I want to help people to take control, not let dialysis be done to them, and start to feel better...

Steve, home haemodialysis patient

Learning the hard way

My kidney journey begins about 20 years ago, when I had a biopsy to confirm my suspected diagnosis of IgA nephropathy. It was the day before the twin towers were hit, I remember coming back from hospital the day after, and not knowing whether I was watching a disaster movie or reality I was so out of it. That date is firmly rooted in my mind.

From then on, I was on a ‘wait and watch’ programme for years – I would go to a kidney clinic every six months for tests and check-ups, but I felt fine.

Then my dad got ill with cancer and I missed a kidney appointment. This meant I had to go back to my GP and get re-referred. Because of what was happening with my dad, and because I was feeling fine, I didn’t do this. I didn’t think it was important. I then lost my dad and wasn’t in the mental space to look after myself at all. Unfortunately, this was the crucial period when I really needed to be seen by my kidney team as my kidney function had started to decline rapidly.

I hadn’t seen the kidney team for two years, but I got to the stage where I couldn’t cope - I was feeling really terrible. I went back to my doctor in early 2017, they carried out some tests and found my kidney function was through the floor. I ended up being admitted to hospital and needed to start dialysis really quickly.

Finding a treatment that was right for me

I went into hospital and was given education about my treatment options. At the time I was massively scared of needles, so I opted for peritoneal dialysis (PD). At that point I was just approaching 50, and felt too young to be spending the rest of my life in hospital. Other than my kidney function I was fairly well. The best option for me was to get home, and to get home without needles.

I received PD for 12 months, however it was clear that it wasn’t making me feel well and I wasn’t getting the clearance that I needed. The kidney team were pushing me to move to haemodialysis (HD) for six of these 12 months, but I was just so scared of the needles.

I did concede that if it wasn’t going to work out, I needed to be ready, so I had my fistula formed around 8-9 months into my treatment just in case. The thought of having a neck line put in filled me with even more dread.

My shared care experience

Eventually, on 26th March 2018 I had my first session of in-centre haemodialysis. At that stage I knew I was going to go home, I just had to go in centre as I didn’t have any of the equipment at home yet, and I needed to get used to the needling, setting up the machine etc – I went in-centre always knowing that I wanted to be back at home.

At my unit they have four dialysis bays, and a separate shared care bay. Patients here were doing more or less of their own treatment. The patient and nursing staff shared the treatment between them - it was the ideal place for training. The staff were used to helping patients develop their own skills. There was a patient there who had been on home haemodialysis previously but could no longer manage at home, although he was perfectly able to manage his machine by himself. He had a great deal of experience, and in the down time it was useful to chat to him and other patients. If you are in an environment where everyone has control more or less of their own treatment, the inspiration is there for you to take more control. If you come into an environment where everyone is lying back and having the treatment ‘done’ to them, you’re influenced to do the same. This was really important and I was really pleased to be on that shared care bay.

For me, there really needs to be a shift in focus. I think there should be an expectation that patients are going to go home unless there is a reason they can’t. That’s where they are going to get the best treatment. Not all units are set up in a way that encourages and promotes people to get home.

Getting passed the ‘needle barrier’

It took me several months to deal with needles. On the first day I couldn’t even watch them unwrap the packet. I genuinely couldn’t deal with the thought that the needling was coming, but I knew it was the only hurdle I had to going home. I knew I wouldn’t have a problem with the machine, keeping myself clean, following a routine or anything else. The problem for me was getting my needles in.

I tried really hard to just look at what they were doing just a little bit longer each time. Over a period of months, I was able to look at the needle up to the point where it was just about to be stuck in my skin. In June of that year, the nurse that was cannulating me was too quick for me, and the needle was in before I was able to look away. After that, I knew I was nearly there. If I had watched it go all the way in, there was no reason why I couldn’t do it myself.