Kidney Matters - Issue 6, Summer 2019
Kidney Matters is our free quarterly magazine for everyone affected by kidney disease. This issue includes another recipe for our Kidney Kitchen as well as articles about dialysis transport, UK Kidney week, conservative treatment, and an interview with a retiring dialysis nurse after 33 years. 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 over the past year talking to kidney patients on dialysis, asking them what we can do to address this. The response was overwhelmingly ‘improved communication’ on what is going on in the kidney world 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 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.
Kidney Matters is our free quarterly magazine for everyone affected by kidney disease.
This issue includes another recipe for our Kidney Kitchen as well as articles about dialysis transport, UK Kidney week, conservative treatment, and an interview with a retiring dialysis nurse after 33 years.
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 over the past year talking to kidney patients on dialysis, asking them what we can do to address this. The response was overwhelmingly ‘improved communication’ on what is going on in the kidney world 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 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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9<br />
so that it does not recognise a transplanted organ<br />
that is not ‘self’. Obviously, this very small group of<br />
patients is of great interest to researchers tasked<br />
with discovering ways to minimise the sometimesadverse<br />
side-effects of our powerful immunesuppressing<br />
drugs. Ciara was part of this trial after<br />
ceasing all drugs in order to determine if she had<br />
the markers for tolerance*. This was following seven<br />
years on monotherapy (ciclosporin) and two years<br />
completely drug free.<br />
“Our capacity to heal is<br />
extraordinary”<br />
A bout of the flu and sepsis triggered more serious<br />
medical problems for Ciara. Soon her blood<br />
pressure and creatinine levels were rising and<br />
proteinuria (protein in the urine) diagnosed, with no<br />
immediate signs of abating. Her transplanted kidney<br />
was struggling.<br />
Ciara decided that this was the rightmoment to call<br />
time on her frenetic life in the City of London given<br />
her change in kidney function. So, on the crest of<br />
a wave of good will she left the City life behind and<br />
turned her mind, energy and the experience she had<br />
gained over almost two decades to building a life and<br />
career around her real passion – nutrition and yoga.<br />
Her chosen method of dialysis this time has been<br />
(nocturnal) automatic peritoneal dialysis (APD),<br />
which frees up the days for her one-to-one private<br />
yoga and nutrition classes and her group yoga<br />
classes for her extensive list of corporate clients.<br />
Her PD catheter does not hinder her yoga practice,<br />
which ensures Ciara remains at peak cardiovascular<br />
health in preparation for her second transplant.<br />
And her business expands further,<br />
“In February 2018, I became involved in what is<br />
called ‘social prescribing’. There is now, finally a<br />
much-needed shift towards focusing on community<br />
engagement to help heal some of the deeplyembedded<br />
societal issues we face around social<br />
isolation, depression and hopelessness.”<br />
Her work with the NHS is in its infancy and is now<br />
widening to addressing the health of medics. Yoga<br />
classes and raising an awareness of the importance<br />
of good nutrition and an uncluttered mind will, Ciara<br />
believes, improve the mental and physical health of<br />
a nation….one stretch at a time.<br />
* Warning<br />
Do not alter the dose of or stop taking prescribed medication,<br />
or start any alternative, complementary, herbal<br />
or over-the-counter treatment or therapy, without<br />
full consultation with your nephrologist and medical<br />
team. Doing so if you have chronic kidney disease can<br />
be risky and, if you have a functioning transplant, could<br />
result in your transplant failing.<br />
Photography (and front cover) by John Godwin www.johngodwin.co.uk<br />
LEARN MORE<br />
To purchase Ciara’s book ‘Wholly<br />
Aligned, Wholly Alive’ and to read<br />
more on Ciara’s life and work go to<br />
www.whollyaligned.com<br />
You may also like to read our diet<br />
and exercise leaflet available to<br />
download at<br />
www.kidneycareuk.org/booklets
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