Tuesday I went off MRI for dialysis (see previous entry in blog) and it was a success.
Wednesday I phoned work to update my boss & ask if I could take this week off as I'd already missed 2 days, had dialysis tomorrow & hospital appointments Friday.
Thursday - Hari & I went off to Altrincham. The journey was crap, we kept getting lost. When we found it, we missed the turning so had to turn round & I managed to find a side street choked with traffic & roadworks. I was getting more & more anxious & more and more stressed. We managed to turn round, pulled into the carpark & up to the barrier. We obviously didn't have a pass as I'd never been here before so we pressed the call button for a good 5 minutes before someone answered it. We parked ok & went up to the ward on the second floor. I was shown to a bed, weighed and left to sit while a nurse, called Gill, set my machine up & went through the paperwork I bought with me from MRI.
I was feeling really emotional and tearful. I hadn't wanted to be like this, I'd wanted it to be a positive beginning of my training journey but I felt shattered & really just wanted to sleep. They took my obs & then got ready to do the needles. It was decided that an injection of lignocaine would be a good choice, but that needle hurt, only a bit but it did and as I was hovering already on the edge of tearfulness, the tears just came. I felt ridiculous and really, really fed up and this was even before the two dialysis needles went in.
The needles did go in, with a good deal of pain and the whole 3 hours of dialysis was uncomfortable with one of the needles.
I tried to relax once I was on the machine but it just wasn't happening. I had a cuppa tea & some biccies when the trolley came round and I later a sandwich & another cuppa. Half way through the treatment I got an excruitiating pain in my abdomen & all down my left leg. It was incredibly painful & really uncomfortable. I couldnt change position because I wasn't to move my arm, I kept trying to shift to ease it but it persisted and started to cause spasms in my leg. I could only get comfortable with my left leg bent at the knee and slung sideways, which hurt my lower back but the pain eased. The nurses didnt seem to know what it was or even offer a suggestions, they just gave me a couple of paracetamol. Hari wasn't allowed in the room AT ALL which I thought was slightly over the top, so he was sat out in the corridor for 4 hours and I was sat inside the room for 4 hours, and I could really have done with my mind taking off everything by Hari.
At the end of the dialysis I couldnt wait to get out of there and didn't want to go back. Hari drove me home, it was a pretty silent journey and the traffic was horrendous.
He went of to his Buddhist centre after making some soup, it was all very silent. I really needed a cuddle and to cry on his shoulder but thats not his thing. He went out and left me to cry alone.
The next day I woke up alone as Hari was at work. It was probably a good thing as I was still incredibly down, there wasn't an ounce of positivity anywhere to be found. I rang the pre-dialysis nurses as soon as I got up & had a very tearful conversation with Krisha in which I decided to ask to go back to MRI. I knew in myself that I really wasn't up to learning to do my own dialysis yet. Hell, I can barely look at my own arm when it has needles in it at the moment. I'm not too keen on watching the blood go round the machine cos I know thats my blood. I feel sick when I think about needles. I needed the nurses to do it for now, I needed to feel safe in the safety of their expertise. I needed to stop trying to run before I could walk. I always manage to cope with everything, its what I do. I've been coping with things since I was born, there has always been a new health problem, a new disaster. 20+ operations, endless urine infections, endless hospital appointments, so I should be able to manage dialysis like a piece of piss. But I had to accept that I couldn't, not yet. I needed time to settle in to the whole having dialysis 3 times a week, get in to a routine of it being a large part of my life now before I tried to teach myself. I knew that now.
Krisha was great, very understanding & non-patronising. She rang me back to say she'd rung the training centre & Gill was going to re refer me back to MRI & I was to continue going to Altrincham until then. I was happy with that. That calmed my nerves a little. Krisha stressed that I could at a later date still train myself but maybe give it a few months to get into the swing of things.
That calmed me down and made me feel happier about the journey ahead.
That evening I had a long chat with a lady on facebook who lived in Chorlton called Cassie. She'd been through the whole journey too and her kidney failure was for the same reason as mine, Reflux. I'd not met anyone else who had the same reason before.
Cassie had been through the whole journey, kidney failure, peritoneal dialysis, haemo dialysis, home training, & transplant and was now healthy & working & in a good place. She was a great help, much more than I thought she might be - you can read her blog here - The Girl on Dialysis
Friday, I had a bit of energy. It was a short burst. I managed to get my dressings off... my arm is still very badly bruised
I had 2 clinic appointments and a hospital appointment today and by the end of the day I was totally knackered but relishing almost 3 days of dialysis !
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