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!

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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!’

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…

Now see here!

As I lay in my hospital bed, trying desperately not to think about what lay ahead I became so in tuned to everything around me. My body and my mind were on high alert for any change in noise or environment. If I were a stunt man *or woman* then this level of awareness would have been incredibly helpful. However, in a hospital, where there is always something going on, it was not helpful – in fact, it sent my anxiety levels through the roof. I can never fully explain how it feels to be lying there, wound up as tightly as a bowstring, anticipating the next shout, door slam or buzzing alarm. As the type of person who jumps when the microwave pings, you can imagine how completely exhausting it was, just lying there, but constantly nervously anticipating the next sound in a hospital ward crowded with busy people. This anxiety was not helped by the relentless surprises they liked to provide me with on a daily basis. From “Stacy, we’re going to put a line in your neck” to taking my blood pressure every four hours, 6pm, 10pm, 2am! I am not complaining of course, I cannot carp that they were being too vigilant with my healthcare – and I didn’t really wake up when they took my blood pressure at 2am – I simply groggily raised an arm and carried on snuffling in my sleep! I must confess to having a rather embarrassingly childish moment at eleven o’clock on Wednesday evening. Extremely hyped up and having an absolute terror of injections, you can imagine my reaction when, as I was drifting off to sleep, a nurse walks in to my room carrying a syringe “time for your injection Stacy.” I leapt a foot in the air, scrambled away and promptly fell off the bed. The tableau of me laying on the floor, my partner Andy trying to help me up and the nurse standing there, stunned, and with a needle in her hand is quite comical now I think back on it – though not so much at the time! I never had the injection – the nurse just left – and I still to this day have no idea what it was for – it might have been great!

As I had not been told anything regarding my dialysis options, the original session was postponed and I had to wait three days before I could have the line inserted on the Thursday. This was not something I was looking forward to, but the wait felt interminable for two reasons. Firstly, because I was petrified beyond words re having the line inserted and I am very much one of these people that prefers a plaster to be taken off quickly! Even with the kidney failure, I would rather have been told it is happening to you now, than it will happen to you in the future. My kidneys were giving up on me and I still went travelling, skydiving and caving – none of which I would have done if I had known. The second reason I did not want to wait three days for the line to be inserted is because I was told by the doctor, if I did not go on dialysis, I would not live more than a few days. So, when I was told I had to wait a few days to have the line inserted, to say I was worried and anxious wouldn’t do the situation justice. However, as I did have to wait, there were rather a few interactions with the staff which were so utterly bizarre, it actually took my mind off what was coming re the insertion of the line.

As you lovely regular readers will know, I have a visual impairment, which I have always had – so it is part of me – and really not a big deal. I do everything you do and it really does not slow me down at all. It is as natural to me as the shape of my body, or colour of my hair. I have never had any issue talking about, or answering the multitude of questions I get about it on a daily basis. It is almost like being famous for something, except it doesn’t generate any revenue what so ever! So, it has never been a problem to me, except when I was in the renal ward of the hospital. I have never felt like such an exhibition, as I did when I was on that ward. Endless streams of nurses, doctors and health care assistants would come by my room to ask me… not about the kidney failure, the reason I was there after all, but about what it’s like to have a visual impairment. I had absolutely no energy to answer their questions, or to feel like I was in a zoo and had no mental capacity to deal with the kidney failure situation, because I was fielding questions left, right and centre, regarding the visual impairment thing. The directness and sheer rudeness of the questions and general comments bothered me immensely, “how long have you been this way with your vision?” “is that what’s wrong with your kidneys?” – I don’t even understand that one. “I assume you have never worked” – I have a degree and have always worked. My favourite – directed at my partner Andy “I assume you are her carer”. The very idea of a visually impaired person having an intimate relationship with another person was more difficult to deal with than the concept that I need to travel 24/7 with a person to look after me. Andy was amazing and slept on an air mattress by my bedside the whole time I was there and they still thought he was my carer. Now, I know that people who care for others are incredibly hard-working and dedicated people, but sleeping on a mattress beside my bed – well that takes it to a whole new level! I am so incredibly used to this level of unawareness in society, but I shrug it off and move on. However, I felt trapped in my hospital bed and this constant bombardment with these kind of comments was one of the absolute worst aspects of being stuck on that ward. Never looking at me, speaking to me through Andy “how does Stacy feel today?” and “does she want anything to eat?” became like ropes snaking round me, strangling me, every time a staff member entered my room. I felt like a freak and nobody – in any circumstance – should ever be made to feel like that, simply because they experience life differently from another person. If I had my way, this would be an integral part of the training that every healthcare professional receives.

The strange questions kept coming, but time moved on slowly and Thursday finally arrived; with my line to be inserted that morning. I felt sick with apprehension, but was encouraged by the head nurse to eat something for breakfast. I dutifully obliged and forced down a piece of toast. An hour later, I was waiting to be taken for the line insertion procedure, when one of the doctors came in and told me that I could no longer have the procedure, because I had had something to eat. I was told that they would try and fit it in later that day, but they were unsure whether or not they would be able to fit me in. If they could not, then it would have to be Tuesday! So, I waited, feeling so incredibly worked up and scared and not knowing if it was even going to happen that day or not, but it did eventually happen; close to five o’clock that afternoon, they came for me..

Kidney Failure, Dialysis, The NHS and Me

As a 30-year-old woman, visually impaired and living in London, with a recent diagnosis of end-stage kidney failure –, it leaves me with far too many tales to tell – to simply keep them all to myself! Some scary – some hysterical, so here goes nothing…! I have never been much of a writer. Putting my thoughts to paper, or in this case, a laptop keyboard – does not come naturally to me. So to do so for the first time when writing about what is *hopefully* the most difficult time of my life, poses a number of interesting challenges. I write this ‘blog’ I think they call it – for two reasons. Firstly, because I spend way too much time thinking about my kidneys (a sentence I NEVER thought I’d say!) and need a braindump! Secondly, I am hoping that my experiences can let others know that someone else is going through this as well – something I find difficult to remember at times. I will take any willing reader with me on my rollercoaster kidney failure journey, over a series of these entries. Detailing everything from Dialysis and disability debacles; to transplant terrors and beyond! To take ‘you’, the reader with me on this journey may make it feel half as long and far less daunting! I hope to provide an entertaining and informative look at all aspects of the life of a kidney disease patient. As awful as having kidney failure may sound – and it often is – I would like to think I can find the positive in any situation and I hope some of that positivity and humour shine through the darker moments.

That Fateful Sunday

March 13th was a better than average Sunday. The sun was out and the weather warm for the first time in a long time – finally, spring was in the air! I had needed my hair cut for some time and my local hairdresser had agreed to open up for me. A bit of a local Samaritan, she often regaled me with tails of her lending friends or neighbours a helping hand. She talked of many people with a vast range of disabilities – and I can so strongly recall, sitting there, listening to her versus the sound of the scissors – and thinking to myself how grateful I felt not to have any of these health issues she was
recounting – and how lucky I felt to be in such a good medical condition. A persistent cough, coupled with difficulty breathing had plagued me for a few days, but I wasn’t too worried about that – because after all, there’s always something going round! After a few hours shopping and tea with friends – it was getting late and time to head home… a very lovely day was had overall. I noted that even as the hours passed, my difficulty in breathing was becoming worse *it being necessary for me to sit down with exhaustion and shortness of breath every twenty seconds*. After learning that there wasn’t a slot with my GP for three weeks, I decided to phone 111 for advice. Upon hearing that the problem was in my chest, they insisted that they should send round a paramedic to my home, to check me over. I reluctantly agreed and hung up the phone. I felt extremely embarrassed that the neighbours were going to see an ambulance outside of my home and that such a fuss was being made over – what I considered to be – a chest infection. The 111 service was incredible and I had a paramedic in my livingroom in less than five minutes… no mean feat in London traffic… even on a Sunday night. He was jovial and none-too-concerned re my symptoms – until he took my blood pressure. Establishing that it was very high for someone of my age *181 over 130* he decided to take me to A&E – as a precautionary measure. The next bit, though necessary, is difficult to write. Remembering how a nice, sunny Sunday turned into a Sunday from my nightmares. Having previously being so terrified of anything medicine-related, I was extremely anxious to be in a hospital and not entirely co-operative. Having a terrible phobia of needles, I point-blank refused to let them take blood from my arm. After much persuasion I relented – and thank the stars I did, because those blood results would tell a thousand tales which would change my life forever. An on the spot blood check told the medical staff that I was extremely anaemic and had a Haemoglobin of 59 *the average being around 115*. A cannula was inserted and the blood was sent to the lab to be analysed immediately. At this point I was told that I would probably need a blood transfusion straight away. “Blood transfusion?” that seemed like a very serious and terrifying prospect and something I had only ever heard of from medical dramas – it couldn’t be happening to me… not in ‘real’ life! I was sent for a chest x-ray, whilst waiting on the blood results to come back. I was standing in the queue for the x-ray, when a Doctor ran up to me with a paper in his hand. He told me that they needed to move me quickly to a place where they could “keep me safe”. I was then hurried to the resuss department – among car crash victims – the smell of blood was heavy in the air – and this is when I began to get really scared. I was told that the results of the blood test showed a creatinine level of over 2000 *the norm lying between 70 and 100* I had no idea what this meant – only that it was something to do with the kidneys. A subsequent ultrasound would reveal my kidneys to be almost non-existent – shrunken and damaged. Even at this point, it did not occur to me that perhaps I had kidney failure. After all, that kind of thing happens to someone else – and for sure I would have known if my kidneys were in such a bad state! What happened next is probably the strangest thing I have yet ever experienced. In order to monitor my fluid output, they told me it would be necessary to fit me with a catheter *cringe!* It must have been apparent that I was in a bit of distress by this point, because the very helpful nurse decided that she was going to demonstrate those multitasking skills that women are so well-known for, attempting to insert a catheter in my body, whilst at the same time – attempting to make me laugh *to be fair, that was never going to happen no matter what she did!* She began working away in my most intimate of intimate places and said “do not worry… I am just a hobbit from Lord of the Rings, going on a quest!” Well, it certainly beats “do you come here often?” I suppose! Some hours later, around 3a.m Monday, I was on the renal ward, listening to the sound of many voices and the sound of even more beeping alarms when a Scottish Doctor complete with a full complement of medical staff, stepped through my curtain. “Stacy, I am Doctor… I have had a look at all your tests. You have end-stage kidney failure. Your kidneys are functioning at 2% and there is nothing we can do.” I will never be able to fully describe what I felt at that moment. Only that it must be comparable to being punched in the stomach, then falling off a cliff as a result. I would have given anything for that Doctor to have taken me and my partner to the side, out of earshot of the whole ward – and to have broken the news to me in a very different way. Before he clarified the way forward, there was a stretch of time *probably seconds, but felt like a lifetime* when I genuinely thought he was telling me that there was nothing they could do to save my life. He began detailing my Dialysis options, Peritoneal (stomach) versus Haemodialysis (chest) – but I could not take anything in at this point. I was told that a Dialysis nurse would see me after I  had time for the news to sink in *I’m not sure it has yet!*. They disappeared back behind the curtain and my partner and I were left in stunned silence, with the sounds of the hospital all around us…