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.
26The rebel with a causeBy Adebomi OlaitanFEATURE INTERVIEWA lifetime of chronic kidney disease (CKD) comes with many life lessons. We haveto learn to cope with a new way of life. And while some of us are happy to just makeit through the day, week, month or even year, others are paving the way to changethe narrative and influence their communities to encourage more engagement andinvolvement for blood and organ donation. And as many of us know, all too well, this isnot a mission for the faint-hearted.My journey with CKD began when I was nine years old.I was very young to understand what was happening.I remember being rushed to the hospital. When thediagnosis came through, my dad was shocked andconfused. My dad didn’t understand what kidneydisease was and how this would impact me, so he askedfor a second opinion. This just confirmed the truth. Thetruth that I, his nine-year-old little girl, had CKD.CKD in the early 80s was in its infancy, well that is howI felt. I felt as if I was the only one going through this. Iwent through several surgeries, so I was ready for whatlay ahead. I had a graft made, but in the 80s it wascalled shunt and would be covered with a bandage.I was on haemodialysis (HD) for a few months which Ifound very tough and harsh on my small nine-year-oldbody. But this was the new ‘normal’ for me. I was ondialysis three times a week and my family would take itin turns to take me back and forth from the hospital –this impacted their life too!“If I had that mentality of mistrust,I would not be alive today“In September 1984, I had my first transplant. Thoughthis only lasted around two years, I felt a big differenceand truly realised how dialysis impacted me. I wasback on dialysis, I was given Emla cream to numbmy skin around the graft. I would make sure to putthis on before going to dialysis, so I wouldn’t feel thepain of the needles. I was still very young so this wasrevolutionary for me.In May 1987, life gave me another chance. I got the callfor my second transplant. I was only 12 and my littlebody had been through so much, but despite thechallenges of surgery, I was grateful.Growing with my transplantI felt that my second transplant brought manyopportunities with it, I was able to grow, experiencelife as any other 12-year-old would. I loved my teenageyears and early adult life and enjoyed many holidayswith my sisters.When my second transplant failed in 2004, therewas so much going on in my life, I could not recogniseit. I just accepted it. However, this time, as an adult Iprocessed the situation better than when I was a child.I started HD back in October 2004. My shunt hadgone, and I had a second graft put in my upper rightthigh, which was comfortable for me. I was on dialysisfor 17 years.As a child, I missed a lot of school because of CKD.I feel that having CKD as a young child impacted myadult life and as a person. I was trying to get over a lotand I needed to re-focus. During my time on dialysis, Ifelt the need to help others in my situation.The rebel with a cause (TRWAC)I started volunteering at my local community radiostation in Bristol and developed new skills. I alsodiscovered the issues of blood and organ donationwithin the Black, Asian, and other minority ethnicgroups. I am part of this community and I live with CKD;so why were people afraid?I wanted to raise awareness. This paved the way forme to set up my organisation called The Rebel With ACause (TRWAC).It raises awareness, educates, and encourages peoplefrom my community and others to register for blooddonation and let our loved ones know how we feelabout organ donation. We attend other communityorganisations’ events and host a radio show.www.kidneycareuk.org
27let our community suffer; this will not do our futuregenerations any good. It is a waste of energy. I oftensay that when we are thinking about mistrust, we areonly doing a disservice to our community - a lot of usare dying and undergoing unnecessary suffering.The Peer Educators discuss health inequalities andinterview doctors, nurses, transplant recipients andlive donors on various topics.We were lucky to get funding from NHS Blood andTransplant (NHSBT), the African Health PolicyNetwork and the Quartet Community Foundation.From April 2021 to March 2022, we ran a project called#ujimakeepthebeat to raise awareness of blood andorgan donation. At one of our recent events, held atThe Galleries in Bristol, we signed up 25 people toregister for blood and organ donation - just by having aconversation!“As a community, wemust learn to put thepast aside and look afterour community“This is a slow process, but it is important to continueto raise awareness. In our local community, one of ourPeer Educators speaks Arabic and she visits variouscommunity organisations to educate and answerquestions, giving them the opportunity to digest theinformation and return to sign to up for blood and/ororgan donation.Challenges of living with CKD in a BlackAfrican Caribbean communityIn my experience, there is a lot of mistrust of the NHSwithin my community. There are historical reasons forthis, but these deep-rooted feelings are also down toexperiences of racial discrimination.This is one of the most challenging aspects. Iunderstand these feelings, but I also see that if Ihad that mentality of mistrust, I would not be alivetoday. As a community, we must learn to put the pastaside and look after ourselves. We can no longerMy future and past selfAfter 17 years on dialysis, I was very lucky to get a callfor my third transplant on 19 November 2021. I havebeen through many challenges, and I feel my pastvolunteering with Ujima radio has equipped me to cofundThe Rebel With a Cause alongside my colleagueMakeda. It is my biggest achievement. It is my prideand joy!If I could go back in time and talk to my nine-yearoldself, I would like to tell her not to blame herselffor what’s happened. Stop carrying the burden ofthe unknown. I would like to show her what she hasachieved. I am now stronger, more focused than everbefore and driven to make a positive change!For more information on TRWAC please visitwww.trwac.orgIssue 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 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: 25“One piece of advice she would
- 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
27
let our community suffer; this will not do our future
generations any good. It is a waste of energy. I often
say that when we are thinking about mistrust, we are
only doing a disservice to our community - a lot of us
are dying and undergoing unnecessary suffering.
The Peer Educators discuss health inequalities and
interview doctors, nurses, transplant recipients and
live donors on various topics.
We were lucky to get funding from NHS Blood and
Transplant (NHSBT), the African Health Policy
Network and the Quartet Community Foundation.
From April 2021 to March 2022, we ran a project called
#ujimakeepthebeat to raise awareness of blood and
organ donation. At one of our recent events, held at
The Galleries in Bristol, we signed up 25 people to
register for blood and organ donation - just by having a
conversation!
“As a community, we
must learn to put the
past aside and look after
our community“
This is a slow process, but it is important to continue
to raise awareness. In our local community, one of our
Peer Educators speaks Arabic and she visits various
community organisations to educate and answer
questions, giving them the opportunity to digest the
information and return to sign to up for blood and/or
organ donation.
Challenges of living with CKD in a Black
African Caribbean community
In my experience, there is a lot of mistrust of the NHS
within my community. There are historical reasons for
this, but these deep-rooted feelings are also down to
experiences of racial discrimination.
This is one of the most challenging aspects. I
understand these feelings, but I also see that if I
had that mentality of mistrust, I would not be alive
today. As a community, we must learn to put the past
aside and look after ourselves. We can no longer
My future and past self
After 17 years on dialysis, I was very lucky to get a call
for my third transplant on 19 November 2021. I have
been through many challenges, and I feel my past
volunteering with Ujima radio has equipped me to cofund
The Rebel With a Cause alongside my colleague
Makeda. It is my biggest achievement. It is my pride
and joy!
If I could go back in time and talk to my nine-yearold
self, I would like to tell her not to blame herself
for what’s happened. Stop carrying the burden of
the unknown. I would like to show her what she has
achieved. I am now stronger, more focused than ever
before and driven to make a positive change!
For more information on TRWAC please visit
www.trwac.org
Issue 17 | Summer 2022
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