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!

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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…

Lining Up

After an interminable period of nervously waiting, Thursday was
finally upon me – the day I would have my line inserted. I still did not, at that point, fully understand the full ramifications of what was about to happen. All I could think about was the impending procedure and what it represented… the physical confirmation and constant reminder that I was now a ‘sick person’. 

I knew the line insertion was a procedure, but I was not aware of the details. I knew it involved the insertion of tubes, to allow me to have Dialysis, but again, I did not really know, or comprehend what that really meant. I spent that Thursday getting more and more upset and worked up and – to be honest – just plain terrified. 

When they finally came for me, I am not ashamed to say, I was a bit of a mess! They wheeled me through to the procedure room. A room which was so incredibly clinical, that it only served in making my anxiety ten times worse. Now, I know it is a hospital, so what could I expect, but a wee bit of music in the background – anything to make it feel more normal – would have been so welcome. As they put me in position and hooked me up to the monitors, I could hear the constant bleeping of the machine, telling me that my heart rate was racing like the beat of the most energetic song ever! 

I was laid flat on my back, looking up to the lights above, with my hands by my sides. A doctor, a nurse, a healthcare assistant and Andy were all present. Through everything, having Andy’s calming presence there; holding my hand and just generally being lovely, has been such a strength – I can’t even describe how lucky I feel. So, when they asked him to leave the procedure room, the panic really set in – and I have never felt so alone and so very afraid in all my life… and I have done some scary things in life! I could not stop the tears from flowing, the hyperventilation, or the feeling like my heart would burst through my chest. 

I understood that, generally, such a procedure would be performed using a decent amount of sedation, to ensure a feeling of mild amusement with everything! However, they were unwilling to give me more than the tiniest amount, for fear of health consequences at the time. To be fair, that level of euphoria, or even detachment, would have taken an awful lot of sedation! They setup their equipment and got ready to begin. 

The next part is one of the most difficult things I have ever had to do in living memory. I had to give verbal consent for them to proceed with inserting the line. I was in such a panic I could barely speak. “Stacy, you need to say yes, you want us to put the line in” I couldn’t “Stacy, you need to tell us to go ahead – it has to be your choice” but it would never have been my choice. Stuck in a battle between knowing that I needed this procedure and desperately wishing I was anywhere else, anyone else… meant it was almost impossible for me to consent to giving them the go-ahead. I don’t remember if I ever actually articulated the word ‘yes’ – but I assume I did, because they continued. 

A sheet of plastic was placed over my face and right-hand-side of my body – a template of veins etc I guess. The local anaesthetic injections stung, but the thought was worse. I could feel the tubes going in and being pulled through, but it wasn’t painful. I could hear the sound of the tubes snaking against the plastic – a sound I will never forget. The most painful part of the procedure was the awkward position I was lying in, which put immense pressure on my back. However, this did take my mind off of the procedure! 

Two tubes were attached to my jugular; snaked down my chest and exited through my right breast. I think this is particularly difficult for a female for obvious reasons. Certainly for me, vanity seems to always trump; when, even in the hospital, I was worried about my hair. When the tubes were in, I was stitched up, the area was dressed over and I was sent back to my little oasis on the ward. 

The area was stiff and a little soar afterwards, but the psychological wound would take longer to heal. I have had that line in for three months now and I can honestly say; I would do it all again. The line, though not my most flattering feature, means I am able to have Dialysis; receive iron and have many blood tests – all without feeling even the tiniest modicum of pain or discomfort. I wish somebody had told me all of this, before I had the line put in, then I honestly don’t think I would have felt half as terrified or upset with the situation. I now realise that the line is only temporary; is just part of my treatment and the existence of it in my chest, serves only as a reminder of the marvels of modern medicine.