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…

Why haemo?


Why would any body want to stick big needles into themselves three times a week and be sat still for up to four hours at a time? Well for me it was easy, I didn’t like the thought of having a plastic tube coming out of my stomach and to have to have my sleep interrupted. Yes, I’m sure I’d get used to the noise, yes the tube can be hidden and yes it’s very discreet but my sleep is important and when you take your clothes off the tube is still going to be there and that’s something I couldn’t get my head around.

It sounds really vain and to be honest Dave (my fistula – access point for my needles) isn’t the nicest looking thing but as a woman who still wants to feel good when she takes her clothes off, peritoneal dialysis (PD) wasn’t for me. At least in the throws of passion I can move my arm out of the way, the alternative would surely get in the way?!?

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My decision wasn’t purely based on the fact I wanted to remain sexually attractive, (and I’m not saying that you can’t be on PD but I didn’t feel I could) there were other factors such as, haemodialysis (HD) through my arm meant I could detach it from being a part of my body and condemn it to being reserved for dialysis. Going through your stomach, as they do with PD meant invading a space that is at the centre of your body, quite literally but it’s also sensitive. A place you don’t just show off (unless you’re a member of a 90’s girl group then it’s obligatory), it’s a reserved area and although I don’t go shoving my arm in people’s faces I felt it was more acceptable to relinquish my arm over my stomach.

I spent a lot of time meticulously listing the pros and cons for both HD and PD and met a lovely lady who showed me her PD tube and told me all about the benefits of going down the PD route. She hid it well and looked great but I couldn’t get past having a tube sticking  half in/half out of me. I did a lot of research, which would best take out the toxins that my failing kidneys aren’t able to, which would give me more freedom and which had the lowest rate of infection. There is a lot of information on the internet (here’s a good link http://www.nhs.uk/Conditions/Dialysis/Pages/Advantages-and-disadvantages.aspx ) and the hospital Pre Dialysis Team shared with me all the benefits and disadvantages of both and I was very pleased when my vanity wasn’t questioned but actually understood. Don’t you find that medical professionals often forget that we are human? That we have real feelings and that our bodies aren’t just there to function without emotion? However, in this case they truly did understand, a very pleasant reprieve.

Before deciding I visited the haemodialysis ward and surprisingly I wasn’t too overwhelmed by it all. Being a diabetic for many years means I have seen my fair share of hospitals so I could see that this environment for me, was do-able. I could however see that for others it could be a little daunting. Each bay has a machine, a bed and lots of tubes which are connected to the patient. There’s no privacy and the machines make a low humming noise as it sucks the blood out of the patients, whizzes it through a filter then pushes it back in. Fascinating to watch and amazing when you think of what it’s actually doing. The wards are calm and the patients, those that were awake, sat and watched the world go by, their lives on hold for four hours. It seemed pleasant enough, no one was crying in agony, there was no blood flying around everywhere, no one pleading with me to make a different choice. Nope, they all looked pretty chilled and all made better by the tea trolley which handed out free biscuits as well as hot tea. My kind of place!

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On the day my Consultant called me to say I needed to start HD I was a little shocked. Even though my symptoms were mounting up, I knew it was the right thing to do and I was certain HD for me, it still felt like kidney disease was winning.  I knew people who had kidneys that weren’t functioning as well as mine and weren’t on dialysis yet, it didn’t seem fair. I started dialysis a week later…

Many months on and I’m sure I made the right choice for me but when I look at Dave (my fistula) I have my doubts. He will be with me forever yet those on PD will have nothing so obviously visible bar a small scar to haunt them. When my needles don’t go in straight away I wonder if it would have been easier just to connect some tubes.  But, on my days off dialysis, when I roll over in bed and when I strip off butt naked I’m sure I have.

For those having to make the choice, haemo and peritoneal dialysis aren’t easy and both have their own benefits. It’s a personal decision, one of which only you can make. It’s important to take time to read all the info you’re given and see first hand how they both work. Once that’s done then go with your heart. After all it’s you that has to deal with it day in, day out. It’s you that will chose your battle scars and it’s you who will have to convince those voices in your head that you’ve made the right choice. Questioning your decision will be normal, it’s human nature. We are never fully satisfied that we can make the right choice when a decision is based (partially) on ‘how we feel’. I find talking to my cats help (failing that the Access Nurses are helpful) but that’s another story all together!

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Sun’s out, Dave’s out!

Temperatures are due to soar this week; a week long heat wave and with my love and longing for the sunshine this sounds like bliss but, I have ‘Dave’ to consider. Dave is my fistula, the best access for haemodialysis, my vein and artery sewn together to create a blood cleaning superhighway. He performs magic 3/4 times a week and keeps me feeling well yet I am still embarrassed by the way he looks. I chose to have him, was I regretting it?

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Meet Dave. My Fistula & buttonholes; my access for my needles to be able to clean my blood.

Two little holes on what looks like a raised, pulsing vein yet I’m more accepting of the future scar I will wear once I’ve had my transplant, a long obvious scar from my chest bone down to under my belly button. People just don’t get Dave, they are not used to seeing such wonderment (that’s how I prefer to describe it rather than disfigurement) on a 33yr old woman, especially when ‘you look so well…’.

So, today is a day off. A day off from dialysis, a rest day, a day to enjoy life and forget I’m a little bit broken at the moment. But it’s not really, not mentally, who am I kidding? Today is a day of dealing with one of the things kidney failure brings; dealing with the questioning glances as I try to blank out the fact Dave is standing proud. My mum tries to tell me ‘you can hardly notice it now’, I know her words mean well and are because she knows it bothers me, some reassurance, but I’m not blind. I notice as I walk into my local supermarket women acknowledging the fact I’ve made an effort with my outfit today, a green linen skirt and a navy vest top but her eyes are transfixed at my left arm as we pass one another in the crisps aisle. Vest tops, such a versatile item of clothing but at the same time exposes so much. A bingo wings worst nightmare and now I was finding out it was Daves worst nightmare too!

It’s hot out, what do I do; admit defeat and wear a 3/4 length sleeved top all summer or embrace Dave’s individuality and praise those whom bother to delicately enquire the ‘wonderment’??

Today’s a ‘sod it’ day. People stare because they don’t understand, they have enquiring minds but are not brave enough to enquire. So, with that in mind I’m off to wave Dave around town and should someone ask me about him I’ll tell them ‘it’s my blood cleaning superhighway’. If they don’t stare at me more after that then I will be worried!!!

Ps. Enjoy the sun and remember, don’t lock dogs in cars (or anyone/anything for that matter). It’s too hot!

For more info on how Dave was made follow this link:

Click to access 5659Pfistula.pdf