Kidney Matters - Issue 17 Summer 2022
Your Summer 2022 Kidney Matters magazine is out now! In this issue: • Chronic kidney disease and the cost of living crisis • Navigating nephrotic syndrome as a family • Kidney clinic: coping with brain fog • Celebrating Ramadan when you're living with CKD • Kidney Kitchen's fresh-tasting Salad Niçoise – perfect for summer! We know that being a kidney patient can be tough at times and that accessing the right help at the right time isn’t always easy. We’ve spent a great deal of time talking and listening to kidney patients about what we can do to address this at every stage of kidney disease. The response was overwhelmingly ‘improved communication’ on what is going on in the kidney world, how other patients manage their life with kidney disease and what is available to them in terms of support and how to access it. Kidney Matters has been developed to tackle this as well as the many other issues kidney patients face in day-to-day life. Along with shared patient experiences, Kidney Matters provides information on how to access emotional and practical support, financial assistance through our grant schemes, advice from leading kidney specialists and tips on how to keep as well as possible by eating a healthy diet whilst on dialysis.
Your Summer 2022 Kidney Matters magazine is out now! In this issue:
• Chronic kidney disease and the cost of living crisis
• Navigating nephrotic syndrome as a family
• Kidney clinic: coping with brain fog
• Celebrating Ramadan when you're living with CKD
• Kidney Kitchen's fresh-tasting Salad Niçoise – perfect for summer!
We know that being a kidney patient can be tough at times and that accessing the right help at the right time isn’t always easy. We’ve spent a great deal of time talking and listening to kidney patients about what we can do to address this at every stage of kidney disease. The response was overwhelmingly ‘improved communication’ on what is going on in the kidney world, how other patients manage their life with kidney disease and what is available to them in terms of support and how to access it.
Kidney Matters has been developed to tackle this as well as the many other issues kidney patients face in day-to-day life. Along with shared patient experiences, Kidney Matters provides information on how to access emotional and practical support, financial assistance through our grant schemes, advice from leading kidney specialists and tips on how to keep as well as possible by eating a healthy diet whilst on dialysis.
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4
It’s costing me more and
more just to stay alive
as told to Olivia Holcombe
FEATURE ARTICLE
For the three million people living with chronic kidney disease, the cost of living increases
in 2022 will be especially difficult. This crisis is hitting the most vulnerable, some of whom
are worried about how to afford to keep vital pieces of medical equipment, such as their
dialysis machines, running at home given steep rises in fuel bills.
Phoenix Halliwell, 46, has been on nocturnal homehaemodialysis
for nine years. He lives in Coventry with
his wife Sam, a midwife, and their daughter Rosie, 11.
Phoenix tells us what life is like as someone living with
chronic kidney disease (CKD) trying to keep his home
warm enough to do the dialysis that keeps him alive -
and how Kidney Care UK is helping people like him.
Phoenix’s story
Money is tight for our family, as it is for many, right now.
But my stark reality is that it’s costing me more and
more just to stay alive.
I was diagnosed with glomerulonephritis as a teenager.
This means my kidneys can’t remove toxic waste and
fluid from my body. Dialysing at home in my living room,
five nights a week, does that job and keeps me alive.
Our energy bills are set to rise astronomically. Our
monthly payment is currently £80. But, on asking what
rise we should expect, we’ve been quoted a whopping
£300 per month. We’ve turned our heating off, so we
can reduce costs and keep my dialysis machine on.
This is what we have had to do, but there was a serious
consequence to this decision - my dialysis machine
stopped working. The dialysate flowing through the
machine needs to remain at a certain temperature
and the machine had become too cold to work, and
started bleeping.
“When we first researched
haemodialysis at home nine years ago,
we were told that it was good for my
renal unit because it’s far cheaper than
in-centre dialysis. It now feels like we’re
having to pay to keep me alive“
www.kidneycareuk.org
Photography by Keith Pennington
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