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…

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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

22 thoughts on “Kidney Failure, Dialysis, The NHS and Me”

  1. Dear Stacy. I thought it was only the Lancastrians who call a spade a shovel….! Wow.

    Perhaps it is just easier to concentrate on the appalling bedside manner of your compatriot Dr than the shocking news you relate of your kidney failure. It’s almost too difficult to take in. Thankfully, your incredible sense of humour has not failed you and despite your writing having the energy of a horror story/thriller you still managed to make me laugh.

    It would be lovely to catch up although I don’t know where you are living these days. Wandsworth??? If you are up to a visitor, do let me know.

    I am sure writing this blog cannot be easy but, rest assured about your writing – you write beautifully.

    Of course, I am eager to know what is happening for you now and how you are.

    Sending much love for now Stacy, and to echo Guy’s offer, do let me know if there is anything I can do.

    John xx

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    1. Dear John, how very lovely to hear from you – I really hope you are well. Thank you so much for taking the time to have a read – and for your very lovely comments. It really is a shocking time – but there are many good things to be found – and I will keep trying to find them as long as I can! It would be wonderful to see you whenever you are free. I live in lower Morden – near Wimbledon. Do please drop me a text to arrange if ever it is convenient for you. Do you still have my number?
      Really hoping all is great with you! XXX

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  2. Dear States I will follow your blog. I was admin in a renal outpatients clinic. I met my husband who was a patient and had a transplant 16 years ago. Unfortunately our 3 daughter’s and his eldest daughter have inherited his renal disease. So I hope that my girl’s never have renal failure as quick and as unknown as you. Your writing is amazing and I look forward to reading more x

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    1. Thank you so much Tricia for your lovely response. Until now – it was inconceivable to me that this could happen to anybody – let alone children. I will forever keep my fingers crossed that your lovely children never need to go through anything with their kidneys. At least you know exactly what to watch out for – and you will be the best support they could ever have – God forbid they should ever require it. X

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  3. Stacy when are you doing your next piece? My partner has total kidney failure and has been on dialysis for 8 years. Reading this has made me 1, remember we aren’t the only ones going through it and 2, made me even more determined to grt more people talking about their kidneys, more people on the donor list and more people fundraising to help cure the awful conditions that cause failure. Your an inspiration! Keep blogging…. I for one am with you every step of the way now.

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    1. Thank you so much Lucy! I couldn’t agree more – we need to really raise awareness of everything kidney! Sorry to hear your husband is going through Dialysis. I am so delighted you will follow my blog. I should be updating it tonight. I am always more than happy to chat about all things kidney with you! 🙂

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  4. Stacy, we found your article so well written and interesting. Keep us informed if you can. We wish you the best always and God bless you. Lea and Mark Xx

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  5. Dear Stacy,
    I relived my nightmare reading your experience. My brother and my family went through the same shock 1 year ago on discovering his renal failure.
    I know each word came from your heart and must have been extremely difficult to put out there as well. I applaud your courage and send my prayers and best wishes to you.
    Do keep sharing and reaching out. Together we can be each other’s support through this.

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  6. Hi Stacy

    I have been through the same as you did. I am on dialysis as first transplant rejected after 7 beautiful years. Life is mess on dialysis and not worth on diaysis.am with you and will follow your updates.

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  7. Hi Stacy, I found your blog very moving and find it difficult to believe what has happened to you and what you have been through. Hope things improve and that you are soon feeling much better. Would love to come and see you if you feel like having visitors. Please keep your amazing blog going and let me know how you are getting on. Take care. With much love Penny xx

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    1. Hi Penny, thank you so much for your kind words. It has been a real rollercoaster over the past few months! I hope you are doing well? I would love to see you if South London doesn’t sound too far. Do you still have my number? With love, Stacy xx

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  8. I too was diagnosed with end stage renal disease at 30 years old. 6 months later and everything is finally sinking in. Thank you for this blog. It is very helpful to know there are others going through what I am going through.

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    1. Hello Jenn, thank you so much for reading and commenting. I am glad it was helpful; though I am sorry that you too are going through kidney failure and all it brings. I do hope you are doing okay with it. If you ever want to swap stories, then that would be fab 🙂

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