KIDNEY
Welcome to the Summer issue...
Hello and welcome to the latest issue of Kidney Life which I hope you will find both interesting and stimulating.
Firstly I must say a very big thank you to everyone who completed our readers’ survey. It’s been very useful understanding your perspectives on our magazine – what you find the most interesting and ideas for what might improve it. You told us that patient stories are the most popular topic so with that in mind please get in touch with me at kidneylife@kidney.org.uk if you’d like to share your experience of living with kidney disease. An article on the survey results appears on page 9.
One of the themes in this issue is holiday travel for people with kidney disease. There’s a reminder of some of the holiday accommodation that’s available through the KPAs and also Felipe’s personal story of travelling around the world on dialysis.
Following recent articles on transplantation we have stories from two altruistic kidney donors which provide a unique perspective, and Melanie’s story about living with a rare genetic disease that affects her kidneys.
In the next issue I’d like to start a regular feature on hints and tips for getting by and managing your health and life. If you have anything that you find helps you that you’d like to share with others, please do let me know.
As always I hope there’s something for everyone in this issue and if you have any comments or suggestions you’d like to make please drop me an email at kidneylife@kidney.org.uk.
Best wishes
Annie Taylor Editor
Error
In the last issue of KL we told Phil and June Rayman’s story, in which I made an error for which I apologise and which I’d like to correct. The 50th anniversary being celebrated in the article was Phil’s 50th year of being on dialysis. Phil and June’s 50th wedding anniversary will be in September this year.
Kidney Donation – The What and the Why from Two Altruistic Kidney Donors
Travelling and Dialysing Around the World
NKF’s Impact in 2024 – What a Year!
The National Kidney Federation Annual Event 2025
The National Kidney Federation in Westminster...
Kidney Day 2025
Holidays and Holiday Homes for Kidney Patients
How Do You Get By?
Well for Early Stage Chronic Kidney Disease
NKF OFFICERS
Chairman – David Coyle
Co Vice Chair – Caryl Bryant
Co Vice Chair – Tarsem Paul
Secretary – Brian Child
NKF TEAM
Andrea Brown – Chief Executive
Pete Revell – Head of Marketing & Fundraising
Donna Blizard – Office Manager
Sharney Warren – Communications and Marketing Officer
Fiona Broomhead – Senior Office Administrator
Joe Rutter – Social Media and Website Coordinator
Heather Mooney – Accounts Administrator
Chris Talbot – Membership Development Lead
Linda Pickering – Helpline Advisor
Stephen Emmerson – Helpline Advisor and Peer Support Coordinator
NKF’s Impact in 2024 – What a Year!
In this edition of Kidney Life, we are proud to present our Impact Report. As we compiled the report it became clear just how much great work we achieved last year – from the many kidney patients we supported to the overwhelming generosity of our supporters. We are truly proud of our accomplishments.
However, 2024 was not without its challenges. Despite providing record support to kidney patients and their families, the NKF faced serious financial challenges. With your continued help, we are hopeful that this will remain an isolated occurrence.
You will notice the 'Become a Member' flyer included in this issue of Kidney Life. For just £3 a month – less than the cost of a coffee – you can join the NKF community and help us continue offering essential support across the UK. As a member, you'll enjoy exclusive benefits, including a 10% off voucher to spend on selected items in our online shop, plus exclusive member discount days and exclusive invites to our NKF special events, along with many other benefits.
I would like to personally thank everyone who has already joined our membership scheme. If you haven’t yet, I warmly invite you to support our mission.
Your membership makes a real difference in creating a brighter future for people living with kidney disease and their families.
Thank you for your ongoing support!
Pete Revell
NKF Head of Marketing & Fundraising
The National Kidney Federation Annual Event 2025
Join us in celebrating kidney health and empowerment this October when the National Kidney Federation is set to host an event that promises to be both insightful and inspiring. The National Kidney Federation’s Annual Event is taking place on the 11th and 12th of October 2025 at the Hilton Hotel near East Midlands Airport DE74 2YZ, and will be a weekend to educate, support and showcase a great community spirit.
We took lots of feedback from those who attended the event last year, as well as others and for the first time the main day of the event is on Sunday. Save the date in your calendars and join us for an unforgettable experience!
Why attend?
This event isn’t just a gathering. it’s a celebration to share knowledge and experiences together as a community.
We will be joined by inspirational speakers
Listen to leading renal experts and hear moving stories from people who have been affected by kidney disease. These sessions promise to be both informative and motivational.
Our event will include an interactive exhibition
Engage with the latest advancements in renal care technology and access valuable support resources. This is your chance to see first hand the innovations that are shaping the future of kidney health.
Connect with fellow attendees, exhibitors and speakers
Share your experiences, meet new people and forge new friendships. The event creates a supportive community where everyone is welcome.
Itinerary Overview
Saturday, 11th October: The event will start with a relaxed social evening, featuring a delicious 2-course buffet and a fun quiz. Please note: If you book a stay at the hotel for the Saturday evening, you will enjoy a complimentary buffet. This is limited to the first 100 people who make a reservation.
Sunday, 12th October: Our main event will be packed with inspiring speaker sessions and an exhibition showcasing the latest in kidney care.
We are thrilled to announce our speaker line up for the upcoming event:
David Coyle, NKF Chair will start our Annual Event with a warm welcome and introduction to the day.
Caryl Bryant, NKF Co Vice-Chair of the NKF and Chair KPA will share insights on ‘Making the Most of Your New Kidney’. Caryl’s eldest son, Ben, became seriously ill in 1986 and was later diagnosed with Goodpasture syndrome. Caryl will discuss Ben’s kidney journey, how a transplant does not limit your horizons and how you can aim for the stars and achieve the extraordinary.
Hear from Suzanne Batte, Paediatric Renal Social Worker of the EMEESY Children’s Kidney Network. Suzanne will explain the role of a social worker and how she supports children, young people and their parents. Suzanne will present a number of case examples to illustrate particular challenges families face.
Oscar Walton, Renal Dietitian will also be presenting a session. Oscar is a kidney dietitian with three years’ experience, multiple awards for abstracts submitted to conferences, and a background in sport nutrition. Oscar will provide a walkthrough on nutrition and kidney disease with a focus on the beneficial dietary changes at different stages of the kidney journey and he’ll highlight what to consider in respect to protein choices.
Stay tuned for more exciting speakers who will be announced soon!
NKF ANNUAL EVENT
Saturday 11th October
Sunday 12th October
Hilton Hotel – East Midlands Airport
EVENT PRICING
Saturday 11th October
SOCIAL EVENING WITH TWO COURSE BUFFET
This is FREE for anyone staying at the Hotel on the Saturday evening.
Please book your free buffet when you book your day delegate place by calling the NKF office on 01909 544999 or via this link: www.kidney.org.uk/nkf-annual-event-2025
HILTON HOTEL ACCOMMODATION
£110 single bed and breakfast, £120 double/twin bed and breakfast (offer includes car parking and VAT). Please note accommodation needs to be booked directly with the Hilton Hotel not via the NKF office, please use this link: www.hilton.com/en/attend-my-event/emahnhn-91m45896dc3-5095-4cd5-a177-78409d619271/
If you would like to stay over on the Sunday evening too, this special rate will also apply.
Sunday 12th October
MAIN EVENT DAY DELEGATE RATE
£55 per person
NKF Members SAVE 10% on the day delegate rate, please call the NKF office (01909 544 999) and state your membership number for your discounted rate. To learn more or to become an NKF Member visit: www.kidney.org.uk/member
If you would like to book your buffet and day delegate you can do so here: www.kidney.org.uk/nkf-annual-event-2025
If you wish to book your places over the telephone, please call 01909 544999
The National Kidney Federation’s Annual Event is a fabulous conference, I enjoyed the exhibition hall, and the talks were very informative.
Attendee from the 2024 NKF Annual Event
Main sponsor for this year is CSL Vifor:
Pictured are guest speakers from last years NKF Annual Event
NKF Kidney Patient Associations' Day 2025
Warm sunny weather greeted everyone attending the NKF’s annual KPA Day at the Arden Hotel in Birmingham on Saturday 5th April. This was another fantastic opportunity for KPA members to meet up, network, share and learn.
David Coyle (Chair, NKF) welcomed everyone attending and this was followed by a minute’s silence to remember family, friends and colleagues lost over the past year.
A special mention was given to Keith Pennington, previous Chair of Hope KPA, who was a regular attendee at KPA day and was usually our photographer for the event.
In a bit of a shake up to previous years, the morning sessions tended first to the business side. The AGM was held first. This included the introduction of the current and new members of the Executive Committee, which will run at full capacity with 16 members. It was announced that Kirit Modi MBE had accepted the invitation to continue in his role as the NKF’s Honorary President. The Council Meeting followed with key strategy updates given by David Coyle and a reflection on the NKF’s work over the previous year by Pete Revell, Head of Marketing and Fundraising, NKF.
After lunch, Chris Talbot, Membership Development Lead, NKF explained how the afternoon session would run, followed by a fun game of KPA Bingo, where different facts were given about KPAs from around the UK.
There were also breakout groups in the afternoon, hosted by NKF team members. The breakout session topics were chosen by the KPAs, this year we discussed:
• Membership – Hosted by Chris Talbot (Membership Development Lead) and Fiona Broomhead (Senior Office Administrator)
• Marketing and Social Media – Sharney Warren (Communications and Marketing Officer) and Alex Saul (Policy and Public Affairs Manager)
• Joint Fundraising – Pete Revell (Head of Marketing and Fundraising) and his scribe Mike Sinfield from Six Counties KPA
All sessions were very engaging, allowing interesting discussion, ideas and points raised by everyone. All points were summarised and fed back to everyone after which David Coyle closed the day thanking everyone for their attendance and for their contribution to the day.
Feedback has been very positive, with everybody attending enjoying the day, including the food! Particular highlights from the day included the variety of the topics discussed in the breakout sessions, the handouts and even the KPA Bingo! Feedback from this year will influence next year’s KPA day, leading to another successful event.
NKF Officers:
David Coyle – Chair
Caryl Bryant – Co Vice Chair
Tarsem Paul – Co Vice Chair
Brian Child – Secretary
The following people are Executive Committee Members for 2025:
Ros Aird – Lister Area KPA
Sarita Khurana – West London KPA
Charleen Sepede – Friends of Derriford KPA
Mike Sinfield – Six Counties KPA
Jose Rico Diaz – Six Counties KPA
Mike Savage – Kernow KPA
Asif Zaman – Guy’s and St Thomas’ KPA
Soumeya Bouacida
Geoff Downes
Patricia Gooden – Royal Free Hospital KPA
Primrose Granville
Judith Newcombe – North Staffs & South Cumbria KPA
NKF Chairman David Coyle answering delegate questions
The National Kidney Federation in Westminster - the summit on increasing home dialysis in the UK
We are pleased to announce the Summit on Increasing Home Dialysis in the UK is scheduled for 15 May 2025 in Westminster, and will bring together parliamentarians and other key stakeholders from across the kidney care community.
The Kidney Summit represents the culmination of our longstanding home dialysis campaign, which has advocated for expanded access to this life-changing treatment option. Since launching the campaign in 2020, we've highlighted how patients who dialyse at home experienced significantly better outcomes during the COVID-19 pandemic, with lower infection and mortality rates compared to those dialysing in-centre. Our report made seven key recommendations for increasing home dialysis provision across the NHS, and the Summit will now bring together stakeholders to evaluate progress, address persistent barriers, and establish next steps for implementation.
Particularly concerning has been our campaign's revelation of stark inequalities in home therapy access –with rates in England's least deprived areas significantly higher than in the most deprived areas. The Summit will serve as a platform to address these disparities head-on and develop actionable strategies to ensure all kidney patients, regardless of socioeconomic background, can access the benefits of home dialysis.
The Summit will focus on developing a ‘Manifesto for Change’ and will challenge existing approaches to treatment for kidney failure. This important event aims to address significant inequities in the provision of home dialysis, particularly for patients from ethnic minority backgrounds and those from lower-income communities.
This gathering provides a timely opportunity to establish a robust foundation for policy development, with a clear focus on addressing health inequalities in kidney care and improving access to life-changing treatments for all patients regardless of their background or location.
The All-Party Parliamentary Kidney Group (APPKG)
With all four APPKG officers now confirmed, we have scheduled an inaugural Westminster meeting to engage directly with the new government on behalf of kidney patients across the UK. The group will build upon the groundwork established at the May 15 Summit on Increasing Home Dialysis in the UK, advancing recommendations and a manifesto for change.
The APPKG will build upon the groundwork we will do at the upcoming Summit on Increasing Home Dialysis in the UK in May. With chronic kidney disease affecting more than 10% of the UK population and dialysis representing a significant burden for patients, this parliamentary group provides a crucial platform to advocate for improvements in kidney care. This renewed parliamentary engagement comes at a critical time, as kidney disease rates continue to rise and health inequalities persist across different communities.
With the APPKG we will work to ensure that the voices of kidney patients are heard at the highest levels of government, driving meaningful policy changes that improve outcomes and quality of life for everyone affected by kidney disease.
This parliamentary group provides a crucial platform to advocate for improvements in kidney care, particularly addressing inequities in home dialysis provision and ensuring patients have greater control over their treatment options. Through the APPKG, kidney patients' voices reach the highest levels of government, driving meaningful policy changes. We will report back on the APPKG Summit in the next issue of Kidney Life.
World Kidney Day 2025
This year’s World Kidney Day (WKD) was on Thursday 13th March. The NKF along with the other kidney charities in the UK – Kidney Charities Together – worked to raise awareness of kidney disease as part of their annual campaign.
The campaign – Don’t Kid Yourself challenged myths about kidney disease and shone a light on facts. The WKD UK website had lots of useful materials including a poster with myths and facts to share, a factsheet on kidney disease, the WKD logo and printable kidneys to help raise awareness.
Many of the Kidney Patient Associations across the UK worked hard to spread the word about the importance of kidney disease in their community. Here’s a snapshot of their activity:
• South Eastern KPA (SEKPA) had a stand in the foyer of the Royal Sussex County Hospital, Brighton. The staff had formed a band and performed a set to support WKD.
• Coventry & Warwickshire KPA were in Asda in Leamington Spa. Grace Newman and Sangheeta Kaur Singh spent the Saturday talking to shoppers, handing out kidney information and balloons for the children.
• North East KPA’s (NEKPA) stand at the James Cook Hospital in Middlesbrough was full of NKF leaflets and WKD campaign information.
• Kernow KPA – Mike and Sharon handed out lots of NKF leaflets to help spread the word about the importance of the day at Royal Cornwall Hospital, Truro.
• Bradford KPA – Sofia, Michaela, Doreen and Kym spent the day at St Luke’s Hospital in Bradford with a tombola, lots of prizes and important information on kidney disease.
• Bristol Area KPA - John and Vicky Gardner and Anne and Andy Strange raised awareness of WKD at Southmead Hospital.
• North Staffs & South Cheshire KPA (NSSCKPA) had a stand at the Royal Stoke Hospital with renal staff members. Their poster was the focus for a great display of NKF leaflets and they spoke with people about their general wellbeing and health. The day was such a success they’re planning a similar event at Stafford, Leighton, and Stoke again later this year.
• Lister Area KPA, centred on Lister Hospital in Stevenage, Herts celebrated WKD with WKD Teddies which provided a focus for fundraising in all of the units. Over £1,000 was raised through raffles, tombola and donations. Tarsem Paul, NKF Co-vice Chair and Chair of the Bedford Hospitals ODC took part in a series of events during the week promoting organ donation.
• West London KPA (WLKPA) raised awareness of WKD at the Hammersmith Hospital, giving away NKF leaflets, WLKPA goodies and information about WKD.
• Royal London Hospital KPA – Glenn Maloney and Marie Niven promoted WKD on their stall.
• Sheffield Area Kidney Association (SAKA) collaborated with the renal research team at Sheffield Teaching Hospitals to create a display at Northern General Hospital. They handed out WKD leaflets and information out about SAKA. In the evening they had an online event with healthcare professionals and a kidney transplant recipient with his living donor contributing. SAKA also funded a successful four-week campaign with posters promoting organ donation on local buses.
Thanks to everyone who took part and worked hard to raise awareness on such an important topic. World Kidney Day is a great annual event that increases understanding of kidney disease and its impact.
Kidney Life Reader Survey
A big thank you to all 96 people who completed the reader survey which was highlighted for you to complete in the last issue and through NKF’s social media activity.
It’s always helpful to get information and feedback from our readership so that we can be sure we’re writing about the things you are interested in and that we can respond to your suggestions for improvement. Without your views we are guessing that we’re getting it right. Through the survey we can be sure we are.
Overall there were few surprises, lots of compliments and few complaints. All comments are being considered and will inform future content. If you missed the chance to complete the survey you can email at any time to have your say at kidneylife@kidney.org.uk
This is what you told us
What is your preferred way to read Kidney Life?
Which topics do you most like reading about?
What would improve Kidney Life?
Responses included:
• Fewer technical articles
• More advertising
• Less advertising
• Too maudlin
• Articles on ageing and kidney disease
• Profiles on our amazing NHS clinical teams
• Articles to support mental health
• Just more content!
• Keeping fit / sport
• Holidays research and innovation
"A very interesting and reassuring publication."
"Usually a good read though I don’t always understand the technical stuff."
What other topics would you like covered in Kidney Life?
10 respondents (10%) answered 'transplant' for this question
What are your thoughts on Kidney Life…
“Very interesting and affirming.”
“It’s a good read, lots of positive stories.”
“It is informative and quite interesting, but would benefit from a little more light heartedness.”
“Kidney Life needs more professional input. Its advice needs to focus on CKD stages 3 and 4 - and far more advice on low protein diet.”
“Kidney Life is a good way to keep up to date with medical developments, issues and news surrounding kidney disease, treatments and transplantation. It keeps me in touch with the community and any progress or issues that might impact my life as a transplant patient.”
“Not just about kidney donation and transplant. A bigger picture about self-help and earlier stages of CKD.”
“Always interesting.”
So the conclusion from the survey is that we mostly get the content and the balance of articles about right. Kidney disease is a serious subject but we aim not to be too maudlin or to be too light-hearted. We recognise that sometimes we don’t always get it exactly right for everyone. After all you can’t please everyone all the time but we aim to please most people most of the time.
We will take a detailed look at all the responses and will take action accordingly. This is your magazine so your comments and feedback are always welcome. Email kidneylife@kidney.org.uk
"I find Kidney Life extremely helpful and informative. As someone who is likely to need dialysis in the fairly near future it's reassuring to read the stories of other dialysis patients and to learn how they've adjusted to their new circumstances."
Patient Story Melanie Heckles
Melanie lives with a rare genetic kidney disease Nail-patella Syndrome, which is a condition that affects the development of nails and bones. The syndrome is caused by changes in the LMX1B gene and is inherited. Here is her story in her own words.
"We've traced the gene back as far as my grandma who we now know died of kidney failure and in childbirth after five children. She passed the gene on to two of her sons, one of whom was my father. My uncle didn’t have any children but of course my dad had me and I’m one of seven! Me and two of my sisters had the gene and surprised the geneticists because the gene crossed genders – from mother to son to daughters, which we understand is very unusual.
As a child I was unaware that I had the gene. When my oldest sister Elaine started having symptoms when she was 15 it was put down to the fact that she’d had rheumatic fever as a child. When her kidneys failed at the age of 30 her previous illness was blamed. My brother donated a kidney to Elaine. Gail, my other sister started with symptoms and when she was pregnant, her kidneys started to fail. I thought to myself once I turn 18 I will be able to give her a kidney, but I was told that I wouldn’t be able to because I had the same condition. I didn’t think much about it at the time and I was kept an eye on with annual blood tests. I was told I would never be in the same situation.
When I was pregnant I was passing blood and protein but with no other symptoms and I was told there was nothing to worry about. My kidney function was high and they kept a very close eye on me. And then I got swine flu, and I thought I would never recover from it. I was working full time, running around after the little one and I was just exhausted. In 2011 my kidney function dropped just a bit, I was then referred to the kidney specialist, although no one was too concerned. And that's when the geneticists got involved and said there's definitely a link here.
Within a few weeks I was diagnosed. One consultant asked me what type of dialysis I would have. This was a major shock and I asked him – you mean if I ever have to go on it? He told me I should already be on it.
I was completely shocked and had no idea. And I was at that appointment on my own. Normally my husband would have been with me. I can’t remember the drive home. Apart from the exhaustion and getting up a couple times during the night I had no other symptoms. Then everything happened really fast.
So, this thing, my sisters and I have is not great. But we do feel we’re pretty lucky as a family because with this gene there can be very serious disabilities. You can be born with no kneecaps, other missing joints, disfigured nails and a host of other complications. We have just had to live with the kidney failure as we got older.
Melanie, Jessica and Ayda
I started on peritoneal dialysis because I was terrified of having a fistula. Then I had an unfortunate incident where my peritoneal membranes split, so I wasn't able to carry on and had no choice but to go to haemodialysis which I've been on ever since.
I was asked if I’d like to dialyse at home and at first I thought not a chance because I didn’t even want to look at my fistula, let alone touch it! And then I met a fantastic home dialysis nurse, Catherine who is absolutely brilliant. She invited me to a meeting and when I learned about the benefits of home dialysis, I knew I had to give it a go.
I became an advocate for the NXStage machine and travelled all over showing people how to use it and the benefits of it. And then they pulled that machine and I had to go on the Quanta, which is a shame because it’s not portable.
But overall, really, I just keep on thinking to myself that on good days, I'll do as much as I possibly can. And then on the bad days, I can sit back and at least I've got those memories from all the good days to think about. And we've now got a granddaughter, Ayda who has just turned one year old, and she's absolutely amazing and I feel I have something to fight for – I'm not going anywhere!
I have 100% antibodies and I’m hoping that new drugs will mean that I may be able to have a transplant in the future which would be amazing. My sisters are no longer with us but we were very close and supported each other. I think they were upset that I was going to go through the same that they had.
It was scary for us all. But I am grateful for my daughter, Jessica because she was a miracle baby as I ‘d been told I’d never be able to have children. So far Jessica has chosen not to be tested for the gene. She has no evidence that she has it and will get tested sometime in the future. I think that’s wise because she doesn’t want to put her life on hold.
The thing I would say to anybody who's new to dialysis or kidney failure is to try and live all your good days as best as you can. Because, believe me, when you're not feeling very well those good day memories really do keep you going. "
Melanie with daughter Jessica, husband Brian and baby Ayda
Altruistic Kidney Donation
The What and the Why from Two Altruistic Kidney Donors
What does Altruism mean?
1. The principle or practice of unselfish concern for the welfare of others.
2. The philosophical doctrine that right action is that which produced the greatest benefit to others. (Collins English Dictionary)
Or simply – the fact of caring about the needs and happiness of other people and being willing to do things to help them, even if it brings no advantage to yourself.
Simon Wills donated a kidney to an unknown recipient following the serious illness his daughter Olivia had experienced.
Simon, who has lived in Cornwall all his life, was inspired to become an altruistic kidney donor after his daughter Olivia's critical illness in 2019. Olivia was 19 when she was rushed to Derriford Hospital with a severe infection that led to acute liver failure. She was then transferred to King's College Hospital in London and placed in a medically induced coma for nine days.
During this difficult time, Simon and his family were uncertain if she would survive, and if she did, whether she would suffer brain damage. Miraculously, Olivia recovered and has since trained to become a fully qualified paediatric nurse, working now at Derriford Hospital.
Although she initially might have needed a donor herself, it was the care that Olivia received and her recovery that motivated Simon to donate a kidney to help someone else in need. He saw his donation as a "small down payment" on the large debt of gratitude he felt towards the medical team who saved his daughter's life. The experience profoundly changed Simon's perspective, making him appreciate life more and want to give something back.
He told us, “I thought that although Olivia had recovered, donors are still needed. I’d always thought about being a donor and this gave me the kick I needed to actually do something about it. I think in between making the initial inquiry about donating in 2019, they actually removed the kidney in November 2021 with delays caused by Covid.”
Simon’s surgery triggered two more operations and his kidney went to a recipient in Edinburgh. Five days in hospital were followed by eight weeks off work recovering.
Simon emphasised the emotional and physical challenges of the surgery but expressed his immense gratitude to King’s College.
To anyone thinking about becoming an altruistic donor, this is Simon’s message. “Ultimately, if you are thinking about it, look into it. Do your research. It's something I would highly recommend. Obviously, it's not for everyone to have a major organ taken away – it’s quite a big thing. But, you know, after what they did for Olivia, I was just so grateful - I would have done anything”.
Simon and Olivia have since continued to support King's College Hospital through charity walks and fundraising events, with Olivia running the London Landmark half marathon this April to further support the hospital that saved her life. To date they have raised over £2000.
Simon post op Olivia at the finishing line
Edward Tranter’s Journey to Altruistic Kidney Donation
Edward, a 25-year-old from Wisbech, Cambridgeshire, shared his journey of altruistic kidney donation in our second story of giving the ultimate gift.
Edward was raised by his mum and studied philosophy, politics, and economics at Swarthmore College in Pennsylvania. It was while he was there that Edward met Abraham, a young student who was in the headlines for donating a kidney altruistically. Edward was inspired by Abraham and made efforts to do the same when he returned to the UK. You cannot donate a kidney here until you have turned 25 and so in October 2024 just after his twenty-fifth birthday, Edward began contacting hospitals about donation and chose Guy’s Hospital.
Edward found the physical and psychological screening process less intense than he initially imagined. During this time he learned about kidney disease and dialysis and the statistics relating to the success rates of kidney donation. As a fit young person Edward noted the clinicians’ positive reactions to his healthy condition.
to find meaning in life. As a non-religious Quaker his beliefs and values are based on public service, and this is reflected not only in his altruistic kidney donation but in his profession as a senior parliamentary assistant to an MP in the House of Commons: a job which he enjoys immensely.
A recipient for Edward’s donated kidney was identified quickly and Edward had his surgery in February of this year. Edward’s mum and sister were initially concerned for him because he hadn’t shared with them his plan to donate a kidney until he got the call for surgery. But ultimately they were hugely supportive and proud of him. With mum and sister looking after him, Edward’s recovery was quick – he was home after three days and returned to work two weeks later. He knows nothing about the recipient except that the transplant was successful.
Edward’s motivation for becoming an altruistic donor is influenced by his philosophical background and desire
Reflecting on the risks of donating a kidney, Edward said he felt the risks were manageable for a young and healthy person. He emphasised the importance of understanding the statistics and the well-regulated process of kidney donation.
Edward’s advice to anyone thinking about becoming a donor is to do research and reach out to friends and family for support. He found the whole experience well-regulated and very supportive – from his family and friends to the clinical team who looked after him.
Edward expressed his willingness to go through the process again if it were possible, which, given he’s already given someone the gift of life, makes this young man really quite remarkable.
Best Foot Forward Challenge for 2025
Step Up for a Great Cause
Join the Best Foot Forward Challenge to support kidney patients across the UK.
Are you ready to make a difference this June by taking a journey of 70,951 steps to support kidney patients and their families? This exciting fundraising activity, organised by the NKF, aims to raise much-needed funds to continue and expand our free patient support services.
Taking Part
Whether you're a solo walker or prefer a team walk, the Best Foot Forward Challenge is flexible to fit your lifestyle. You can complete the steps in a week or spread them out over the month. It's all about raising funds and awareness in a way that works for you.
Getting Started
To join in sign up via our website or call the NKF office on 01909 544999 and start fundraising by setting up your own JustGiving account.
When you've raised £10.00 in sponsorship, you'll receive a FREE challenge t-shirt to proudly wear as you step out!
Make a Difference
Every step helps brings us closer to supporting the 70,951 individuals in the UK who rely on renal replacement therapy.
Join the challenge today and help us take steps toward a better future for kidney patients: www.kidney.org.uk/bff2025
Bookdialysis:
Bookdialysis.com opens up a world of possibilities for those who require regular treatments to maintain their health. No longer confined to their local dialysis center, travellers can now plan vacations, business trips, and adventures without worrying about compromising their health care needs. Through a simple 3 steps process, travellers can find clinics at their destination, see real availability of slots and book their treatments, everything for free.
With a network of more than 820 clinics in 50 countries and 370 cities, bookdialysis has transformed the way individuals with kidney disease approach travel, offering newfound freedom, flexibility, and opportunities for exploration. With direct access to dialysis clinics, and a supportive community, CKD travellers can now embark on adventures with confidence, knowing that their health needs will be met wherever their travels may take them. So, whether it's a cross-country road trip, an exotic international getaway, or a weekend retreat in the mountains, bookdialysis enables individuals to embrace the world without boundaries. Find out more at www.bookdialysis.com
Eating Well for Early Stage Chronic Kidney Disease
Your diet plays a key role in supporting your kidney health. While dietary needs can vary from person to person, making thoughtful food choices can help protect your kidneys and improve your overall well-being.
Why Diet Matters: Your kidneys play a vital role in filtering waste products and excess fluids from your body. In the early stages of Chronic Kidney Disease (CKD), your kidneys may still function well enough to manage these tasks. However, some changes to your diet can reduce strain on your kidneys, slowing disease progression and helping you feel your best.
Key Dietary Considerations
1 Focus on Healthy Eating
A balanced diet rich in vegetables, whole grains, and lean proteins can support overall health and kidney function. Plant-based proteins such as beans, lentils, and tofu provide valuable benefits; they are naturally high in fibre, lower in saturated fat, and can reduce the risk of heart disease. Pulses, beans, and soy products are excellent choices as part of a balanced diet. Choosing whole, minimally processed foods not only supports kidney health but also improves heart health, which is important as people with CKD have an increased risk of cardiovascular disease. Including a variety of colourful fruits and vegetables ensures you get a wide range of vitamins, minerals, and antioxidants to support overall health. Following the Eatwell Guide can help ensure your diet is balanced and nutritionally complete.
2 Reduce Salt Intake
Eating too much salt can raise your blood pressure, which puts extra strain on your kidneys. Try to reduce your intake by cooking at home using fresh ingredients, and avoid adding salt to your food during cooking or at the table. Instead, flavour your food with herbs, spices, garlic, and citrus juices such as lemon and lime. Be cautious with salt substitutes like LoSalt, as these often contain potassium chloride, which may not be suitable for some people with CKD. If you choose to eat foods that are naturally high in salt, such as cheese or processed meats or condiments, keep portions small and enjoy them occasionally rather than regularly.
3 Maintain a Healthy Weight
Being overweight can increase your risk of worsening kidney disease and other health issues such as diabetes and heart disease. Balanced meals with appropriate portion sizes can help support weight management. Choosing fibre-rich foods, such as whole grains, pulses, and vegetables, can help you feel full for longer, making it easier to manage your appetite. Additionally, incorporating small amounts of healthy fats like those found in nuts, seeds, and olive oil can provide essential nutrients while helping you feel satisfied.
4 Stay Active
Regular physical activity can improve your overall well-being and support a healthy weight. Physical activity can also improve muscle strength, mental well-being, and heart health. For those who are new to exercise, starting small with activities like gentle stretching or short walks can help build confidence and stamina over time.
5 Avoid Smoking and Excess Alcohol
Smoking can worsen kidney disease and increase the risk of heart problems. Reducing alcohol intake to within government guidelines (no more than 14 units per week) is also important for kidney and overall health. Alcohol can increase blood pressure, which can put extra strain on your kidneys.
6 Limit Ultra-Processed Foods
Ultra-processed foods are often high in added salt, sugar, unhealthy fats, and additives that may need to be limited in kidney disease. These can include potassium and phosphate additives, which may not be suitable for some people. Examples of ultra-processed foods include ready meals, packaged snacks, and processed meats. Cooking at home with fresh or minimally processed ingredients is encouraged.
Understanding Protein Needs: Protein is essential for building and repairing tissues, maintaining muscle strength, and supporting your immune system. However, the amount and type of protein you consume are particularly important if you have CKD.
It's important to avoid excessive protein intake, as this can accelerate kidney function decline. On the other hand, very low-protein diets are only recommended under specialist supervision and may require amino acid supplementation, which is not widely licensed in the UK.
International guidelines now recommend including more plant-based proteins than animal proteins due to their added fibre content. Plant-based proteins such as beans,
lentils, tofu, and chickpeas also produce fewer waste products than animal proteins, reducing the workload on your kidneys.
For those in the early stages of CKD, following the Eatwell Guide recommendations for protein portions is appropriate. This encourages a balance of protein sources and promotes incorporating plant-based options alongside traditional choices.
Understanding Potassium and Phosphate Restrictions:
It's important to know that potassium and phosphate restrictions are rarely needed in the early stages of CKD, and outdated advice suggesting otherwise is not supported by current evidence. Potassium and phosphate are essential nutrients that play important roles in your body — potassium helps regulate your heartbeat and muscle function, while phosphate is crucial for strong bones and energy production. In early CKD, unnecessarily cutting back on these nutrients may reduce your intake of healthy foods like fruits, vegetables, and whole grains.
In later stages of kidney disease (e.g., stages 4 or 5), reducing potassium and phosphate intake may be advised if blood tests show raised levels. However, the focus should first be on limiting potassium and phosphate additives in processed foods and drinks rather than cutting out healthy options like vegetables, fruits, whole grains, and pulses.
Summary: In the early stages of CKD, focusing on healthy eating, maintaining a healthy weight, staying active, and limiting processed foods are key steps to supporting your kidney health. Increasing plant-based proteins in place of animal proteins can offer additional benefits for slowing kidney disease progression as well as reducing inflammation, and improving heart health. Potassium and phosphate restrictions are generally unnecessary unless blood tests indicate raised levels. In those cases, advice from a kidney dietitian should be sought, with the goal of reducing processed food additives as the priority. By adopting these healthy lifestyle habits, you can help protect your kidneys and your overall well-being.
Angeline Taylor, Lead Renal Dietitian
Royal Devon University Healthcare NHS Foundation Trust and Chair of the British Dietetics Association Kidney Dietitian Specialist Group
Travelling and Dialysing Around the World
Many people living with kidney disease are fearful of travelling for a whole host of very valid reasons. But travel is still possible. I recently interviewed Felipe Almeida who lives in Lisbon, Portugal. Felipe has lived with kidney disease since the age of 12 and he’s never stopped travelling. His story is fascinating.
Tell us a bit about yourself please, Felipe
I am 36 years old and my work involves producing content for the internet about diaysis and family travel. Catarina and I have three children - Guilherme is 7 years old, Manuel is 4 years old and Vasco is 3 years old.
At the age of 12 I was hospitalised due to a bout of flu that wouldn't go away. They suspected that something was wrong with my kidneys and after tests it was realized that I had IGA Neuropathy. I only started dialysis in April 2017.
When did you first realise that you would be able to travel and where did you go?
When you start dialysis, it is very important that you have the opportunity to ask questions about the disease, the treatment and you want to know more about what dialysis is. And that's what I did, with the nursing staff and doctors I always asked everything. One day they told me that it was possible to continue travelling, working and have a normal life. So I decided to go to the Czech Republic because it was close to Portugal and just a few hours away by plane and I realised that dialysis was really the same. Only the location changed.
I was very well received and this gave me the confidence and security I needed to explore more. In April 2018 I went on my first big trip where I spent two weeks on vacation in Italy – Sicily. And from that trip onwards I was sure that this was the world I wanted to explore.
Were you nervous on your first trip?
There is always a fear of the unknown and at that time, people didn't talk about holidays and dialysis like they do today. But when I realised that the treatment, the machines and everything were the same, I felt quite confident and safe to explore more.
Since that first trip, where else have you travelled to?
I've been to four continents and visited more than 40 countries and I’ve done dialysis in each country.
1. North America, Central America and South America (Brazil, Colombia, Mexico, Cuba, Bahamas, USA, Canada).
2. Europe – Spain, France, Italy, Germany, Sweden, Denmark, Finland, Greece, North Macedonia, Poland, Hungary, Czech Republic, Serbia, Netherlands, Bulgaria, Hungary, Turkey.
3. Africa – Morocco, Cape Verde, Tanzania, South Africa, Egypt, Seychelles.
4. Asia – UAE, Israel, Thailand, Indonesia, Malaysia, Singapore, Japan, Taiwan, Maldives, Sri Lanka.
What’s the best thing for you about travelling?
Travelling for me is being able to get to know new cultures, religions and connect with the people who live in this world. It is very important for us to be able to get out of our daily lives and travel, relax and even go on an adventure. And of course to enjoy time with our friends and family.
What would you say to fellow kidney patients who are too worried to travel?
It is very important to feel safe when travelling. I always start by advising people to take short trips within their own country, to other clinics, then choose a country a few hours away from 'home' and from there, when they feel confident and safe, explore the world.
Where do you plan to go next?
Possibly a new country. Tunisia – Djerba.
Overall, what are the benefits of travelling for you?
Travelling shows me that everything is possible, even with a medical condition. We are able to overcome ourselves and live life to the fullest. There is no greater happiness than staying alive.
With many thanks to Felipe for telling us of his experiences and to Catarina and the children for allowing use of the images.
Holidays with Dialysis – an NKF Webinar
NKF has organised an informative webinar on travelling on dialysis. The online event is on Wednesday 4th June at 5pm and you can find out more about the logistics and important things to think about when considering travelling on dialysis.
To reserve your free place on the webinar visit: www.kidney.org.uk/Event/nkf-webinar-series
Holidays and Holiday Homes for Kidney Patients
Kidney patients, like everyone else, deserve the opportunity to relax, recharge, and experience new environments. Taking a break from daily routines can greatly improve mental and emotional well-being, which is just as important as physical health.
Whether it's a short weekend getaway or a well-planned extended trip, taking time off helps kidney patients and their caregivers regain a sense of normality, reconnect with loved ones, and make meaningful memories. With the right preparation and medical support, travel can be both safe and enjoyable for those managing kidney disease.
We're excited to showcase three Kidney Patient Associations in the UK that offer holiday homes for patients, caregivers, and their families. If you're planning a getaway this year or next, be sure to check out these options for an affordable and relaxing break.
Dudley KPA
Dudley KPA are the proud owners of two large, static holiday caravans on very good coastal sites for patients and their families to use from April to October each year. They are sited at Haven Holiday Village at Burnham-on-Sea in Somerset and Hoburne Devon Bay at Goodrington in Devon. Both sites have plenty of facilities for entertainment, swimming and other sports and children’s activities, plus restaurants, bars and shops. There are also many lovely places to visit around both areas. Up to six people may stay at any one time. If you are interested in holidaying in one of the caravans, please call or email Judith for more information about prices and availability: Judith Sidaway (Holiday Administrator) Tel. 01384 424456 or 07949709785 or email judithsidaway@aol.com.
Humberside KPA
Humberside KPA has a 6-berth caravan based at Skirlington Holiday Park, North of Hornsea and with easy access to Bridlington and Scarborough. There is an indoor swimming pool, bar, restaurant and lots of on-site entertainment. There is also a car boot sale and market every Sunday.
If you are interested in taking a holiday here, please call Sally Hill for more information about prices and availability on 07813 437 258.
Bartlen Kidney Patients Holiday Dialysis Trust
Bartlen Kidney Patients Holiday Dialysis Trust has a spacious 3 to 4 bedroomed town house in the coastal town of Broadstairs, Kent. The house is a few minutes’ walk from the beautiful beach and lively high street.
There is parking for one car in front of the house and any other cars can be parked in the adjacent public car park. For more information regarding availability and pricing, contact the Bartlen team by email at bartlen1@outlook.com.
Dialysis Away From Base (DAFB)
Since haemodialysis patients require treatment at least three times per week and peritoneal dialysis is needed daily, travelling necessitates planning and arranging dialysis while away. This is known as Dialysis Away From Base (DAFB) and requires advance preparation to ensure all necessary arrangements are in place. It’s important to discuss your plans with your kidney team and provide them with as much advance notice as possible. DAFB requires additional preparation, such as coordinating hospital paperwork and securing available dialysis slots at your travel destination.
How Do You Get By?
Hints, tips and hacks for helping get through life’s challenges.
Living with kidney disease isn’t easy. At the NKF’s patient event in October last year, renal social workers Jayne Davies and Alison Richards gave the audience a few hints and tips which they know can help and support people with kidney disease.
Featured here are three of their top tips for people living with renal disease but what would yours be? What life hacks or tips could you pass on to others that would help them get through some of the many challenges kidney disease throws at them?
If you have any you’d be happy to share, email them to kidneylife@kidney.org.uk and we’ll highlight them in the next issue. It might be the simplest thing that makes a difference to you – anything that helps get you through and that you’re happy to share.
To kick
us off here
are three tips from the Renal Social Work Group
Connect with the many amazing kidney patient support groups, nationally and locally. Hearing from other kidney patients and their families helps people feel less isolated and anxious. Many great things have come from making that initial difficult step, many groups have developed and lifelong friendships made.
When navigating disability benefits, complete and keep a 14-day diary if you can do so, looking at what you struggle with everyday – personal care or daily living tasks and mobility. From getting up to going to bed, include how long each action takes. For example, if you suffer pain during the task or become breathless and have to rest or stop record it. If this is not possible just write down what you can, or if able, use your phone voice recorder. Include timelines and any form of help you receive whether it be from a person or an item of equipment.
If there isn’t a psychosocial presence (social worker, psychologist, counsellor) at your renal unit, contact your local and national kidney services such as: NKF, KCUK, Kidney Wales; Popham Kidney Support Wales who have a wealth of knowledge and experience. Your local Citizens Advice Bureau, AGE UK; SHELTER and Benefits Advice centres can help you with more specific issues.
Email your tips to Annie at kidneylife@kidney.org.uk
