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Shane's story of life with #nofilter

Shane shares his story and how kidney disease has affected his life.

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Our campaign features Shane, who has kidney failure and spends four days every week on life-saving dialysis. Shane’s high blood pressure was the first indicator of his kidney disease, which was diagnosed two years later. Now 48 years old, Shane talks frankly about living with kidney disease and the changes it has wrought on his life and that of his family.

We would like to thank Shane and his family for their courage in taking part in this campaign.

Shane's story

I was working in retail in 2011 and I would find that halfway through the day I would get very, very tired very quickly to the point where fatigue would come in and I’d just feel like shutting down a bit. I went to the GP to get a check-up and they came back saying my blood pressure was extremely high, which they put down to hypertension. So they put me on blood pressure tablets. A routine blood test then showed elevated levels of creatinine (a waste product) which led to a biopsy and my kidney disease diagnosis.

In 2016, routine bloods showed my function had dropped to 25%. My kidney function was still okay during that time, and I was playing cricket 2 to 3 times a week and on weekends, as well as running and going to the gym.
But two years later, my kidney function went down big time. I had a bloating face, bloating ankles and I couldn’t get out of bed. I went up to 105 kilos, but most of it was fluid. I was working in a job where I was pacing all day – a meatpacking job – I was sweating to a degree but I was drinking 2 to 3 litres of water a day. I pushed in my ankle as it looked weird and it dints – I thought that’s really weird, you shouldn’t have that much fluid.

Going on dialysis

I went into hospital in January 2019 and was told I had 6% function and I was shocked – because previous to that I was 15% which was fine because I could still function, but 6% was a real shock and within weeks I was on dialysis. Dialysis first time – needles weren’t my favourite thing, my blood pressure went crazy and dropped to the point where they panicked a bit. It was just completely daunting.

(Wife Jodie said, ‘it was even daunting for me as a nurse, it was like this is our new normal’.)

My treatment is home haemodialysis, which means you need to do your own needling. So they gave me a sponge to practice on and I was freaking out. I practised for a week and building up to it and then Jodie said to me, are you up to needling now and I’ll come with you to hold your hand – and I was still building up to it – so I couldn’t hold off any longer. I remember thinking I really need to focus as the right angle won’t hurt as much – I put it in and thought that’s not so bad, and then they said are you right to do the next one, and I said, nuh, so I let the nurse do the next one…baby steps. It was a really big achievement to do the first needle.

Living with kidney disease

Biggest challenge with kidney disease was juggling work, family life, and dialysis - it's going well at the moment but it’s still going to be a challenge as it’s 7 hours. The thing I’m finding at the moment is finding a routine on a weekend, I don’t like dialyzing on a Saturday – I find that’s sort of the day.

I think the biggest challenge is whether the overnight is going to work for me and then to treat it like another job. I was working 3 days a week (although not at the moment due to Covid-19) and dialysing the other days, and 5 hours on a Saturday and Sunday.

How his family copes

The girls have been really good – two of the older ones went to the training sessions to learn the emergency procedures if they’re at home with me. Obviously they’ve had loads of questions but they’ve embraced it. The younger ones know – the twins know – because they don’t like needles and they don’t like blood – they’ll peer through the door.

Why early detection is important

At the end of the day, early detection is important because you can start making changes like dietary, like exercise and that will hopefully prevent things spiraling and escalating.

What he wishes everyone knew about kidney disease

I guess it’s just making changes in your lifestyle that would benefit you long term because otherwise, you do eat the salty foods, you do overdrink – just let yourself go and people need to realise you’re not filtering all the toxins and things out of your body. It’s got to stay somewhere and at the end of the day, you’re going to get sick very quickly and you’re going to pick up colds and things because your immune system is not working.

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