stuff to the layman), but I also developed a bizarre interest in how the hospital worked. I really wanted to know things like how an SHO differed from a registrar, how was a sister different to a matron, what was the demarcation between the responsibilities of the consultant and those of the specialist anaemia nurse? I guess everyone needs a hobby!

Chronic kidney failure definitely affected our relationship, but the overall effect was actually very positive. After 4 years I reckon many couples start going on fewer dates, developing their own interests and generally spending less time together. We obviously ramped up the amount of time we had together by ourselves: 5 hours 3 times a week at dialysis for a start. When I start writing this down it looks as though this could have made us or broken us, but that is a thought that never occurred to us at the time. I loved those times maybe 2 or 3 hours into a dialysis session when Stacy would say to me something like “I was reading this article in the Guardian about XYZ, what do you think of this issue?” and before we knew where we were the machine was pinging to signal that the session was over. We probably had more in-depth discussions about society, politics, science and religion at the dialysis clinic than anywhere else.

The nurses normally refer to Stacy has my wife, and I’ve long since stopped bothering to correct them. It’s tempting to say that we’ve already fulfilled one-third of the marriage vows without ever saying the words. But I do not want to appear triumphalist here for a second: we have been immensely fortunate in so many ways to get through this – particularly with Stacy being a fundamentally strong person. I will not be issuing the challenge of “bring it on” to “for better or worse” or “for richer or poorer” – I just hope that fate can leave us alone for a bit!

Transplant Turmoil

I must start this post off with some incredible news… two weeks today, I will receive the most fantastic Christmas present I could ever wish for. My loving (and oh so patient) partner, Andy, will ‘share his spare’ – and donate his kidney to me on the 14th December! With just two weeks to go until the ‘big day’ or T day as it is known in our house… I just had so many thoughts and feelings around the transplant, that I had to write them here!

Firstly, the overwhelming feeling I have is one of gratitude. I feel so incredibly fortunate, to have somebody who is willing and able to give a kidney to me. That is a gift that not many people get – and I recognise it with every fibre of my being! I am absolutely incredulous that there is somebody in my life who is so selfless as to go through all of that, just to make my life better. I will never be able to repay such a gesture. Having that support during the diagnosis and dialysis has made it doable – and to top it off by giving me a kidney… I am just so speechless. With Christmas approaching, a conversation inevitably arose surrounding Christmas presents. As Andy sat and pondered what to get me – I sat, mouth agog – wondering how he could possibly be considering which perfume to buy me for Christmas, when he was giving me a kidney. I think he is good on the present front for the next fifty years!

Alongside these incredibly warm feelings of love and gratitude is the feeling of pure, cold fear. Fear for so many things surrounding transplant. Fear for Andy; fear for myself – and above all – a fear that it won’t work. I know, everybody tells me I just have to be positive – and I most definitely am. I have absolutely everything crossed! However, I would be lying if I did not admit that this is the scariest thing I have ever faced by a mile. I am the type of person who gets a fluttering feeling in my stomach, just going to the Doctors. So, the very idea that I can, voluntarily, walk into a hospital and have a transplant – and all that it entails – that is inconceivable to me at the moment. Indeed, there are times when I feel so overwhelmed by the prospect, that I think I won’t be able to go through with it. Then a voice somewhere in my head reminds me that I have no choice and that this is the best possible chance I’ve got. I try so very hard not to think about it – but it is absolutely all I can think about! It is with me twenty-four hours a day, seven days a week. I have continued work and kept myself busy, getting ready for the festive season. The tree has gone up; presents have been wrapped and even a few Christmas carols have been sung. However, when eating mince pies, decorating the house, or watching Christmas films – it is not visions of sugar plums dancing in my head! Instead it is visions of operating theatres, needles, drugs and nurses. I am just making a Christmas wish that it will all be worth it in the end – for both me and Andy… that’s all I want for Christmas this year.

Ever since diagnosis, I have had a very strong feeling of guilt surrounding the kidney failure and the transplant. Although, as far as I know, there is nothing I have done, nor could have done, to change the outcome – I can’t help but feel such a strong sense of guilt. I am so desperately sorry to put anybody, especially Andy, through any of this. At times, I consider that I am being so incredibly selfish in even letting Andy give me his kidney. Often I think I would be better to just wait on the ‘deceased donor’ list – and when it is my turn, a kidney will come up. After many discussions with Andy and friends about it – I am persuaded that we are doing the right thing – but I go back and forth a lot. It is definitely not something I am entering into lightly.

Having said that – I must say – I am going into transplant with a vast amount of hope and optimism. It feels like so long I have been ill and lacking in energy, I cannot conceive what it would be like to feel ‘normal’ again. To no longer be restrained by dialysis tubes and hospital visits. To be able to go to the gym, or dare I dream, go travelling again! To have a single day where kidneys were not at the front of my mind. To feel some sense of release and freedom from this nightmarish tableau. I am desperate to write a blog, telling you about life after kidney failure. Life beyond the dialysis machine. I desperately hope that my next entry will begin with the line… ‘the kidney is working; we are well and I have just had the greatest pee of my life!’

A Real Renal Rollercoaster

For quite some time now I have experienced so many emotions during this journey through kidney failure. Many times I noted to myself a particular thought or feeling – and reminded myself to write it down in the blog. However, these thoughts gathered in the tens, then hundreds, then thousands. Although this blog is long, it is hopefully not that long. I have tried to summarise the key thoughts here. They say a man thinks about sex every seven seconds – well, I reckon I think about kidneys just as much – if not more!

For those of you who are kind enough to read this blog regularly, you will have noticed a sizeable break between posts. This gap in timing is, in itself, very apropos to the subject of this blogpost. The level of emotion I have experienced on my “kidney failure journey” is incredible. It has encompassed everything from fear and excitement to hope and despair. My life has become one massive paradox and the emotions I have felt over the past nine months have definitely put me on a rollercoaster – up to and including that swooping sensation you feel in your stomach when you plummet from the top! As keen as I have been to write this post for quite some time – I have also been enjoying the sense of normality I have managed to regain over the past couple of months. I was reluctant to relinquish my new sense of freedom and enjoyment of all things ‘normal’ and to delve back into the world of ‘all things’. kidney. However, I have come to realise that you definitely can’t outrun your health – and although I was trying to be happy, healthy and normal – I need to face up to the fact that – whilst I am on dialysis – I am never truly any of those things. The kidney failure and dreams and fears of transplant are never – and I mean never – far from my mind. No matter what I do, or where I go, it comes too. The anxiety surrounding the situation was beginning to grab hold of me and so I turned to my best outlet – this blog.

Many people ask me “why do you write the blog?” and “Is it helpful?” I would say that it has been extremely helpful for me. On this page, I am able to order my thoughts and establish the feelings and emotions which really matter. If they are important, I write them here. If they are not, they are dumped from my mind for good! I am able to reach out to friends, family and the ‘kidney community’ through this blog. It definitely helps me – and I hope it helps at least one other person too.

Life has marched on and many things have happened as the blogposts have kept on coming. numerous things medical – and many things of the ordinary. Regardless of the event or situation, when your health is precarious, everything does take on a ‘soldier on’ element to it. With this in mind, the one question I, and many others I’m sure, have asked on a regular basis, is “should I even continue with any of this?” That, I realise, is a very difficult question to comprehend. I am basically asking, “do I want to continue living?” My ultimate conclusion is, ‘yes, I do want to continue’. I think anybody who has faced a difficult period in their life will ask themselves this question. It is a way of evaluating life as it is now and life as you would wish it to be. Establishing that life, as it is now, is so very far away from how you always hoped it would be, ultimately leads a person to ask the ‘continuation question’. However, for me, I have always been a dreamer and curious as a cat! My nose for ‘what is around the corner?’ has made me so determined to get my health back, if I can, because I want to know what else life has in store. Will there be places to travel in the future? Great shows to attend? More wonderful people I have yet to meet? I want to know the answers to all of these questions, and more. This keeps me going and encourages me to step beyond the difficult moments. Such thinking has also lead me to really enjoy the little joys in life. I have never had such fun carving pumpkins for Halloween, playing with sparklers on November 5th – and don’t even get me started on how excited I am that Christmas is just around the corner!

When I reflect back to my time of the diagnosis, I am still shocked to recall how strongly connected my physical health and my emotional wellbeing actually were. They became entangled with one another – and I had no idea how crucial it is for your physical health  – to keep your mind and emotional health healthy also. I walked into the hospital in March, not having any clue that there was something seriously wrong with me. I describe the moment I was told I had kidney failure as being a kin to being punched in the stomach and falling off of a cliff as a result. I mean this in the psychological sense, but also in the physical sense. There was a real physical sensation to being dealt such a emotional blow. From that moment on, my physical health went off of that cliff edge too – and I became so physically weak, that I could barely move. It was as though, by telling me that my kidneys had packed in and my body was failing me, this was the body’s confirmation that it needed, to finally give up the ghost, stop fighting – and shut itself down. The physical and the emotional became so intertwined that it was almost impossible to know what I was feeling. My anxiety level was so high, I could feel it – I could taste it in my mouth. I have never been so aware that anxiety, fear, anger etc – are all physical feelings, as well as psychological experiences. The emotions become so intense that it almost feels like an outer body experience. I imagine this is a coping mechanism cleverly employed by the body and mind when times are rough – to allow us to eventually detach and rebuild.

Even now, eight months and countless dialysis sessions later – it still feels like a dream. Like this is all happening to somebody else in the most intense movie I have ever seen – and all I can do is watch – keeping my fingers crossed, like I always do, for the happy ending!

One of my biggest fears following the diagnosis, was waking up on day one. Waking up with a few seconds of ignorant bliss, before I remembered exactly what is going on and feeling that ‘punched’ sensation. I needn’t have worried however, because when you have been diagnosed with kidney failure – it isn’t so easy to get to sleep anyway!

A lot of people have asked me if I felt angry, or a sense of injustice following the diagnosis and subsequent aftermath. I must admit that, before now, I would have expected to have felt all of those things and more. However, I genuinely didn’t. I can only imagine this is because I have always been a very practical person. I, eventually, dealt with the kidney failure, dialysis treatment etc, in the only way I knew how – that is, practically. I embraced the science and the routine and let it be a part of my daily life. I genuinely never had a moment of wishing it was happening to someone else instead of me, because I couldn’t wish it on anybody. I believe that life is a lottery – and although I am not happy with this particular spin on the roulette wheel – I recognise that things could be so much worse. I can still walk, talk and function. I have built myself back up to work and play – and for that – I consider myself to be very lucky indeed. I am not saying that I am ‘little miss sunshine’ all of the time – far from it. I have had my darker moments from time to time. Moments of jealousy – when I see somebody travelling and I wish it were me. I have had times of anger – when I meet people who absolutely skate through life. People who seem to have had every opportunity in life just handed to them, but have never really stopped to consider how fortunate they really are. I want to grab these people and shake them over and over again. However, then I rationalise that we never really know what goes on behind closed doors. Perhaps everybody has to struggle in life – one way or another.

Being diagnosed with kidney failure definitely affected my confidence on the whole. Firstly, because I had my eyes opened to the concept of my own mortality. I can no longer go on being one of these people skating through life. I have been well and truly exposed to the ‘not knowing what is around the corner’ factor – and that is one big bucket of ice water! Secondly, I was so worried that I have now become ‘that girl with kidney failure’. A ‘sick person’ who must be treated with kid gloves. I have been so worried that I would be treated differently by friends – or I would no longer be invited to nights out, or theatre trips. This certainly did happen to a larger extent during the beginning few months. However, I found that the more I put myself out there, the less isolated I became. This in itself wasn’t easy – as I put myself under too much pressure not to be a ‘sick person’, to just be me. As it turns out, just ‘being me’, takes a lot of work!

Being on dialysis naturally comes with it’s own emotional challenges. Although I am a lot more used to the process now – I do still sometimes of ‘oh my gosh!’ type moments. Moments where I look at the tubes snaking in and out of my body – and I wonder – how did I get stuck in this nightmare?! I remember seeing some medical drama when I was a kid. An episode where someone was attached to a dialysis machine and I remember the horror and fear that this filled me with. It seemed at the time to be one of the worst things that could ever happen. I now know that dialysis – although it is not fun – it is by no means the worst thing that could happen. However, with that being said – I have no desire to continue doing it!

Dialysis is very rough on any person – both emotionally and physically. Being pinned down, three times a week, by transparent tubes can feel rather claustrophobic at times.

The most difficult part to explain re dialysis is – what I like to call – the ‘dialysis dip’. This is the very sudden drop in mood experienced whilst undergoing dialysis treatment. I can only describe this as a purely chemical response to what the body is going through. For me, I can be sitting, having dialysis treatment and feeling fine. Then, without rhyme nor reason, I get a sinking feeling in my stomach and a feeling of anxiety and worry just washes over me. It is not in response to a situation, story or anything I am doing at the time. It happens about three hours into the dialysis sessions and hits me as suddenly as a slap! When I am not on dialysis, I can feel okay about the idea of transplant. Then, I can have moments on dialysis where everything feels hopeless. Such a dark cloud sneaks over me towards the end and in those moments, I feel so freaked out by everything, that I would refuse a transplant if they offered it! When I used to dialyse in the morning, this horrible feeling would follow me round for the rest of the day. That was by far the worst bit about having dialysis treatment. However, I have since switched to an evening dialysis slot – the best thing I have ever done! I can dialyse, feel weird, come home and sleep… done! Then I wake up the next morning and I feel fine. It means that my ‘rock and roll’ Saturday nights involves me, some nurses and a dialysis machine – but it is a worthwhile compromise!

Having the tubes in my body does sometimes make me feel like a transformer toy! However, on the whole, I am not as bothered by them as I would have imagined. I see them in a very practical way also – and as long as I can think of them as temporary (fingers always crossed for transplant) then I can handle them being there. The thing that was difficult was the way a couple of my friends reacted to them. I remember the first time I went out anywhere, following my diagnosis. I had gone for a lovely lunch with a couple of friends. The lunch went well and we were leaving and having our customary goodbye hugs. One of my friends became squeamish and said that he didn’t want to hug me, because knowing that the tubes were there really freaked him out. I have never felt so weird and more like a freak in my whole life. Perhaps he was being dramatic – but it was the last thing I needed – and I always think about that now whenever I meet or greet anybody with a hug. Upon reflection, I should have gone the whole nine yards and whipped them out!

Kidney failure and dialysis have had their ups and downs and twists and turns, but none of that compared to how I feel about the pending potential transplant…

Dialysis Diaries Part 2 – What does it feel like?

Whenever I tell anybody that I am receiving dialysis treatment, it becomes apparent very quickly that there is one question that they are dying to ask. Some will ask and some will hesitate for fear of being intrusive. The question is ‘what does it feel like?’

This is a good question and definitely one I would ask if the roles were reversed. There is no uniform answer to this, because everybody will have a different experience and this experience will vary depending on a host of other factors, such as age and other existing health conditions. I am young and reasonably healthy – if you exclude the whole kidney failure thing! From vast amounts of reading, I do know that the symptoms and side-effects of dialysis are felt and experienced by many people. I can also say that, despite how awful it sounds at times, I am more than fully aware that it could be much worse for me – as it sadly is for many others.

As my blood gets sucked from my body, made squeaky clean and put back in again, nobody is more surprised than me to discover that you cannot feel a thing when this happens. I feel no pain or discomfort, no movement or sensation of any kind, when the machine and my blood do their thing. I thought I would feel a sucking sensation, or the feeling I was being inflated when the blood goes back in – but, when it first starts, if it weren’t for the bright red rivers running through the transparent tubes, I wouldn’t know anything was going on at all. This is a definite plus… unfortunately, my body is much more observant than I am and it soon becomes overly aware that it is being interfered with!

My body has spent the past five months battling with me… insisting each time I ‘hook up’ that it does not want to have its blood etc interfered with. However, I am a glutton for punishment – and have kept returning for a thorough scrub out – three times a week. Over time, my body seems to have accepted that this is how things will be for the foreseeable future and has finally relented on me somewhat!

Exactly twenty minutes into the dialysis process, I begin to feel extremely peculiar indeed. My breathing becomes difficult and I get incredibly warm and nauseated. I recognise that this does not sound particularly pleasant – to put it mildly – but I am unbelievably grateful that that is all I have to say happens to me now, because it used to be a lot worse.

I must point out, for anybody reading this who is anxious about starting dialysis, my experiences are not necessarily the norm – and there are solutions – which I detail here. Solutions that took me months to resolve so hopefully this will spare you the legwork!

When I first started dialysis treatment, I had a whole host of unbelievably horrible experiences whilst on the machine. The absolute worst experience I have had *many times* is a sudden and severe drop in blood pressure. This drop comes with dizziness, sweating, vomiting, cramping, extreme breathlessness and a strong feeling that fainting is imminent. I can only imagine it is a kin to drowning, or the feeling of suffocation. This was a horrible experience that saw me with an oxygen tube up my nose from time to time, which I did not relish because it is actually extremely cold to receive air that way! After what felt like a long time of fiddling with different settings on the machine, it was established that my body likes to be gently introduced to things. My fluid goal, the level of water pulled off my body, must be set to zero for the first sixty minutes exactly. The pump speed, the rate at which my blood is pulled from my body, must be set as low as possible, without fear of clotting. It is set to a speed of 150ml per minute *the norm being 350* and is left like that for exactly one hour, before it can be increased. The higher the pump speed, the cleaner my blood gets, so it is good to get it as high as possible, for as long as possible. After exactly one hour, my body seems to relent and the pump speed and fluid goal can be racked up as little or as much as the nurses think is best. Anything before that hour and my body will crash and it will be time for that cardboard sick bowl again! Oh how I have grown to hate the mere presence of that bowl and what it represents!

The fact that my circumstance on dialysis meant that the machine had to be set with specific settings at specific times introduced another host of interesting problems and frustrations. I am unable to read the machine settings, which is in itself, not a problem; after all that is what the highly trained and qualified nurses are there for. Where it becomes a problem is when the nurse sneaks up behind me, says nothing – and turns my pump speed up without telling me. If they do this within the hour, then my blood pressure drops and it is time for that sick bowl again! I know the staff are rushing around and cannot be expected to remember every setting for every patient, but that is why communication is so incredibly important. Simply asking me, or telling me that they are altering the machine, would give me the opportunity to tell them what I need in the first hour and allow me to avoid having the crashes.

There were a few other ongoing symptoms that I experienced regularly when I first started dialysis treatment, including headaches, nausea and vomiting. The vomiting *which was so embarrassing in the public ward* led me to a rather interesting discovery with hilarious consequences. After many weeks of vomiting whilst on the machine, we decided to try giving me an anti-sickness medication called Cyclizine. I have taken cyclizine orally before and it seemed to do the trick. The nurses decided that it would be quicker and more affective to give me the drug intravenously, so put it into my line, to send it directly into my bloodstream. So, I sat back, waited to see if it would work and continued my conversation with the nurse. After an incredibly short amount of time, I stopped mid conversation, looked at the nurse with wide eyes and began exclaiming “hey, hey, what is going on?” Nurse, “Stacy?” Me, “I am so drunk!” *queue fit of giggling*. Nurse, “Oh, I think you are having an bad reaction to the Cyclizine.” Me, “No, it is not bad at all! It is great! I think everybody should have dialysis all the time!” I can honestly say I have never been that high… or embarrased! I am no longer permitted to have any Cyclizine, but I will always have the memories!

I cannot say it is fun to have kidney failure and all that it involves! However, alongside the difficulties, there were also many positive aspects of kidney failure and the whole dialysis process. The doctors told me – and they were right – that dialysis treatment would enable me to realise how unwell I had actually been feeling. So many symptoms that I put down to tiredness, commuting into London, or no longer being in my twenties! It suddenly all makes sense and I feel ridiculous for not knowing there was anything wrong. Being exhausted when walking up a flight of stairs; eating bucketfuls of ice every day; or taking power naps in the toilet at work, because I was so very tired – I could excuse all of it away at the time. Now I know what was wrong and I am getting stronger every day and am so excited and hopeful for the potential transplant which will ignite the touch paper under the sparkle I already have for life.

I have also established and strengthened many relationships over the past five months. Communication and building networks of support is – in my view – is paramount when going through any kind of medical crisis. A simple short text asking how I am really does make the world of difference to me. I have had amazing support through all of this and hope I will continue to do so. It has genuinely made me see the true value in the people close to me. Establishing stronger and better relationships with people has been very much at the centre of this experience, with family, friends and the medical staff. I know and respect most highly all of the dialysis staff. I know their names, their backgrounds and what they will have for dinner that night! That personal side and the fact that they are also good fun – makes the whole process a million times easier; for which, I cannot thank them enough. This is also true of anybody – and you know who you are – that has thought of me, or been in touch with me in the last few months. In fact, if you are even reading this blog, then I think you are truly awesome for taking the time to do so!

The dialysis got easier in time and I am so grateful that it is there *though I hope to replace it with a working kidney* The headaches went away by taking Anadin Extra and the vomiting ceases for the most part when I lie on my right-hand-side, with my head slightly elevated. So, now all I have to contend with is the extreme boredom! As a result, I am reading a lot more, which is great – and I have discovered Twitter – though I am not sure if that is a good thing or not! So, if you ever want to entertain me, shout me @mydarnkidneys

Dialysis Diaries

I am often asked about my recent experience of dialysis treatment “what does it involve?”, “how does it work?” and “what does it feel like?” I must say that, despite the shocking nature of the situation, I can’t help but be absolutely captivated and fascinated by how it all works. I never tire of learning about dialysis, medicine and how the body functions. I cannot believe that I am so intrigued by something I gave next to no thought about until now. I could never have imagined that I would know exactly how it feels to have low blood pressure, an elevated phosphate count, or off-the-chart creatinine levels. Having this never-ending thirst for knowledge has been a true gift during all of this. It has kept my mind focussed on the pragmatic and practical aspects and has allowed me some sense of control throughout the dialysis days! I cannot recall being at all anxious regarding the impedance of my first dialysis session; though I must have been! I can only imagine this is because I was still reeling and rung-out from having the access line inserted that I perhaps had no space left to contemplate the mammoth event of dialysis which lay before me.

Part i – how does it work?


IMG_0234 (1)The first session soon arrived and I was instantly intrigued by the sheer genius of such an invention. I will attempt to describe, first the procedure and how it works and then, how I felt whilst having it. There are several types of dialysis treatment, peritoneal dialysis *line in stomach*, haemodialysis through a fistula in the arm, or haemodialysis through a line in the neck – which is the treatment I currently receive. Two tubes connect me to the dialysis machine and to ‘hook up’ a process of cleaning and connecting must first commence. Firstly, the protective caps on my access tubes are removed, the ends are cleaned thoroughly with an alcohol wipe, a syringe is attached to the ends, the clamps on the line are opened and a syringe-full of blood is drawn out, which is then discarded. Saline solution is pumped into my line, to clean the inside and the tubes from the dialysis machine are screwed into my line. The machine then sucks my blood out of my body, through my line and into the tubes in the dialysis machine. The dialysis machine is essentially a massive pump. In the centre, a plastic tube is curled round in a loop. Inside this loop is a spinning rotor that digs in slightly to the plastic tubing: as it rotates, it pushes the blood through the tube. The blood then passes through some sort of filter – which I think is to catch blood clots – and then enters the bottom of the dialyser column. The dialyser is a relatively small bit of the machine, but it is where the action happens! Inside this column is some sort of micro porous filter. through which the toxins in my blood can pass, but my blood cells cannot. The dialyser is constantly flushed with water, and this carries away the toxins after they have passed through the filter. Once the – newly cleaned – blood exits out of the top of the dialyser column, it passes down a final plastic tube into the other side of my line and back into my body. The plastic tube in the dialysis machine has a side arm in which more Saline can be added, which is used to flush the remainder of my blood back into my body at the end of the session. There is a second side arm where heparin can be added to the blood to stop it clotting. The speed at which the rotor spins can be adjusted using the touch screen at the top of the dialysis machine. This adjusts the speed at which my blood completes its circuits. The faster the machine pumps, the more times the blood passes through the filter during the session and the more toxins are removed. However, if the blood is sucked out too quickly, it can cause you to feel extremely weird – to put it mildly. In the extreme, it can cause a dramatic drop in blood pressure (basically, the blood doesn’t have enough time in the body to do useful things – like deliver oxygen to the brain – before it gets sucked out again and told to go round the dialysis machine!)

If the kidneys are not performing their customary duties and removing fluid from the body, the Dialysis machine must step up for this task also. For this, the machine has the ability to take some water out of the blood. Unlike say, urea, where you want to get rid of all of it, you want to keep some of your water to avoid turning into a prune. However, every dialysis patient needs to lose some water each session to avoid a rise in blood pressure. So, the more you drink between sessions, the more fluid must be pulled off – and the more fluid that is pulled off, the more taxing this is on the body. The nurse can simply programme an amount of fluid to extract during the session and the machine gets on and does it – I have no idea how this works, but it is very clever!

There’s a myriad of other settings on the machine: they can change the temperature of my blood if I get too hot or cold; they can set a pressure range for my blood where the machine will stop -and an alarm go off – if the pressure in the tubes is too high or too low (typically because I’ve rolled over and am lying on the tubes!); and they can make it monitor my blood pressure through a cuff attached to the machine.

The entire dialysis process takes between four and five hours (including clean up and clean down!) Whether the experience is good or bad, very much depends on the circumstance of the individual. Dialysis is a very complex process and affects everyone differently – and I can only relay my own experience, which I will do in part ii…