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

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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…