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.
6Are you struggling to cope with therising cost of living?The recent steep rises in the cost of fuel, utility bills and food affects everyone. Butif you live on a fixed low income or on benefits, the struggle to make ends meet hasbecome overwhelming. Do not suffer in silence. We can help.Here at Kidney Care UK, we have developed an onlineresource tailored to meet the very specific needs ofkidney patients. We know that people with chronickidney disease will feel the cold more than otherpeople, just like Phoenix explains, so need to keep theirhome well heated, and will also need to eat a healthydiet in order to stay well. These are unavoidable costsassociated with our kidney disease which have to bemanaged in addition to the pressure of managing achronic health condition. Nobody should be facedwith the choice of whether to eat or heat their home.We also know that worrying about how to pay foreverything is not good for our mental health.How we can help youWe understand this struggle and have come up withan extensive range of practical ways to help youthrough these worrying times. For more advice andinformation, please visit our information hub atwww.kidneycareuk.org/get-support/cost-living-hub/The manyways our freeKidney CareUK advocacy,counselling andbenefits-checkservices canhelpApplying for aKidney Care UKindividual grant10 ways to loweryour utility billsWays tomaximiseyour income,including –making betterfinancialdecisions andensuring you arereceiving all thebenefits you areentitled toShopping for akidney-friendlydiet on a budgetBuilding youremotionalresilienceChecking thatyou are notoverpaying forelectricity, gasand waterTaking action bycontactingyour MPwww.kidneycareuk.org
7A night to remember: CarlyFamily and friends recently dined and danced the night awayto celebrate the life of mother-of-two Carly Jackson. Carlydied in March 2021, four years after being diagnosed withkidney disease. The event raised funds for two kidneycharities: Kidney Care UK and Kidney Research Yorkshire.In 2017, Carly fell ill and was admitted to hospital witha kidney functioning at just 6%. She soon startedhaemodialysis at York Hospital. Adjusting to a newroutine and having to spend so much time in hospitalaway from her children was difficult.After two years on dialysis, Carly was fortunateenough to have a transplant. But as many of us know, atransplant is never a cure for kidney disease. Instead,it’s a treatment and there is always a risk that thekidney will be rejected. The kidney started to decline,and after several stays in hospital due to infections,Carly contracted pneumonia. Due to her compromisedimmune system, Carly sadly lost her fight.Remembering CarlyCarly passed away at the height of the Covid-19pandemic, and, due to Government restrictions, therewas no opportunity to celebrate her life. Carly’s familydecided to organise a dinner and dance to honour hermemory, and raise funds for two charities that worktirelessly to make a difference to people living withkidney disease.Carly’s sister Stacie, and parents Tracey and Stuart,spent months planning a dinner and dance night at theHilton, York. Making sure that the entertainment wouldhave met Carly’s approval, the focus was for 140 gueststo be on the dance floor. A DJ and a saxophonist madethis happen and everyone had a great time.Support from local businesses provided over 80 prizesfor two raffles, alongside the ticket sales. A fantastic£12,517 was raised at the dinner in memory of Carly.Speaking aboutthe event, Staciesaid, “We thinkthat Carly will havebeen proud of whatwe achieved togetherin her honour. Her two children, Maddie aged 8, andJorgie aged 5 were present at the dinner, which madeit extra special. There was so much love in the roomfor their mummy – hopefully, this will be a treasuredmemory for them as they grow up.”Carly’s friends described her as “one in a billion” and“a force of nature”. Stacy remembers Carly: “She waswarm and mothering, a real livewire and hilarious. Sheloved her family and her children fiercely and is somissed every single day by so many people.”Laura Toop, Community Fundraising Manager atKidney Care UK, added: “We are always touched whenfamilies think of supporting charities like ours at sucha devastating time. Carly’s family have raised a hugeamount which will have a life-changing impact on thekidney patients we support. We can’t thank themenough.”If you would like to organise a fundraising eventin aid of Kidney Care UK, we’re here to guide youevery step of the way. Please get in touch with anyideas by emailing fundraising@kidencareuk.orgTogether we will ensure that no one has to facekidney disease alone.Issue 17 | Summer 2022
- Page 1 and 2: Summer 2022Issue 17Facing a costof
- Page 3 and 4: 3Welcome toKidney MattersHello all,
- Page 5: 5When you dialyse, it’s common to
- Page 9 and 10: 9how much our lives weregoing to ch
- Page 11 and 12: 11Table 2: Factors increasing the r
- Page 13 and 14: “Doing dialysis better islikely t
- Page 15 and 16: 15this, I can choose what she eats.
- Page 17 and 18: 17Graeme Whitworth, Jace Photo Agen
- Page 19 and 20: 19The communication was great. I wa
- Page 21 and 22: 21While I was on dialysis, after ta
- Page 23 and 24: Cooking in the Kidney Kitchen with
- Page 25 and 26: 25“One piece of advice she would
- Page 27 and 28: 27let our community suffer; this wi
- Page 29 and 30: 29Learn to be kinder to yourselfTak
- Page 31 and 32: 31“ My wife always knewthat when
- Page 33 and 34: 33A big thank you toSisters Emily a
- Page 35 and 36: LEARN MORE35A second reason why the
- Page 37 and 38: 37Joint Runner-up‘Romantic’ Thi
- Page 39 and 40: Supporting ourcommunity in crisisFo
7
A night to remember: Carly
Family and friends recently dined and danced the night away
to celebrate the life of mother-of-two Carly Jackson. Carly
died in March 2021, four years after being diagnosed with
kidney disease. The event raised funds for two kidney
charities: Kidney Care UK and Kidney Research Yorkshire.
In 2017, Carly fell ill and was admitted to hospital with
a kidney functioning at just 6%. She soon started
haemodialysis at York Hospital. Adjusting to a new
routine and having to spend so much time in hospital
away from her children was difficult.
After two years on dialysis, Carly was fortunate
enough to have a transplant. But as many of us know, a
transplant is never a cure for kidney disease. Instead,
it’s a treatment and there is always a risk that the
kidney will be rejected. The kidney started to decline,
and after several stays in hospital due to infections,
Carly contracted pneumonia. Due to her compromised
immune system, Carly sadly lost her fight.
Remembering Carly
Carly passed away at the height of the Covid-19
pandemic, and, due to Government restrictions, there
was no opportunity to celebrate her life. Carly’s family
decided to organise a dinner and dance to honour her
memory, and raise funds for two charities that work
tirelessly to make a difference to people living with
kidney disease.
Carly’s sister Stacie, and parents Tracey and Stuart,
spent months planning a dinner and dance night at the
Hilton, York. Making sure that the entertainment would
have met Carly’s approval, the focus was for 140 guests
to be on the dance floor. A DJ and a saxophonist made
this happen and everyone had a great time.
Support from local businesses provided over 80 prizes
for two raffles, alongside the ticket sales. A fantastic
£12,517 was raised at the dinner in memory of Carly.
Speaking about
the event, Stacie
said, “We think
that Carly will have
been proud of what
we achieved together
in her honour. Her two children, Maddie aged 8, and
Jorgie aged 5 were present at the dinner, which made
it extra special. There was so much love in the room
for their mummy – hopefully, this will be a treasured
memory for them as they grow up.”
Carly’s friends described her as “one in a billion” and
“a force of nature”. Stacy remembers Carly: “She was
warm and mothering, a real livewire and hilarious. She
loved her family and her children fiercely and is so
missed every single day by so many people.”
Laura Toop, Community Fundraising Manager at
Kidney Care UK, added: “We are always touched when
families think of supporting charities like ours at such
a devastating time. Carly’s family have raised a huge
amount which will have a life-changing impact on the
kidney patients we support. We can’t thank them
enough.”
If you would like to organise a fundraising event
in aid of Kidney Care UK, we’re here to guide you
every step of the way. Please get in touch with any
ideas by emailing fundraising@kidencareuk.org
Together we will ensure that no one has to face
kidney disease alone.
Issue 17 | Summer 2022
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