First day nerves…

I told everyone that I would take a couple of weeks off to get used to the ‘dialysis’ thing then I’d be back at work. How difficult could it be?!?

Before starting dialysis I had been told what would be involved, where it would take place and how often it would happen. What hadn’t been explained to me fully was how I would feel. They tried but could a nurse who has never had kidney failure, with the added complication of diabetes, with my fears and my body tell me how I was going to feel? I’m sure they’ve asked other patients about their experiences but this is me, the blood is going to be taken out of my arm, whizzed through a machine then pumped back into me in front of a whole ward. I can stand up and talk to people about my job, my passion but the unknown, what if I crumble, faint, cry even?!

We all feel differently, we all have different pain thresholds and we all have different weaknesses. What takes me every ounce of courage to overcome; Looking out of a window on the fiftieth floor of a hotel when you’re petrified of heights, might fill you with sense of exhilaration. What makes you worry might be something I’d never considered as an issue. How my body reacts may differ significantly to yours. Yes, there is theory that tells them how we are likely to react and experience tells them a lot but let’s not forget we are all different. All I had to go on was what I had read and their encouraging and well practised words.

So there I was, first day on the ward ready to be eased in gently to dialysis. I wasn’t nervous because in my mind I was in the right place. I was going to be in expert hands and they’d dealt with patients with my condition thousands of times. My preconceptions of the ward were right. On arrival I was swiftly showed to an open cubicle amongst others that already appeared to be connected to noisy machines, wheels turning and alarms sounding randomly, however all the patients seemed pretty relaxed and not worried by the constant beeping. The ward was warm and for me who had been suffering from the cold for years thought it was heaven, there was even a chap who handing out tea and biscuits, bonus! Everything seemed ok so far; comfy chair, temperature set so I could remove a layer or two and free refreshments to top it off.

I had brought my husband along with me as although I felt confident I had no idea how I was going to feel physically. Exhausted? full of life? sick? The nurses had warned me that I may feel a bit tired and people I had spoken to on Facebook (there are lots of pages/groups available where people share their experiences) told me that they feel a bit sleepy after dialysis. I had also brought along my iPad, phone, a paper and the kitchen sink – not quite but I had come prepared. Before long I was greeted by the nurses who immediately put me at ease. They seemed busy but super capable of multitasking.

One nurse added lines to my machine whilst another took me to weigh myself. Little did I know how important this number would be from here on; my ‘dry weight’. This is the weight my body is without the extra fluid build up from my kidneys not being able to do their job properly. Blood pressure taken and feet up on the bed, arm at the ready. My fistula/’Dave’, had been healing for the past few months and I had done the required exercises so we were all set to get this on the way and get back to normal…

Across the ward a trio of gentlemen watched with interest at me the newby, occasionally passing a reassuring smile. Little did I know these ‘gents’ would become comrades…friends. Theirs nods of encouragement and their calm and experienced demeanour made me feel more comfortable. After all I was young (in comparison – sorry guys!) and being diabetic I was used to needles. Freezing spray was duly applied and needles were prepped ready to break Dave in gently. I had heard that sometimes it doesn’t go quite to plan on the first attempt. The fistula isn’t big/strong enough and it can ‘blow’, and it did. Even though the nurse needling me looked regrettable and genuinely concerned for my wellbeing it didn’t hurt that much, the bruising however showed just how sensitive Dave was. Ice and cream (sadly not ice cream, hah) were given and we were sent home.

My are after my first unsuccessful needling

My are after my first unsuccessful needling

It was a short first session and in fact I hadn’t even experienced ‘the machine’. As I left the ‘gents’ introduced themselves. I realise then but looking back now it was a moment I would never forget. They reached out to me, the hard faced career driven woman who ‘didn’t do emotion’ who would ‘crack it and get back to work’. They saw straight through my façade. They knew what I was about to go through and offered a friendly welcome to the group.

The following week we were back and I although the bruising hadn’t gone (it looked a lot worse than it was) the nurses readied themselves to have another go. Successfully this time the needles went in! Going in I felt nothing, my arm suitably numb by the freezing cold ice spray they used – I swear that the spray hurt more than the needles themselves. I am not sure what I expected to feel as the blood was taken from me, filtered through the machine and pushed back into me but I guess I was expecting to feel something and I didn’t, nothing. I sat still, my arm propped up by a pillow, something I would soon understand as a luxury. Pillows seemed to go missing, where do they all go? Is there a massive room full of marshmallow looking flumps waiting to be leant upon?? They certainly never found their way back to our ward!

My arm (a few weeks later) plugged into the machine resting on one of the lesser known Tarver Ward pillows!

My arm (a few weeks later) plugged into the machine resting on one of the lesser known Tarver Ward pillows!

After an little while of my blood flowing through the machine nicely the nurses left my side to continue with their other jobs; hooking us up to the machines was just one of the many things they did. Monitoring blood pressures, responding to alarms, administering medication, educating, checking patients were ok, being friendly, caring, looking at pictures of patients cats, listening to stories from the old days, laughing at not so funny jokes, showing empathy were all in a days work for the staff on the ward. Their activities being my entertainment as I adjusted to the new environment. From day one I watched as they meticulously followed their routines, fascinated the time flew by, two hours done. Blood pressures checked, needles out, weight checked and I was free to go home. That was it, easy!

I made it all of five minutes before falling sound asleep in the car on the way home and I didn’t wake until we pulled up on our drive, an hour and a half away from the hospital. Whilst it hadn’t been physically demanding, emotionally I was drained. I gave myself a pat on the back, slipped into my PJs and went to bed knowing this was just the start, it wasn’t going to be easy but the gents would be there to say ‘hello’. This was doable…

7 thoughts on “First day nerves…

  1. Maria says:
    Maria's avatar

    I received my transplant in September after 41/2 years on the list! I’d like to thank
    You for sharing your experiences it’s so nice to know you had similar apprehensions to me but also interesting to know your views on PD as they were interesting you had q phobia of a tube out of your tummy and I had a phobia of a fistula !!! It’s interesting to read another persons take on it all! Like you say it’s a personal choice and both have pros and
    Cons!!! Anyway thanks for sharing !!! Take care xx

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    • LeaCarvell says:
      Lea Carvell's avatar

      Thanks Maria, it just goes to prove that one solution doesn’t work for everyone and being able to choose is something we’re very lucky to have.
      That is a long time on the list. How did you keep sane all that time? Hope your recovery is ever improving??

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  2. Debbie Moore says:
    Debbie Moore's avatar

    Thank you for writing this blog and sharing your thoughts, feelings and experiences . As a mum to an amazing young man with special needs who has just turned 20 last week and has had CKD since he was 6 months old it is helping me understand what he is about to go through as we start preparations for dialysis (surgery for fistula next week). He cannot communicate and you are helping me to understand what he will be experiencing so I know how to support him. He has also in the last month been diagnosed with some form of diabetes and has been on insulin for the past 3 weeks . He has been given CGM as he cannot tell me when he is hyper or hypo.

    I’ve learned so much already from reading your posts …Thank you for taking the time to write this. Stay well and I hope you get ‘the call’ very soon x

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    • LeaCarvell says:
      Lea Carvell's avatar

      I hope your sons surgery goes well, it’s a fairly straight forward procedure. He will just need to do exercises a few weeks later to build up its strength. Squeezing a squash ball or a pair of socks 😉

      I’m glad my diaries are helping. I went into this with limited knowledge and certainly not from someone close to my age. We have different worries, concerns than a 70yr old person who has lived their life. With the added pressure of diabetes to contend with its a challenge but I’m sure you’ll help him through.

      Diet and exercise is important. Doing things he’s always done will help. Just because he will be on dialysis doesn’t mean he can’t do things; they just take a bit of planning and you need him to listen to his body. I’ve had to give up concert tickets and turn down shopping trips because my body was tired. It’s quite easy then to think you’re missing out, that dialysis is awful but that’s when you can help. Do other things, duvet days, house parties, take away (although be careful with his diet) – things he can still do that mean he doesn’t feel left out. Most of the time he’ll be able to do everything but sometimes we get a little tired.

      The worst thing I hear is ‘you don’t look ill’. It’s a confusing statement to me because I don’t always feel great but dialysis helps to keep you from feel worse. I try everyday to present myself to the world as if I’m normal, I often get away with it but my energy levels deplete quickly. So, at a glance I look ok. Inside I’m exhausted and fighting to smile whilst thinking how cruel life can be – I won’t show anyone, I’m a fighter and I know that soon, my call will come. I’m pleased I still look well but it’s not all the time, there are days when I can’t find the energy to leave the house – people don’t see that, but you will.

      I hope all goes well and my diaries continue to give you an insight into how your son is feeling, what to expect and that it’s not all bad.

      L x

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  3. Sarah-Jane Rooney says:
    Sarah-Jane Rooney's avatar

    So touched by your account of your first days on Dialysis. My first day was slightly marred and over shadowed by my husbands leaving. He had been with me through a lot already (peritoneal dialysis and a failed transplant) but had enough and had to get away. So my nephews had stepped in to drive me in and bring me home. But I was very emotional and feeling a tiny bit abandoned.

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    • LeaCarvell says:
      Lea Carvell's avatar

      That sound awful, thankfully your nephews were able to help you through. First shift nerves are difficult for anyone and having someone there gave me great comfort. Sounds like you’re a trooper!

      How are things now?

      L x

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  4. Dad x says:
    Dad x's avatar

    The way you handle yourself and the articles you write make me proud.. We hate what you are going through and if we could swap places with you, anyone of your family would (although could we handle it? I doubt that!). But with these articles you can give piece of mind and assurance to others. Just hope your time comes soon xxx love you xxx

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