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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mykidneyfailurejourney

Thanks so much for reading. I never know what to write in these things. I am 30, Scottish, living in London and going through a rollercoaster time of sudden kidney failure, dialysis - and hopefully a transplant some day. I set up this blog to share experiences of all things kidney. I hope this blog will continue to have a glimmer of positivity through the darker moments and that such positivity can help others too. It has helped me so much to write this blog and I thank you immensely for taking the time to read it. . Please join me on Twitter: https://twitter.com/mydarnkidneys

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