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.
20Celebrating my way – RamadanFEATURE ARTICLERamadan is the ninth month of the Islamic calendar and is celebrated by Muslims allover the world. Often known as a month of mercy, Ramadan is not only about abstainingfrom food and drink, but also as a month of self-reflection, spiritual growth, and charity.And although patients with chronic kidney disease (CKD) are exempt from fasting, howdoes it really feel to not take part in one of the blessed months of the year? For some,it feels as if part of them has been taken away while for others it’s easier to accept andgain whatever they can from this monthZak Khan - transplant recipientThings have changed for me in Ramadan. Eager to takepart in this month, I started fasting from an early age. Istarted with fasting for half days, building myself up tofull. Little did I know that this would be short-lived.When I was diagnosed with chronic kidney disease(CKD) several years ago, I was only 17. At first, it feltthat CKD was taking away so much of me, of who Iwas and my identity. I could no longer go swimming,play contact sports such as boxing, or do thingsother teenagers my age would do. And fasting was yetanother part of my identity I couldn’t embrace, nomatter how much I wanted to.“At first it felt that CKD wastaking away so much of me, of whoI was and my identity. I could nolonger go swimming, play contactsport, such as boxing, or do thingsother teenagers my age would do.And fasting was yet another part ofmy identity I couldn’t embrace, nomatter how much I wanted to“
21While I was on dialysis, after taking my medication, Iwould fast from lunchtime onwards. I would eat withmy family at iftar, the time of sunset when we breakour fast. Although Islam allows me not to fast due tomy health, I really wanted to feel the experience, I waseager to. I guess only those who have lived it know thefeeling.Ramadan is more than just fasting, so I makesure I take part in all other aspects too. One ofthem is going to the mosque for the night prayercalled Taraweeh, which means rest or relaxation. Thisprayer is optional and often quite long but seeing allthe community come together gives me the energyand strength to take part.Now that I’m transplanted, I have a similar approach,the only difference is that I drink throughout the day.I have so much to be thankful for. I am trying to clawback some of the things CKD has taken away from me, Ican enjoy boxing and swimming, and more importantlyenjoy the spiritual benefits of Ramadan.I would advise others to try their best and not to giveup. I gave up a lot of times. I gave up every day. But Ikeep fighting, there is always a way, and this is my wayto celebrate.Sabina Saeed - peer supporterFrom all my years of living with CKD, I remember alwaysbeing told what I couldn’t do. Whatever it was, it wasalways bad for my health. I always felt like the odd oneout, or alone. But I learnt how to cope and live withCKD.One of the most important and beautiful things thatI miss doing is fasting during the month of Ramadan.In Islam, people like me who have health issuesare exempt from fasting. But when my nieces andnephews question why, it’s difficult to explain to them,and it does upset me at times.Ramadan was always different for me. I was neverallowed to fast. I had to look after my kidney. Myparents would wake my brothers and sisters upfor suhoor, the early morning meal taken before dawn,but never me. I would still wake up sometimes justto eat the delicious breakfast, but my dad would sayyou can try, but you can drink as much water as youwant and I would be happy with that. I would call thismy chiri fast or baby fast. In this month, I rememberhelping my mum set the table for iftar, the eveningmeal where we break the fast. Milkshakes and fruitsalads were staples at our table. But Ramadan wasmore than this. It was about praying, connecting toGod, reflecting on my past and planning the comingyear. Eating together to break our fast brought us allcloser as a family.Sometimes I feel I have missed out on a lot of importantevents, but I am grateful to be able to enjoy thesemoments in Ramadan. I am grateful that I can also gainsomething from this month, albeit not fasting, but endingthe month by celebrating Eid with my loved ones. Andalthough I can’t fast, at least I can celebrate it my way.“ I am grateful that I also cangain something from this monthalbeit not fasting, but ending themonth by celebrating Eid withmy loved ones. And although Ican’t fast, at least I cancelebrate it my way“Issue 17 | Summer 2022
- Page 1 and 2: Summer 2022Issue 17Facing a costof
- Page 3 and 4: 3Welcome toKidney MattersHello all,
- Page 5 and 6: 5When you dialyse, it’s common to
- Page 7 and 8: 7A night to remember: CarlyFamily a
- 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: 19The communication was great. I wa
- 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
21
While I was on dialysis, after taking my medication, I
would fast from lunchtime onwards. I would eat with
my family at iftar, the time of sunset when we break
our fast. Although Islam allows me not to fast due to
my health, I really wanted to feel the experience, I was
eager to. I guess only those who have lived it know the
feeling.
Ramadan is more than just fasting, so I make
sure I take part in all other aspects too. One of
them is going to the mosque for the night prayer
called Taraweeh, which means rest or relaxation. This
prayer is optional and often quite long but seeing all
the community come together gives me the energy
and strength to take part.
Now that I’m transplanted, I have a similar approach,
the only difference is that I drink throughout the day.
I have so much to be thankful for. I am trying to claw
back some of the things CKD has taken away from me, I
can enjoy boxing and swimming, and more importantly
enjoy the spiritual benefits of Ramadan.
I would advise others to try their best and not to give
up. I gave up a lot of times. I gave up every day. But I
keep fighting, there is always a way, and this is my way
to celebrate.
Sabina Saeed - peer supporter
From all my years of living with CKD, I remember always
being told what I couldn’t do. Whatever it was, it was
always bad for my health. I always felt like the odd one
out, or alone. But I learnt how to cope and live with
CKD.
One of the most important and beautiful things that
I miss doing is fasting during the month of Ramadan.
In Islam, people like me who have health issues
are exempt from fasting. But when my nieces and
nephews question why, it’s difficult to explain to them,
and it does upset me at times.
Ramadan was always different for me. I was never
allowed to fast. I had to look after my kidney. My
parents would wake my brothers and sisters up
for suhoor, the early morning meal taken before dawn,
but never me. I would still wake up sometimes just
to eat the delicious breakfast, but my dad would say
you can try, but you can drink as much water as you
want and I would be happy with that. I would call this
my chiri fast or baby fast. In this month, I remember
helping my mum set the table for iftar, the evening
meal where we break the fast. Milkshakes and fruit
salads were staples at our table. But Ramadan was
more than this. It was about praying, connecting to
God, reflecting on my past and planning the coming
year. Eating together to break our fast brought us all
closer as a family.
Sometimes I feel I have missed out on a lot of important
events, but I am grateful to be able to enjoy these
moments in Ramadan. I am grateful that I can also gain
something from this month, albeit not fasting, but ending
the month by celebrating Eid with my loved ones. And
although I can’t fast, at least I can celebrate it my way.
“ I am grateful that I also can
gain something from this month
albeit not fasting, but ending the
month by celebrating Eid with
my loved ones. And although I
can’t fast, at least I can
celebrate it my way“
Issue 17 | Summer 2022
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