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..

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Published by

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

One thought on “Now see here!”

  1. Hello Stacy, I’m so sorry to hear your journey in the NHS is not as positive as it should be, I posted on your Facebook page and have now found your blog, as a nurse and a patient with renal disease and hearing loss, I have been on both sides and have some appreciation of how frustrating it is being told different things by different people. Being spoken to, through your husband is inexcusable, I feel embarrassed on behalf of the people who are doing this. I have often found that mixed messages are down to problems with team communication, find your key person to speak to, usually the consultant or the registrar, your allocated nurse or person in charge are the best people to ask in that order. Speak up and say how you are feeling, give them a chance to put it right for you and don’t forget you can say no to all these questions from random people. I am wishing you a much more positive experience and hope the tube in your neck is now helping you feel better, take good care, things can be better, my best wishes to you and your husband. Helen

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