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…

Not everyday is a good day

Why is it when you have things to do it all goes wrong? This morning has been tough, even for me. I surprise myself sometimes with how I deal with what I have to go through, today I was being tested, but I don’t like to lose.

After sleeping pretty much most of the day yesterday I woke up this morning to the sound of my alarm expecting to feel refreshed, wishful thinking! Dazed and feeling exhausted, I mean proper exhausted, the kind when breathing even feels difficult. I know why it is, my haemoglobin is low again but this morning I can do without it. I must get our cat Frank to the vet, then I can plug myself in. It’s not my normal way to plan things; I normally plan my day so that I do dialysis first then if I have the energy I’ll do what I need to do in the afternoon. This way there is no pressure on me. If it takes me an hour to connect myself to the machine then fine. But not today, I needed to be on and off my machine in time to pick Frank up. There’s the problem, right there, me. I’ve set myself up to fail right from the start.

After dragging myself out of bed, having a quick shower which I struggle to breathe my way through (laboured breathing can be a sign of anaemia, low iron stores and low haemoglobin, a symptom of kidney failure. Click here to read more on Renal Anaemia) I throw on some clothes and make my way past my dialysis room to grab the cat. Frank gets to the vets on time, I make it back home in one piece and start setting up my machine. Plenty of time to clean my blood, remove excess fluid and catch forty winks before collecting Frank.

I lined my machine, laid out my needles and flushed everything through with saline, my usual routine, nothing different from what I had done two days before. I checked my weight and my blood pressure, programmed the machine and then sat down ready to start needling.  Dave (my fistula) is cleaned and using my fingers I feel for the pulse, the ‘thrill’. It’s buzzing nicely and I line up my needle ready to pop it in. It slides in but I know I haven’t hit the spot as it doesn’t feel easy, it feels resistant so I pull out and try again. I check my angle of the needle, reposition my arm and try again and again and Again. After five minutes I clean my fistula, reload my needle with saline and start over. The last time I dialysed it went in first time, I try to remember my position then, the angle I used but everything appears to be the same. It’s obviously not because another fifteen minutes has passed and I’m still no further forward. In fact I feel I’ve taken ten steps backwards.

I take a break, walk around the kitchen and have a little talk with Dave. ‘Come on, be nice to me please’ I plead with my arm. If anyone was to hear me they’d think I had gone crazy and had someone held hostage under my jumper. I do a few stretches and sit back down. I clean my arm and try a new needle, this usually works. Like muscle memory I think the needles remember! Nope not this time, this time I tried everything I had been taught, the frustration was building with every attempt and I could feel myself getting upset. My arm, which usually doesn’t hurt was starting to hurt, telling me to stop and normally when you get tired, when things hurt you stop, you do something else. But with dialysis you can’t really do that, it needs to be done. Thoughts of what I will need to do if I can’t get my needle in creep in and I resist the temptation to be drawn into putting Plan B into action.

I wouldn’t say I’m stubborn but I am determined and very proud. There was no way I was going to let something that I’ve done almost every other day for the past seven months get the better of me. ‘I can do this’ I tell myself, ‘stop putting so much pressure on yourself, cut yourself some slack’. I reach for the sweets. Being diabetic I have an emergency stash, today was an emergency of a different nature. One rhubarb custard down with a little shuffle of my cushion on which my arm is rested and I go again. Effortlessly the needle slides in, laughing at me as it took its place perfectly in my fistula. The blood released immediately and the colour of my blood filled the long plastic tube attached to the needle. Only forty-five minutes late!!! The relief arrives and Plan B is safely put back in its box.

One down, one to go. For haemodialysis you need to insert two needles, one to take the blood out (done) and one to put the blood back in once it’s been through the machine. I wasn’t in the clear just yet. Clean, position, feel the thrill, line up, insert, Bobs your uncle. The second needle was simple, the way the first was meant to go. The next four hours flew past with no problems, what was all the drama about?!? Now I just need to remember how I did it for next time, wish me luck…