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.
14Orla, our beautiful five-yearolddaughter By Carrie GarrettFEATURE INTERVIEWChronic kidney disease (CKD) can impact anyone at any time, regardless of age. Andas we learn to navigate our way through some of the physical challenges of CKD,other aspects of our lives are also impacted, such as mental health, finances, andrelationships. But what do you do when your five-year-old is suddenly diagnosed withCKD? How do you cope?How it startedOrla was always a healthy girl. She was like a whirlwind,always full of energy. So, it came as a shock when wefound out that our five-year-old, our little healthy littleOrla, had kidney disease.It all started when Orla was unwell in September 2021.Thinking she’d caught a tummy bug from school, wecalled an ambulance. Orla was taken to the hospitalbecause of dehydration. We anticipated she would beput on a drip and would be back home soon with hertwo elder brothers.Orla’s little body was swollen, and the staff struggledto insert a cannula, so she could be hydrated. Thingstook a turn for the worse and she was taken into theintensive care unit (ICU). Her kidneys started to shutdown and several days later Orla was diagnosed withnephrotic syndrome.Numbness set in; I was in disbelief. It was a devastatingblow for my husband and me. Our elder two boys werealso quite young. I kept thinking, she is only four, how isthis possible? How do I explain to our boys what theirlittle sister is going through? How do I explain this to Orla?What we thought was a tummy bug ended up being achronic illness that will impact Orla for the rest of her life.was very upset. Orla started having nightmares, shevividly remembered each doctor, what they lookedlike, and which ones put needles in her. She did notunderstand why the dream-catcher on her window didnot catch her nightmares too. It was difficult seeing myfive-year-old going through this.We almost lost Orla three times in ICU. She doesn’tunderstand the severity of her situation, but sheknows that something isn’t right. And that’s where thenightmares come from. She has them every so often.Orla now has a routine: every morning she takes hermedication. She has come to the realisation that ifsomething doesn’t hurt then it is ok. So, she takes allher tablets without hesitation. I also test her urine. Theurine test indicates if Orla is relapsing, which she hastwice since being diagnosed. Every morning I feel aknot in my stomach, my heart is in my mouth. Both ofus wait in fear and trepidation, hoping and praying thatit tests negative, and when it is, I get that slight reliefthat she is fine for another day.Thankfully a care plan has been set up for her inschool. Her teachers are aware of her conditionand medications, and update me on her situationthroughout the day. The kitchen staff have provideda menu indicating the levels of salt in the food. FromTaking each day as it cameI was in the hospital with Orla for three weeks. Due toCovid-19 this became very difficult. During this time, Icould not see my boys. They were upset and wanted tosee us.My husband and I are both self-employed. I am afreelance hairdresser, and my husband is a joiner.We have three children and a house to run, so one ofus had to work. We tried to split the time, but I foundmyself with Orla most of the time. My husband wouldcome to the hospital to see Orla in the evenings afterfinishing a long day at work. This would give me timeto take a small break and get something to eat. Then itwas to bed, and it all started again the next day.How Orla copesWhen we came out of the hospital, we thought thatshe had taken it in her stride. But on Bonfire Night, shewww.kidneycareuk.org
15this, I can choose what she eats. Without this support,I don’t think Orla would have managed the transitionback to school and be herself.Impact on the familyWhen Orla came out of the hospital, it was verydifficult. It impacted our relationship. Althoughmy husband and I went through this together, wehad endured it differently. We experienced someresentment towards one another. I was at the hospital,seeing all the needles and Orla’s health deteriorating,and although my husband saw this a few times, he hadthe additional pressure of being at work and providingfor the family. It has been traumatic for us both, but indifferent ways.In addition to the emotional challenges, we areexperiencing financial difficulty, too. Orla is takinga high dose of steroids. This makes her feel hungryall the time. She is on a low-salt diet so we have tomake sure she has healthy meals throughout the day.When Orla came home, during the winter months wekept the heating on over longer periods to make sureshe was comfortable. We also make several visits tothe hospital for Orla’s appointments. With all theseexpenses and rising fuel, energy and food prices it isproving to be very challenging.“A A grant from Kidney Care UKhelped pay the bills for the monthOrla was in the hospital. It meantthat both my husband and I couldbe with her“Everything falls on my husband’s shoulders. Since Orlahas been unwell, we have both taken time off, whichmeans there is no income. On the days we don’t work,we don’t get any money.A grant from Kidney Care UK helped pay the bills forthe month Orla was in the hospital. It meant that bothmy husband and I could be with her.With the summer holidays coming soon we would loveto be able to go on holiday, but with Orla’s health andour financial situation, this is not something we can do.Orla’s futureWe do not know what Orla’s future holds. We takeeach day as it comes. We have been through a lot asa family, but we have come out more resilient andstronger. We realise that we cannot control everything.Some days Orla is more upset than others, but we areall proud of how she is handling it.For more information and support please visitwww.kidneycareuk.org/get-support“What we thought was a tummybug ended up being a chronicillness that will impact Orla forthe rest of her life“
- 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: “Doing dialysis better islikely t
- 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
15
this, I can choose what she eats. Without this support,
I don’t think Orla would have managed the transition
back to school and be herself.
Impact on the family
When Orla came out of the hospital, it was very
difficult. It impacted our relationship. Although
my husband and I went through this together, we
had endured it differently. We experienced some
resentment towards one another. I was at the hospital,
seeing all the needles and Orla’s health deteriorating,
and although my husband saw this a few times, he had
the additional pressure of being at work and providing
for the family. It has been traumatic for us both, but in
different ways.
In addition to the emotional challenges, we are
experiencing financial difficulty, too. Orla is taking
a high dose of steroids. This makes her feel hungry
all the time. She is on a low-salt diet so we have to
make sure she has healthy meals throughout the day.
When Orla came home, during the winter months we
kept the heating on over longer periods to make sure
she was comfortable. We also make several visits to
the hospital for Orla’s appointments. With all these
expenses and rising fuel, energy and food prices it is
proving to be very challenging.
“A A grant from Kidney Care UK
helped pay the bills for the month
Orla was in the hospital. It meant
that both my husband and I could
be with her“
Everything falls on my husband’s shoulders. Since Orla
has been unwell, we have both taken time off, which
means there is no income. On the days we don’t work,
we don’t get any money.
A grant from Kidney Care UK helped pay the bills for
the month Orla was in the hospital. It meant that both
my husband and I could be with her.
With the summer holidays coming soon we would love
to be able to go on holiday, but with Orla’s health and
our financial situation, this is not something we can do.
Orla’s future
We do not know what Orla’s future holds. We take
each day as it comes. We have been through a lot as
a family, but we have come out more resilient and
stronger. We realise that we cannot control everything.
Some days Orla is more upset than others, but we are
all proud of how she is handling it.
For more information and support please visit
www.kidneycareuk.org/get-support
“What we thought was a tummy
bug ended up being a chronic
illness that will impact Orla for
the rest of her life“
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