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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The First 24-hours Are Crucial

… As the Consultant and his band of doctors took their leave, the sound of the metal ring on the curtain rod, sliding back into position seemed so incredibly loud to me in that instant. Sitting on my hospital bed, in the middle of the ward, I was aware of bright lights, a buzzing in my head and my heart pounding through my body… was that the anaemia, anxiety, or a combination of both? As “You have end-stage kidney failure” reverberated around my buzzing consciousness, I became faintly aware of my surroundings. I was aware that my partner, Andy, was crying – and that I was not. I felt like I was falling over a precipice – and there was no room for tears, only a strange sort of paralysis.

As the falling feeling subsided, I became aware of all the sights and sounds around me. The bright lights, the hospital smell and the sound of all the other patients. I became aware that the woman beyond the curtain to my right was shouting – what she shouted chilled me, terrified me and filled me with sadness. “Nurse, I just want to die” became this poor woman’s cry for the next x number of hours. I was exactly the opposite at that moment, “Nurse, I DO NOT want to die!”

The rest of that night/morning reveals itself to me in a kind of haze. My medical condition deteriorated drastically over the course of a few hours, following the diagnosis – and I do not know if that was purely medical, or if the anxiety I felt contributed. I recall going to the bathroom, no more than twenty steps – and collapsing in a heap on the floor; sick, weak and unable to get back to my bed without a compliment of staff to gently drag me there. The next few hours passed by in a haze and I cannot remember the thoughts that went through my mind, or the conversations between me and Andy – that is probably a good thing, a thank you to my subconscious for keeping those memories to itself!

In the wee hours of the morning, I was told that a porter would be along to move me to a private room on one of the renal wards – a switch for which I will be eternally ever grateful. I knew that porters are extremely busy people, running from one part of a hospital to the next, but I had no idea, until that point, quite how fast they move! I was secured under my blanket and zipped along the corridor to my room. I had always fancied, one day, taking a ride and feeling the “need for speed” in a Ferrari or Bugatti Chiron – so imagine my surprise when that dream was realised in the corridors of a South London hospital!

Monday slid passed as I waited for someone to come and talk to me about my dialysis options going forward… but nobody came. Until Tuesday morning that is, when a nurse walked in and said “Stacy, it is time for us to put a line in your neck”. As I am sure you can imagine, this was not something I was ready to joyfully jump to and get on with doing, mainly because I had had absolutely no warning or information and had no idea what she was talking about. When I articulated this, she seemed surprised that nobody had explained my options to me and proceeded to hand me a booklet which would apparently tell me everything I needed to know. As I mentioned above, I have a visual impairment, which doesn’t have as many challenges as you may think. However, it does present me with a bit of a challenge when I am handed a booklet, which may as well be entitled “life changing decisions – everything you need to know” which I am then unable to read! I requested the booklet in electronic format – a suggestion which was greeted with confusion and a claim that it did not exist. I still do not know if this is true, but if so, this is a massive and unnecessary barrier for all patients and their families with any form of print disability – though I hate that term! I was told that as I had not reviewed my options then they could not go ahead at that time and insert the line into my neck… “fine by me” I thought! Sometime later the head Junior Doctor came to see me and explained my different Dialysis options. This was so new and overwhelming to me and there was so much I did not know. So, I was naturally asking the doctor as many questions as I could. She became impatient with me and said, roughly half an hour into the conversation “okay, you can ask me just one more question.” I began to panic, wondering which one of the hundreds of questions in my head was the most important! I was advised that having a line inserted into my neck would be the safest option, as I was not well enough to undergo the general anaesthetic necessary to put a line into my stomach. At the time, both options sounded absolutely horrendous and terrifying and I was back and forth on whether or not I even wanted to go ahead at that point…

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…