Kidney Life Winter 2023 by National Kidney Federation

KIDNEYLIFE WINTER 2023 ISSUE

The magazine of the National Kidney Federation

Dialysis patient gives birth to miracle baby Raegan Mlynek, a Sheffield Nurse tells her amazing story

Charity Nos. 1106735 SC049431

News

Your Stories

Fundraising

New NKF Team Member, Mike May

NKF Annual Patients' Event 2023

Christmas Gifts and Goodies

Page 03

Page 10

Page 16

Editor’s Note

In this ISSUE... Welcome YOUR STORIES to the Winter issue of NEWS Kidney Life

06 The Gift That’s Kept On Giving 11 To Drink or Not to Drink... 12 Nurse Gives Birth to Miracle Baby 18 From Paediatric to Adult Kidney Care

Hello and welcome… It’s that time of year again. Not wishing to be Scrooge about it all, but I did see Christmas cards in a certain shop in August this year, before the children had even gone back to school. So, aside from a reminder of where to buy your cards and calendars, and the Christmas Star this year – we’ve gone for a late autumn theme rather than with the ‘C’ word theme! Attending the NKF Annual Patients' Event this year (my first) was both uplifting and educational. And of course, celebratory as we cut and then ate the 45 years anniversary cake. As you’d expect there’s lots about the event in this issue. And I make no apologies for the fact that we have more patient stories than we usually publish. I know these stories are popular with our readers and these are pretty special stories – showcasing as they do the amazing hope, determination, strength, kindness and gratitude that so often comes from people living with kidney disease and their families, carers, friends and renal teams who care for them. I hope you enjoy the stories. Feel free to send yours if you’d like to share it in a future issue. Please email me at kidneylife@kidney.org.uk and we can arrange to get your story included. Celebrating an anniversary is always a chance to look forwards as well as back. In the last issue we looked at the NKF and how it has evolved over the years as well as previous issues of Kidney Life. For this issue, we’ve looked at renal care in the past and what’s happening now in the world of research for the future. It’s a fascinating topic. Enjoy the season of goodwill with your loved ones and stay warm as winter approaches – and yes, happy Christmas when it finally gets here. Maybe I’m not such a Scrooge after all!

04 NKF Annual Patients' Event 2023 08 NKF National Home Dialysis Peer Support Service 10 Organ Donation: Register Your Decision 14 The History and Future of Kidney Disease and Care 22 Planning Your Legacy

FUNDRAISING

16 Donation Leaflet / Christmas Cards, etc

PUZZLES

20 Word Search

HEALTH & NUTRITION

23 Lemon Drizzle Cake

NKF OFFICERS Chairman – David Coyle Co Vice Chair – Caryl Bryant Co Vice Chair – Tarsem Paul Treasurer – Mike Sinfield Secretary – Brian Child

NKF TEAM Andrea Brown – Chief Executive Pete Revell – Head of Marketing & Fundraising Mike May – Membership Development Officer Sharney Warren – Communications & Marketing Officer Donna Blizard – Office Manager Fiona Broomhead - Fundraising and Office Assistant Heather Mooney – Accounts Administrator Linda Pickering – Helpline Advisor Stephen Emmerson – Helpline & Office Administrator

Best wishes Annie Taylor Editor

Registered Office:

Novartis supporting Kidney Life

The Point, Coach Road, Shireoaks, Worksop, Nottinghamshire S81 8BW T: 01909 544999 E: nkf@kidney.org.uk

Winter 2023

Introducing our new NKF Team Member, Mike May We are delighted to welcome our new Membership Development Officer, Mike May, to our team. Mike brings a wealth of experience and dedication to his new role, having spent years supporting those who are affected by kidney disease. Mike’s personal journey began in 2010 when he was diagnosed with kidney disease during a routine checkup. Despite feeling perfectly fine, he discovered that his kidney function had dropped to just 9%. Over the next few weeks, Mike’s condition became worse and with his kidney function dropping to 5%, he began dialysis treatment at Hull Hospital. It was here that he learned about Kidney Patients Associations (KPAs) and decided to become a member. Mike spent four long years on dialysis, waiting for the day when he would finally receive the call to go to the hospital for a life-saving kidney transplant. That day finally came, and since then, he has been able to cherish the gift of life for nine and a half years.

“In my new role as Membership Development Officer for the NKF, I aim to work collaboratively with all of the Kidney Patient Association’s offering assistance and support as needed and facilitate the establishment of new KPA’s in areas showing interest.” We are thrilled to have Mike on board and look forward to the incredible work he will do for Kidney Patient Associations. Andrea Brown, CEO of NKF said “I am really pleased to welcome Mike to his new role in the NKF staff team. His role will give the NKF more opportunities to support Kidney Patient Associations around the UK and hopefully help grow their membership.” Presentation of cheque from Ted Bowler's family race night fundraising event - Sally Hill, Christine Courtney, Wendy Bowler and Mike May

With the help of a core group of people, Mike worked to keep the KPA going, eventually becoming the Chairman for the Humberside Kidney Patients Association (HKPA). Mike previously organised day trips, raffles, and even caravan holidays situated in Skirlington near Hornsea on the East Coast for patients, carers and staff, as well as working to raise awareness of kidney disease at various World Kidney Day events over the years. In his brand-new role with the National Kidney Federation as Membership Development Officer, Mike is excited to continue his work helping those affected by kidney disease.

WKD 2018 - Mike with Julie Hill (Live Donor Specialist Nurse) and Dr Helen Collinson (Consultant Nephrologist) Humberside Fire Brigade with their organ donation liveried fire engine. In the photo are: now retired Chief Fire Officer, Chris Blacksell. Mike May and John King (Kidney patient - sadly, not with us anymore)

WKD 2019 in the photo are Mike, Michelle Barber(patient), Dr Helen Collinson (Consultant Nephrologist) and Wendy Robinson (Renal Social Worker) HELPLINE 0800 169 0936 | www.kidney.org.uk | Winter 2023 | 3

News & Events

NKF Annual Patients' Event Sept 23 by Annie Taylor

There was quite a buzz at this year’s NKF Annual Patients' Event which was held in the East Midlands in September. Maybe it was because it was the first time the event has been held face to face since 2019. Maybe it was the lively line-up of speakers, or the celebration of the NKF’s 45th anniversary. Or maybe it was the enthusiasm of everyone attending – patients, NKF team, speakers and exhibitors. It was my first Patient Event and what a great one it was. Here’s an overview of the main day and if you’d like to listen to any of the presentations and see the slides, visit https://www.kidney. org.uk/news/nkf-annual-patients-event-a-success-afterreuniting-for-the-first-time-since-covid-19-pandemic Following a successful buffet and quiz on Friday evening hosted by NKF’s Pete Revell, and convincingly won by ‘The Wombles’ team (bottle of champagne), the main event started on Saturday morning with our Chairman, David Coyle welcoming everyone. After remembering those we have lost over the year with a minute’s silence, David went on to describe the success and impact of the NKF, both nationally and locally in a world that’s changing for us all. David listed the NKF’s progress in delivering on the five-year strategy as well as the annual development plan. Our first guest speaker was Dr Sharleen Greenwood who presented an update on Kidney Beam – the kidney patient tailored online exercise service. With the overall aim of improving people’s wellbeing through exercise, the programme launched in 2020 and was developed with kidney patients. Kidney Beam has gone from strength to strength with more than 3,000 people signing up, over 18,000 classes completed and 72% of users, returning. Results of a clinical trial will be available shortly and we will report on this in our next issue. Our next speaker, Dr Aurangzaib Khawaja, Vascular Surgeon at UHB, presented Patient Reported Outcomes in Dialysis and Vascular Access which has the overall aim of achieving right access, right time and the right reasons for the patient. Results are driving challenge, improvement, quality indicators for practice, and greater understanding of the variables for the individual. Tess Harris, CEO of Polycystic Kidney Disease Charity spoke of the progress in diagnosis and treatments for PKD. This includes the genomic revolution, the introduction and impact of new

Visitors to the NKF stand 4 | Winter 2023 | www.kidney.org.uk | HELPLINE 0800 169 0936

drugs, new and ongoing research and the importance of patient involvement and contribution in every new development. After a lovely lunch together, some serious networking and visits to the exhibition stands, the afternoon commenced with Professor and Consultant Nephrologist, David Wheeler presenting CKD & Diabetes: Let’s Stop People with Diabetes Developing Kidney Failure. David described the global epidemic of type 2 diabetes as the biggest cause of kidney disease. Recognising diagnosis needs to be faster, David went on to describe new medications which are paving the way to slow the deterioration and progress of kidney disease. Daljit Bains, Welfare Right Officer and regular speaker and contributor to NKF events and publications provided a useful update on Welfare Benefits. Daljit’s slides can be accessed for the detail of her session and some of the queries and concerns raised. Networks, Kidney and You was presented by Stephen Cass, Director of London Kidney Network and Vicky Ashworth, Lead for North West Kidney Network. Stephen and Vicky presented how renal clinical networks are helping clinical teams collaborate and work together to improve clinical and patient experience outcomes. Providing examples of local projects in progress, including some exciting new innovations their excellent slides showed masterpieces and famous works of art to draw parallels with ways of thinking and factors needing to be considered when pushing the boundaries and making change happen through collaboration. Next, Andrew McAllister, our patient speaker, spoke and got and us all involved in CKD and the Power of Positivity. Arriving on the platform to Gloria Gaynor’s ‘I Will Survive’, Andrew told us his story and how his thinking changed over time about his kidney disease and how it impacts his life. This lively session gave us some pointers on how to make a shift and think positively - relevant to anyone. Ed: if you only listen to one of the sessions online – make it this one.

Speaker panels replying to audience questions

Winter 2023

KPA officers, members and the team pictured with the 45th Anniversary celebration cake

David Coyle Vicky Ashworth

Andrew McAllister

A few takeaways from the event •

• •

People were very keen to participate and ask questions of all our speakers after their sessions which was informative and useful for everyone. Feedback on the day told us all speakers were rated ‘excellent’ by the majority from all replies. This year we had the largest number of exhibitors stands – 18 - which delivered helpful information and education with some great conversations taking place – plus a few freebies. The NKF’s 45th anniversary cake tasted as good as it looked… Saturday evening’s dinner and dance, complete with magician was enjoyed by everyone who attended.

ITN + NKF's 'Understanding Kidney Health’

David Wheeler

Sharlene Greenwood

Daljit Baines

Andrea Brown

Speaking about the whole event, NKF Chief Executive, Andrea Brown told us:

After a long wait due to the COVID-19 pandemic, we were very happy to welcome everyone back to our Annual Patients' Event. We have not been able to hold a face-to-face annual patient event since 2019, so it was a significant moment for us to all come together again with our amazing kidney community. We were delighted that the event was well attended and that everyone enjoyed it. A big thank you to all of our attendees, guest speakers, exhibitors, sponsors and the NKF staff who made the weekend a great success.

David Coyle

Dr Auranga Zaib

Delegates watching a speaker presentation

Stephen Cass

HELPLINE 0800 169 0936 | www.kidney.org.uk | Winter 2023 | 5

News & Events Your Stories

The gift that really has kept on giving As we continue to celebrate the NKF’s 45th anniversary Andrew Lines recently celebrated his 44th kidney anniversary, and we thought this was a story worth sharing and celebrating. Andrew’s story was told in Kidney Life back in 2021, you can revisit it on the NKF archives of Kidney Life on the website. I recently caught up with Andrew and his brother Richard, who donated his kidney to Andrew all those years ago, to find out what has changed, how they both are and their plans for the future. This is a lovely update. Andrew had kidney disease from a young age with only one kidney working at all, and that not doing a very good job. At the age of 24, after only three months of dialysis, Andrew was successfully transplanted, receiving a kidney from his brother Richard. I started by asking Andrew a number of questions about his experience over the last 44 years:

Where did you get support from when your life changed and you got your new kidney? Support came from my family but predominantly my wife, then my fiancé, Cheryl. We had to postpone our wedding for a year and she looked after and cared for me. My GP Dr Anne Hood who was amazing and the transplant clinic at Guys Hospital of course.

How do you think kidney care has changed over the last 44 years? And what have been the major developments you’ve seen and experienced? Kidney care has changed unrecognisably over the years. I was born with one kidney that didn’t function and the other not fully functioning caused by a reflux problem. This was discovered when I was eight years old, via an exploratory operation when they literally opened me up to take a look inside as there weren’t scans in those days. The diagnosis was that I wouldn’t live longer than my early twenties. I moved to London in my early twenties and my consultant at the time at Ipswich Hospital told me that that might very well be the best decision I’d ever make. Timing is everything as whilst being very unwell one morning, my GP ran tests. The next thing, she turned up on my doorstep and had got me under the radar of Guys Hospital. She even offered to drive me there. Would that happen nowadays with the shortage of doctors? I doubt it very much. Dialysis used to be a seven hour procedure, three days a week. Cheryl used to travel in with me on her way to work 6 | Winter 2023 | www.kidney.org.uk | HELPLINE 0800 169 0936

Andrew and Richard

and pick me up on her way home from work. Amazingly I have recently been led to believe that the cause of the reflux condition that led to my kidney transplant can now be rectified by an operation, rather than a transplant. Also, medication has changed over the years with less dependency on immunosuppressants. My immunosuppressants were halved in 2000 and I started having the flu jab afterwards which together drastically cut down on the illnesses that I was getting.

What support have you had from the National Kidney Federation over the years? I was helped by the National Kidney Federation Helpline most recently regarding the Covid vaccination. I found the advice very helpful. Thankfully my health has been very good over the years, so I have not needed the support that many have needed. It’s great to know the NKF is there if and when we need it though.

How is your health now, Andrew? Apart from getting older, very good! The long term use of immunosuppressants over the years has taken a toll on my bones, particularly my right knee but the actual kidney has been excellent.

How do you keep healthy now? I worked full time for thirty eight years in the toy trade, at Hamley’s, which has helped keep me healthy. I have played a lot of cricket for various teams, at present I sing in a choir – the East Coast Community Choir and I enjoy gardening.

What about the future, do you have any exciting plans? I have travelled to many different countries, places I thought that I’d never see, as well as all over the UK, so I am now quite content and happy at nearly seventy to sit back and enjoy a quiet life with my cat Saxon, on my lap! My wife and I enjoy music and we have three live concerts lined up. Now that I have retired, I take great pleasure in watching Lowestoft Football Club playing and take much pleasure from feeding the wildlife in our garden. We have a couple of hedgehogs as well as a wide variety of birds visit.

Winter 2023

Andrew and Cheryl enjoying a moment in Southwold. Andrew and Richard outside Guy's shortly after the transplant in 1979. Richard

And from Richard who donated his kidney to his brother all those years ago:

You donated a kidney to your brother a long time ago. Thinking back to that time what was it that made you decide that donating your kidney was the right thing to do? Two main factors influenced my decision to donate. I had witnessed first-hand how ill Andrew was at the time and noticed that dialysis was a life support system, not a facilitator for a future enjoyable lifestyle. I believe my other two brothers had also been tested to see if they were a suitable match, but out of the three, mine proved to be the best match.

What would be your message to people who may be in a similar situation to the one that you were in, thinking about becoming a donor? My advice to people thinking about becoming a donor is to listen to the professionals as they explain the options and potential outcomes relating to your transplant scenario. Yes, donating one of your organs involves major surgery and risks. If you enjoy good health, which was the case for me, then these risks are substantially reduced. My surgical experience was life-enhancing; the staff, surgeons, and other patients on the ward formed a community of compassion, which is hard to come across. It was a very positive experience for me; I gained and did not lose out in any way. Yes, you do feel the impact of major surgery, and I needed about a month to take it easy before I was able to return to my college studies. Still, some 44 years down the line, I have not experienced any setbacks in health, and my life has unravelled normally.

How is your health now? My health today is pretty much the same as for any 74-year-old male in this country; a couple of years back I needed radiotherapy treatment for prostate cancer, so I experience the after effects. That aside, though, I consider myself in good health and enjoy cycling around my city and occasionally going on long rambles in the country.

And the future, do you have any exciting plans? My immediate future is going to be busy as I am very much looking forward to travelling out to Australia for my eldest daughter’s wedding taking place in December. Bita, my wife, and I work two full-sized allotments down here in Portsmouth, growing all our veg and cut flowers; this is a lifestyle we enjoy and look forward to pursuing for the next few years. In retirement, I have time to pursue two other pleasures: Watercolour and Chinese Brush painting. I am now in the process of building a website to share my work with others, and I invite you to keep in touch with this journey at: ricardoleonardo.co.uk

Watercolour Originals & Prints and Chinese Brush Paintings in Hampshire and West Sussex

HELPLINE 0800 169 0936 | www.kidney.org.uk | Winter 2023 | 7

News & Events

Exploring the National Ki National Home Dialysis Peer The National Kidney Federation expanded its free patient support services in 2021 with the launch of the National Home Dialysis Peer Support Service. The service now has trained twenty-three peer supporters on standby who provide guidance and advice based on their own personal experiences with kidney disease, shared care, home dialysis or caring for someone on home dialysis. The NKF's Home Dialysis Peer Supporters are professionally trained volunteers, ranging in age from 25 to 80 years old, who have experience with home haemodialysis (HD), peritoneal dialysis (PD), going on holiday whilst on HD, PD, caring for someone on HD, lifestyle and working whilst doing home HD or PD.

Shared Care If a patient is doing regular haemodialysis treatment in a hospital or at a haemodialysis centre, they can choose to learn about, practice and even get involved in doing some of the tasks themselves, this is called Shared Care. Patients who wish to learn more from others who have done Shared Care can be matched with one of the NKF’s experienced Peer Supporters to help them understand more about Shared Care and talk them through the process depending on how much they wish to get involved. By getting involved with their haemodialysis treatment, this will mean the patient will have more independence and control of their treatment. Some of the tasks patients can get involved in with Shared Care include: • • • • •

Measuring weight Measuring blood pressure Measuring temperature Setting up a dialysis machine Preparing own dressing pack ready to put on dialysis • Programming the machine • Inserting or removing their own fistular needles Any query related to dialysis treatment can be shared with the NKF Helpline.

HELPLINE

0800 169 09 36 8 | Winter 2023 | www.kidney.org.uk | HELPLINE 0800 169 0936

Accessing the Peer Support Service To access the Home Dialysis Peer Support Service, patients, caregivers or family members can call or email the NKF Helpline or fill in a referral form located on the NKF website. The NKF Helpline will evaluate the query at hand by reviewing the completed referral form that outlines the person’s details, and then they will determine which peer supporter would be the most appropriate match. Once peer support has taken place, the NKF Helpline contact both the peer supporter and the person who received support for their feedback. There are sometimes occasions when people want to speak to the same peer supporter they have spoken to previously and the NKF Helpline will be able to help set this up. People find it really useful to speak with people who have experience in doing home therapies and it can help them decide which type of home therapies they do.

What people say about the service… NKF Home Dialysis Peer Supporter “My son has been on home dialysis since May 2021 since his transplant of eight years failed. Home dialysis has given him so much freedom and there have been lots of family occasions that he’s been able to go to as the flexibility means he can change his dialysis days and times to suit. I’m with him three days a week for dialysis and we enjoy our time together. He’s become an uncle recently and loves the days when his niece comes to visit him.”

Feedback from people who have used the NKF Home Dialysis Peer Support Service: “I am getting close to starting dialysis and I was aiming towards doing PD but I was very worried about doing this at home as I live alone. I spoke to one of the NKF Home Dialysis Peer Supporters, and she was very kind, understanding and helpful, she answered all my questions and made me feel more positive about going on PD.”

Winter 2023

dney Federation’s Support Service My husband is on in-centre dialysis and he had been thinking of looking into doing home haemodialysis. I was keen to be trained up as well to learn the machine and needling. I contacted the NKF Home Dialysis Peer Support Service and my husband and I spoke to one of their supporters who helps her husband with home haemodialysis. My peer supporter really was so helpful, supportive and explained everything thoroughly to us.

Working Together Since the service was launched, the NKF has worked closely with Diaverum and Fresenius Medical Care to educate their staff about the service and to promote it within their renal units, offering support to those who are considering steps to home treatment.

The NKF Peer Support Service also has a good working relationship with Jacqui Byfield, Renal Care Practitioner, at Herefordshire NHS Trust who also sends peer support referrals from the Trust to the NKF. For more information about the service, please call the NKF Helpline on 0800 169 0936, email: helpline@kidney.org.uk Or visit the National Kidney Federation’s website to access the referral form and Home Dialysis Peer Support information leaflet: www.kidney.org.uk/peer-support The National Kidney Federation’s Home Dialysis Peer Support Service is an excellent resource for anyone affected by kidney disease who is considering or currently undergoing home dialysis or shared care.

HELPLINE 0800 169 0936 | www.kidney.org.uk | Winter 2023 | 9

News & Events

Organ Donation: Register Your Decision In May 2020, the law around organ donation in England was changed to allow more people to potentially save more lives. This change, known as 'Max and Keira's Law,' was a pivotal moment in the nation's healthcare landscape. The new system, which has now been fully introduced into all nations of the UK, presumes consent for organ donation unless an individual explicitly declares a decision not to donate. This shift was a vital step toward addressing the shortage of organs available for transplant. While the ‘opt-out’ system simplifies the process of donation, it remains crucial for individuals to confirm their decision on the NHS Organ Donor Register. Here's why: • It ensures personal choice: Confirming your decision allows you to make an informed and deliberate choice about whether you want to be an organ donor. It respects your autonomy and beliefs. • It eases the burden on loved ones: When you confirm your decision, you make that decision easier for your family to honour during an already challenging time. • It avoids misunderstandings: Confirming your decision eliminates any ambiguity about your intent to donate your organs. It prevents misunderstandings and ensures your wishes are honoured.

Discuss your decision with your family Discussing your decision about organ donation with your family is equally important. These conversations can be uncomfortable, but they are vital for several reasons: • Respects your wishes: Families are far more likely to support donation when they already know it was what their relative wanted. 9 out of 10 families honour their family member when the donor had confirmed their decision to donate on the NHS Organ Donor Register. • Facilitates informed decisions: It allows your loved ones to understand the importance of organ donation and make informed choices for themselves as well. • Strengthens bonds: Discussing your values, beliefs, and end-of-life choices can deepen the connection between you and your family, fostering understanding and empathy.

10 | Winter 2023 | www.kidney.org.uk | HELPLINE 0800 169 0936

Two minutes now could save up to nine lives Confirming your decision on the NHS Organ Donor Register is a straightforward process. Here's a step-bystep guide: 1 Visit to the NHS Organ Donor Register website (www.organdonation.nhs.uk) and create an account if you don't already have one. 2 Log in to your account using your credentials. 3 Confirm Your Decision: Navigate to the 'Confirm your registered decision' section. Here, you can verify your choice regarding organ donation. 4 Review and Submit: Double-check your decision to ensure it aligns with your wishes. If everything is correct, submit your confirmation. 5 Encourage your friends and family to do the same. Share your experience to inspire others to confirm their decision too. You can also register your decision to donate via the NHS app, through the DVLA when applying for your driving licence, via your Boots Advantage Card or when registering with your GP. Organ donation has the power to save and transform lives. The UK's shift to an opt-out system for organ donation is an important step toward addressing the shortage of organs available for transplant. However, this system relies on individuals confirming their decision on the organ donation register and, more importantly, families honouring that decision when approached. By taking the initiative to confirm your decision and engaging in open, honest conversations with your loved ones, you contribute to the well-being of others and ensure that your own decision is honoured. Let us all embrace the gift of life by actively participating in this life-saving process.

Winter 2023 Your Stories

To Drink or Not to Drink

with Chronic Kidney Disease Kay Allardyce is a kidney transplant recipient and was diagnosed with CKD in her mid-twenties. Kay has both personal and professional backgrounds in healthcare as an osteopath with a naturopathic diploma. Kay’s mother, Linda Tomlinson donated her kidney to her 10 years ago and since then Kay has given birth to two children and maintained a successful career in Osteopathy and teaching Pilates. She writes in her published memoir about her struggles with social drinking. Living with Chronic Kidney Disease (CKD) is a journey filled with adjustments, self-awareness, and constant decision-making. One of the most emotionally taxing dilemmas I faced during my mid-twenties was the question of alcohol consumption. The age-old debate of 'to drink or not to drink' took on a whole new meaning for me. I've always considered my alcohol intake to be fairly moderate. There were numerous days during the workweek when I abstained from drinking entirely. However, the real challenge arose during weekends, social gatherings, or casual outings with friends and my boyfriend. These were the moments when my age, my desire for normalcy, and my medical condition clashed. I found myself in a constant internal battle. On one hand, I yearned to enjoy my youth, freedom, and the simple pleasure of a drink with friends. On the other, the weight of CKD and the potential implications of alcohol on my health loomed large. The guilt associated with drinking, even socially, was overwhelming. I felt trapped between wanting to be a part of the social scene and the guilt and health concerns that came with each sip. To navigate this dilemma, I often volunteered as the designated driver. This role provided a convenient excuse to avoid alcohol without diving into the details of my kidney condition. Explaining my CKD to curious friends or acquaintances often led to sympathetic looks or responses, which I found disheartening. I didn't want my condition to be the focal point of every social interaction. To strike a balance, I set a strict rule for myself: a maximum of three alcoholic drinks during any social outing. This selfimposed limit was my way of enjoying the moment while still being mindful of my health. The next day, if I adhered to this rule, I felt a sense of accomplishment, free from the guilt that would otherwise consume me. However, this journey wasn't just about alcohol. It was about coming to terms with a life-altering diagnosis and finding ways to maintain a semblance of normalcy. Every decision, from what to eat to how to socialise, was influenced by my CKD. In retrospect, the question of 'to drink or not to drink' was more than just about alcohol. It was symbolic of the larger challenges I faced living with CKD. It represented the constant juggling act of managing my health while trying to lead a life that wasn't solely defined by my medical condition.

My Top 5 Tips to Reducing Alcohol Consumption 1 Set Clear Goals: Decide how many days a week you want to drink and how many drinks you'll have on those days. For instance, you might decide you'll only drink socially on weekends and limit yourself to two drinks. Having a clear goal can make it easier to stick to your plan. 2 Choose Alcohol-Free Days: Designate certain days of the week as alcohol-free days. This not only gives your body a break but also helps to break the habit of daily drinking. Over time, you can increase the number of alcohol-free days as you get used to consuming less. 3 Find Alternatives: Try substituting alcohol with a nonalcoholic beverage you enjoy. This could be sparkling water with a splash of fruit juice, herbal teas, or non-alcoholic versions of your favorite drinks. Having an alternative can satisfy the ritual of having a drink without the alcohol content, and it will keep you better hydrated. 4 Mind Your Environment: If you're used to having a drink in certain settings or during specific activities, try to change your routine. For instance, if you always have a drink when you come home from work, consider going for a walk or engaging in a different relaxing activity instead. If certain friends or social settings always involve heavy drinking, consider expanding your social activities to include more alcohol-free events. 5 Seek Support: Talk to friends or family members about your goal to reduce your alcohol consumption. They might offer support or even join you in cutting back. If you find it challenging to reduce your intake on your own, consider seeking professional help or joining a support group. There are many organisations and programs designed to help people reduce or eliminate their alcohol consumption. In conclusion, living with chronic kidney disease taught me resilience, self-awareness, and the importance of making informed choices. While the journey was fraught with challenges, it also offered invaluable lessons in self-care, determination, and finding joy in the little things. Whether I chose to drink or not was just one of the many decisions I made along the way, each shaping my journey and reinforcing my commitment to living life to the fullest, despite the challenges. Kay Allardyce has written a book about her journey with kidney disease and undergoing a kidney transplant, a kidney donated by her mother. You can buy the book from Amazon or go to www.kosteo.co.uk for more information. “Thanks for My Kidney, Mum!” is £12.99 in paperback and £19.99 in hardback.

Kay with her Mum, Linda in 2022 HELPLINE 0800 169 0936 | www.kidney.org.uk | Winter 2023 | 11

News & Events Your Stories

Sheffield nurse gives birth to miracle baby

whilst balancing life as a dialysis patient

Raegan Mlynek, a Nurse from Sheffield was diagnosed in 2016 with a form of chronic kidney disease, after finding it would be harder to conceive with her underlying condition, she was told IVF would be a strain on her health. A second opinion was pursued with another doctor after knowing of the risks that come with her kidney condition. Raegan said “We had an ethics meeting with another doctor before it was agreed that we could proceed with IVF treatment.”

“I always knew I would need a transplant as when I received my initial kidney disease diagnosis, they warned me I would likely need a transplant after 5 years, a prediction based on the rate of kidney function decline at the time.

When Raegan and her partner found out that the IVF treatment was a success, they were delighted to reach to this point after 4 years of getting through the process of starting IVF treatment. However, Raegan needed to begin dialysis after 28 weeks of pregnancy.

“It’s now been 7 years since that conversation and my understanding is that the renal team would like me to be a year postpartum before looking at a kidney transplant for me. The silver lining of needing dialysis after giving birth? I can catch up on sleep whilst my daughter strengthens her bond with her dad and grandparents! We will be forever grateful to the NHS and the team effort involved from our IVF journey to create our miracle baby, to allowing my partner and I to become parents safely and complete our family.”

“We were over the moon when we found the IVF had been successful, however my kidney function did worsen resulting in me needing dialysis. But the day of the birth came round really quickly, and I was the first on the list for a Caesarian section and baby Maeva was born at 36.5 weeks at 5lb 10oz. I am sure that without my consultant we wouldn’t have ever had the chance to meet Maeva earth side.” After the birth, Raegan and Maeva weren’t out of the woods; “I was getting stitched up and I don’t remember hearing her cry. Luckily, there were specialists on standby as they knew she was going to be premature and they started work on her straight away. I couldn’t see much of what was happening, but I was told she had fluid on her lungs and was struggling to breathe. Eventually when she could breathe on her own, they passed her to me and the relief I felt was like nothing else.” After an hour of observations Raegan was taken to the ward. “I had a room ready to have dialysis there if I needed it. It was a scary couple of days as Maeva did end up in NICU, but we both recovered quickly and were discharged on day three. Fast forward to the present day, I can’t imagine life without her. It was always up for debate by the renal team whether I would need dialysis postpartum and unfortunately, I am still needing dialysis three times a week.”

Proud mum Raegan and baby Maeva 12 | Winter 2023 | www.kidney.org.uk | HELPLINE 0800 169 0936

Holiday in. . Sicilia ! We know that for those who need dialysis, going on holiday can be particularly difficult. For this reason, Iblea Medica has decided to offer a service that will allow you to enjoy a holiday in Sicily. You won't have to worry about anything. Thanks to this new project you can continue your hemodialysis treatment while on holiday in one of the most beautiful areas of Sicily: Ragusa.

FENIX HOUSE

DIALYSIS CENTER: The Iblea Medica Hemodialysis Centre in Ragusa is accredited and affiliated with the National Health System and offers outpatient personalized services. It also accepts the European Health Insurance Card (EHIC) which entitles you to access medically necessary state-provided healthcare when you're visiting one of the 28 EU member states, Iceland, Liechtenstein, Norway and Switzerland.

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THE FOLLOWING SPECIAL EXCURSIONS WILL BE ORGANIZED EXCLUSIVELY IN THE PERIOD OF OCTOBER 2023 - MAY 2024: ·Vineyard visit and wine tasting, Catania tour ·Olive oil tasting, Olive Oil Mill visit + Artisanal Ice Cream tasting ·Zafferana Etnea Fair + Honey & Mushroom Fair + Honey Factory visit (October 2023) ·Visit of Caltagirone + Nativity Scenes Exhibitions + Ceramics factory visit (December 2023) ·Etna + The Acireale Carnival (February 2024) For further information, visit our website or contact us, our team will be happy to assist you.

www.dialisiragusa.it

Beato Angelico street 16 97100 Ragusa - Sicily +39 370 12 52 742 Alessio Dialisi Ragusa Emodialisi in Vacanza

booking@dialisiragusa.it

News & Events

The Last 45 Years of Renal Care and a Glimpse of the Future As part of our celebration of 45 years of the NKF we all recognise that a lot has changed in diagnosis, treatment, life expectancy and care for people living with kidney disease. This article looks back at some of those changes and the major milestones and forward to what the future might hold for renal care. As a young woman (almost 45 years ago) I worked in a very busy GP surgery. I’ve always remembered a young patient who had severe mental health problems. He visited a lot and it was clear life was very hard for him. I recall asking one of the GPs what was wrong. I was told that as well as his mental health problems his physical health was poor and his kidneys were failing. It was explained to me that he couldn’t be treated with dialysis because he wouldn’t be able to cope and as there was a limited number of machines and access to them, it wasn’t an option. I recall feeling sad about his situation and in the years to come in a non-clinical career in the NHS of over 30 years, I realised this was the first time I’d come across rationing and the critical importance of decision making. At that time the clinical understanding of the benefit of dialysis was still evolving, in part due to the technology and also the understanding of the relative benefit. I believe opportunities would be different today for that young man. Fortunately things have changed very significantly in the last 45 years. I’ve researched some of the changes and how they have impacted people’s lives, changing quality of life as well as the length of life..

A brief look at the history of care for people with kidney disease In ancient times, unsurprisingly, kidney disease was poorly understood, and treatments were severely limited. Ancient civilizations like the Egyptians and Greeks described kidney-related symptoms, but there were no effective medical interventions. Treatments were based on dietary changes, herbal remedies, bloodletting, water therapy and prayer and rituals. Understanding kidney disease evolved over time as scientific knowledge expanded, especially once microscopes were introduced in the 17th century. But it wasn’t until the 19th century that Dr Richard Bright, an English physician, published his work in 1827 describing the pathology of kidney disorders.

14 | Winter 2023 | www.kidney.org.uk | HELPLINE 0800 169 0936

The first workable artificial kidney, designed by Dutch physician, Willem J Kolff in 1945. This machine inspired the design of many that followed.

Science and technology paved the way for new effective therapies and treatments to be established over the following years. Twentieth century advancements saw the development of a breakthrough treatment – haemodialysis, which was further developed over time by a number of researchers and clinicians into the 1940s. The most important of these was Willem Kolff – the father of dialysis, who invented the first practical kit and treated patients in occupied Holland. In the last 45 years, haemodialysis machines have improved due to technological advances, making longterm dialysis treatment possible. Peritoneal dialysis, a different form of kidney replacement therapy, was introduced in the 1960’s. The first successful kidney transplant took place in 1954 by Dr Joseph Murray. After this breakthrough kidney transplantation became a viable treatment option. New immunosuppressant drugs, to prevent organ rejection, improved success rates.

Winter 2023

These breakthroughs revolutionized kidney disease care: • Advancements in diagnosis and deeper understanding of kidney diseases, such as glomerulonephritis, polycystic kidney disease and acute kidney injury have led to better disease management. • The focus on prevention through lifestyle changes, early detection and new treatments to prevent or reduce the risk of kidney failure. • The management of risk factors like diabetes and hypertension have all had an impact on care and outcomes. Today kidney care involves a multidisciplinary approach, recognising that kidney disease has an impact on every aspect of a person’s life. Holistic care from professionals and self-management and care by the individual themselves can make a big Dana Holmes NKF Peer Supporter difference to quality of life.

Looking to the future of how kidney disease is managed Today across all healthcare, there's a growing emphasis on personalised or individualised medicine, including precision treatments for specific kidney conditions, which holds the promise of better outcomes for people with kidney disease. The future of dialysis will undoubtedly continue to be driven by advances in technology and new treatment approaches. There will be massive leaps in understanding due to genomics and imaging that may well drive true ‘cures’. Dialysis machines themselves could become more efficient and more portable, even wearable. This would result in increased flexibility and convenience for people about where and when they dialyse, which would be a major improvement for many.

What else is happening? • Personalised treatment tailored to individual patient’s needs, based on genetics and real-time continuous monitoring through wearable devices which can help manage any condition. • Reducing complications of kidney disease through innovation, increased education and selfmanagement, at the same time as improving access for monitoring and consultations through the use of tech. • Regenerative medicine - advances in regenerative medicine may lead to kidney tissue repair. Research on regeneration therapies focus on stem cell, biotissue and genome technology continues.

• Research is ongoing across the world to develop an artificial kidney. This could be an implanted device or a bioartificial kidney, both of which would mimic the function of natural kidneys. There’s so much information out there about what’s being worked on at the moment. I can’t include it here. These advancements all aim to enhance quality of life by reducing the burden of treatment for people living with kidney disease and their families and carers. They also aim to make kidney treatments more cost-effective and more accessible for a growing, ageing population. There’s no doubt all of these developments depend on ongoing research and innovation which in itself is expensive and takes time. Between 3 and 6 million people live with CKD in the UK. Over 55,000 have been transplanted or are on dialysis. For everyone, these new treatments can’t come soon enough. Many of you will have seen the press coverage of eight year-old Aditi Shakar’s kidney transplant following a bone marrow transplant from her mother meaning she will not have to take immunosuppressant drugs for the rest of her life. This will be a game changer for some people with particular kidney diseases which affect the immune system. And while it may not be a cure-all, it is a major milestone. Just a year ago we read about Quanta’s award-winning home dialysis machine, engineered originally to reconstitute orange juice from concentrate, helping people improve their lives and taking control by dialysing at home, with more regular sessions, when it’s most convenient. Though it’s not available in the UK currently, surely others will follow. If you would like to know more about kidney research in the UK you can visit kidneyresearchuk.org – it’s a great place to start. There’s one thing for sure, which Greek philosopher Heraclitus is credited with – the idea that the only constant in life is change. Bring it on. Written by Annie Taylor and fact-checked by Dr Richard Fluck, Consultant Nephrologist, University Hospitals of Derby & Burton, NHS Foundation Trust. HELPLINE 0800 169 0936 | www.kidney.org.uk | Winter 2023 | 15

SET UP A MONTHL Y DIRECT DEBIT Fundraising News & Events and support kidney patients who need our hel p now

HOW WE USE YOUR MO

and their fam more than ever. ilies,

How to set up you r Direct Debit

£5

Donation Leaflet Donate by phone

You can call us on 01909 544999 for a chat to set up a Direct Debi t – it couldn’t be simp ler.

Donate online

Go to our website and sign up to a regu lar monthly donation: www.kidney.org.uk /donate/donate/d irect-debit

NEY...

per month helps cove r the costs of the free call Helpline. to

£7

.50 per month helps towa rds postage costs in sending out free incurred information to patie nts and renal units. £10 per month helps with the printing cost Helpline to continue to produce, and distr s to enable our patient information. ibute, free vital

Enclosed in thisDonedition of Kidney Life you will find a donation leaflet; ate by post In 2022 The NKF it gives you an update on the service the NKF provides to support our Helpline website reached to 1,000,000 over kidney patients and their families across thespoke UK. There is also an 4,800 page views in callers update on our little superhero, Shaemus, who is always smiling 2022 despite now having to visit the hospital every day for dialysis. Instructions (Please return

this slip in the envel I would like to dona ope supplied) te a regular monthly payment of:

£5

£7.50

£10

Preferred collection day:

Other

enclose a cheque* If you are a UK taxpay er your donation will be worth 25% more at no extra cost to Yes – I am a UK taxpay you. er and would like to Gift Aid my donations I understand I must pay now and in future. enoug h incom the amount of Gift Aid that all charities e tax and/or capital gains tax each donations in that tax tax year to cover and community amate year, and I am respo nsible for paying any ur sports clubs claim on my Please inform us if difference. Gift Aid declaration.your tax status, name or address chang e or if you wish to cance l your

WE NEED YOUR SUPPORT MORE THAN EVER BEFORE!

Name of Account holder:

2023 has been a very productive year, the national Peer Support Service lp, With your he ep ke n we offer is going from strength to strength and is now being offered in we ca kidney supporting their wwUK, w.kidney.o and all Fresenius and Diaverum units across thenkf asrg.uwell as many k patientsother @kidney.org.uk milies. 01909 544999 units. The All-Party Parliamentary Kidney Group is having somefavery productive meetings with MPs. Bank Sort Code:

My Account No: Name and full posta l address of your bank :

Signature:

Post Code:

Date:

*Please make chequ es payable to: Nation al Kidney Federation

Registered in Englan d and Wales as a Compa ny limited by guaran and awarded charita tee, Company No ble status, England 5272349 and Wales Charity Number 1106735 Scottis h Charity Number SC049431

See inside to find out how you can help to support the Nati onal Kidney Fede ration...

The five-year campaign to increase home dialysis is halfway through and we are now in the process of producing our fourth update report. And not forgetting the hub of our direct service, the NKF Helpline. Every day Stephen and Linda support many patients by answering phone calls, replying to emails or sending out hundreds of Helpline leaflets to patients and Renal Units. All of these are free of charge to all who use our services, but we couldn’t do it without the generosity of our supporters. In this leaflet, there is an opportunity to support the NKF through a one-off donation or by setting up regular giving. We really hope if you can, you will support the NKF in some way. Thank you in advance for your kindness - we look forward to continuing to support kidney patients and their families next year and beyond.

NKF CALENDAR 2023

Have you got your calendar for next year yet? The NKF Calendar is for sale at just £5 and is perfect for writing down all your important appointments and special occasions and each month has a stunning photo reflecting the time of the year. To get yours while stocks last, please visit https://www.kidney.org.uk/shop or order over the phone at 01909 544999

ONLY

£5 Thanks to industry partners and KPAs for sponsoring each month in the calendar.

NKF CHRISTMAS DRAW

This year’s Christmas draw is all about winning cash, there is a top prize of £1,500 and four other cash prizes for you to spend on whatever you like, use the cash for Christmas, pay some bills or treat the family to something nice, if you are a winner it will be a nice position to be in. If you would like to purchase our raffle tickets at £1 each online, go to https://www. kidney.org.uk/shop/nkf-christmas-draw Please select how many tickets you would like and at the checkout make sure you choose free post, we will then allocate your tickets and put them in the draw and email the ticket numbers to you. Or if you'd prefer you can call 01909 544999. 16 | Winter 2023 | www.kidney.org.uk | HELPLINE 0800 169 0936

Winter 2023

CHRISTMAS CARDS It’s the time of the year to buy your Christmas cards and where better than the NKF? We have managed to keep the price the same as last year's, at just £3.50 for 10 cards. Even better, all cards can be recycled and are 100% biodegradable. Please visit the Christmas shop for a full selection of cards, gift wrap, money wallets and more www.kidney.org.uk/shop

FROM

99P

CHRISTM AS CARDS & CALEND

CLASSM ATES & EVERYD AY CARDS

All Christmas Cards are printed on high quality material and come in packs of 10 cards with envelopes. Each pack costs £3.50

All the cards your child needs for school. Each pack contains: 30 square cards (10 each of 3 designs sized 100 x 100mm) and 1 Teachers card sized 171 x 121mm £4.99

All cards have the following greeting: ‘With Best Wishes for Christmas and the New Year’

Cards can also be ordered online at https://www.kidney.org.uk

2. SNOWMAN’S PARTY 171 x 121mm

1. WINTER CATTLE 123 x 123mm

3. WINTER HATS 123 x 123mm

10.

4. WINTER LIGHTS 171 x 121mm Happy Christmas Merry Christmas

Happy Christmas Merry Christmas

5. TOWARDS BETHLEHEM 171 x 121mm

6. THE CHRISTMAS WREATH 123 x 123mm

Merry Christmas

Happy Christmas

Happy Christmas Happy Christmas

Happy Christmas Merry Christmas

Calendar 2024 Merry Christmas

7. CHRISTMAS ON THE FARM 171 x 121mm

8. PEACE AND JOY AT CHRISTMAS 123 x 123mm

Discounted cards available online

Happy Christmas

9. NKF 2024 CALENDAR Happy £5.00 Christmas 155 x 340mm Merry Christmas

Happy Christmas

16. SNOWFLAKE GIFT-WRAP £2.40 Each pack contains 4 sheets with matching tags

Happy Christmas Happy Christmas

Happy Christmas

NKF PRODUC TS

Happy Christmas

Happy Christmas Happy Christmas

Happy Christmas

NKF Proud Parent / Proud Kidney Bean T-Shirt £10.00 Adult and child sizes available To order go to www.kidney.org.uk/shop

Happy

Christmas 17. TASTE COOK BOOK Happy Christmas £7.50

Happy Christmas

at www.kidney.org.uk/shop

All the cards featured in this brochure can be recycled and are 100% biodegradable.

14. ROBINS

15. REINDEER GIFT-WRAP £2.40 Happy Christmas Each pack contains 4 sheets with matching tags

Happy Christmas

13. SANTA’S SLEIGH

Happy Christmas

Happy Christmas Happy Christmas

Happy Christmas

GIFT WRAP

Happy Christmas

Happy Christmas Happy Christmas

12. SNOW PALS

Happy Christmas

Happy Christmas Happy Christmas

Happy Christmas

Happy Christmas Happy Christmas

The ideal way to give cash or vouchers as gifts. Each wallet is supplied with an envelope. 99p each. FREE postage when ordered with other items.

Happy Christmas Happy Christmas

Merry Christmas

Happy Christmas Happy Christmas

11.

MONEY WALLET S

Happy Christmas Happy Christmas

A collection of Birthday, Occasion and Blank cards produced on textured board. Each pack contains: 5 everyday cards 150x150mm £4.99

Happy Christmas

Blue Snowflake Wrap.indd 1 Silver Snowflake Wrap.indd 1

28/08/2014 12:59 28/08/2014 12:59

Red Snowflake Wrap.indd 1

Green Snowflake Wrap.indd 1

28/08/2014 12:59

RUN TO SUPPORT KIDNEY PATIENTS IN 2024 We would love you or someone you know to take part in one of our running events next year. We have never offered this many great events before, from running events local to you or international ones like the Paris Half Marathon or Barcelona Half Marathon we have them all.

Please visit www.kidney.org.uk or call Pete on 01263 722287

SKY HIGH PARACHUTE FOR THE NKF

Imagine standing at the edge of an open doorway in an aircraft flying at 10,000 feet – the noise of the engines and the wind ringing in your ears with only the outline of distant fields below. Now imagine leaning forward out of that doorway and letting go – falling forward into the clouds, skydiving down through the air as you start freefalling at over 120mph! Well you can stop imagining as all this and more is available on one of our 10,000 feet tandem skydives which take place at over 20 airfields across the UK! No experience is required as all training is given and if you raise the minimum sponsorship you can receive your skydive for free!

Visit www.kidney.org.uk or call 01263 722287 HELPLINE 0800 169 0936 | www.kidney.org.uk | Winter 2023 | 17

News & Events Your Stories

Transitioning from Paediatric to Adult Kidney Care – Alex Gibbs' Story The journey of kidney disease is often a difficult and complex one. It can be especially challenging when much younger patients have to make difficult decisions about their care on their own. Alex Gibbs, aged 20, a patient who has been through multiple phases of kidney disease, shares his experiences and the decisions he has had to make on his journey. At just 17, Alex found out that his transplant was rejected. Alex said, “This was the first time I would have a major hospital admission since I was 10, and there were concerns about the emerging COVID-19 pandemic.” Alex had to choose between staying in his local hospital and waiting over a week for a biopsy or being transferred to the children's hospital and getting the biopsy the next day. He chose the latter option and was transferred that night. This was the first of many tough decisions that Alex would have to make. The next decision was more complex. Alex explains; “The initial treatments for organ rejection were not as effective as was hoped, so the doctors proposed a drug called ATG - described as a strong immunosuppressant. Doctors warned me that it could essentially wipe out my immune system for a period of up to 6 months but that it might rescue my kidney. I had to think about this much more. On one hand, if I could keep the kidney for a while longer, I might be able to finish my A-Levels, on the other hand, is losing my immune system in the middle of a pandemic a good idea? I chose to take the drug. It did not work. I started haemodialysis about a month later.”

In 2022 I was scheduled to have a transplant with my Mum donating a kidney. Everything was set for April but two weeks before the surgery, it was called off due to a change in my blood levels. By this time, PD was no longer working for me. A transplant was the plan to fix this problem, but that was not going to happen. I did end up having surgery in April 2022, but not what I had planned. I had the following surgery: removal of my PD catheter, removal of a transplanted kidney, placement of an HD line, and creation of a fistula. I started haemodialysis again the next day. After a few weeks, I was discharged with a new team of staff and another new doctor. Since my health was about as far from ‘stable’ as possible, the University granted me a second deferral to September 2023. I quickly settled into my new routine of haemodialysis and found myself feeling much better than I ever did on PD.

Alex was then faced with another major decision: stay on haemodialysis or switch to peritoneal dialysis (PD). He chose peritoneal dialysis; “PD would mean treatments all night every night, plus setting up the machine in the evening and cleaning it in the morning but would allow me to stay at home, making it easier to attend school, which at the time was online, later returning to in person.” Alex then had an emergency admission to his local hospital and his care was transferred to the adult team. This brought new challenges – a new doctor, new PD nurse, and new protocols that come with adult care. “During my first year in adults, I realised just how easy I’d had it in the paediatrics unit. While on PD, I finished my A-Levels, and received the grades needed to study Medicine. But due to the ongoing pandemic, the University would not allow me to start my studies, so I deferred my place to September 2022. Alex during a dialysis session 18 | Winter 2023 | www.kidney.org.uk | HELPLINE 0800 169 0936

Winter 2023 I attended the British Transplant Games in 2022 in Leeds and had an absolute blast. Things got even better as the day after I returned from Leeds, I was told I had a match on the paired transplant list. Unfortunately, this was not the end of my story, at least not yet.” Alex had a cardiac arrest whilst on dialysis six weeks later before the surgery could even be scheduled. “I recovered well and was told I was “one of the lucky ones”, safe to say I didn’t feel particularly lucky. I had my HD line removed and was left with a barely matured fistula. I have always been terrified of fistulas and so I wasn’t particularly happy to lose the safety net of the line, but the nurses were very supportive and helped me through it.” After Alex’s cardiac arrest, his dialysis days were changed and he was assigned to another new doctor, bringing his total to four doctors in two years. “I’m now stable, healthy and happy on HD with my fistula. I spent six months on the transplant list and the paired scheme to no avail. I came off the transplant list in June to ensure I would be able to start Uni this September. I was able to attend the British Transplant Games this year in Coventry and once again I had a blast. I am so pleased to have started at Med School in September this year after a two year wait. I am taking on my studies whilst on dialysis.”

Men in tights!

Alex's journey has been challenging, but he has persevered through difficult decisions, changes in care teams, and setbacks. His story’s a reminder of the resilience of kidney disease patients and the importance of support from healthcare professionals, patient support services, family, and friends. We wish Alex the best of luck with his studies.

Enjoy a revitalizing vacation with d.HOLIDAY, Diaverum’s holiday dialysis programme. Our 23 dialysis centres in Italy are waiting for you! Come to enjoy and discover sunny beaches, culture and gastronomy in beautiful Italy.

Scan the qr-code to download the Italy tourist guide

HELPLINE 0800 169 0936 | www.kidney.org.uk | Winter 2023 | 19

News &Time Puzzle Events

PUZZLES

If you’ve got a few minutes to spare, put your feet up and have a go at our puzzle!

WORDSEARCH

This issue’s wordsearch continues our ‘Autumn into Winter’ theme. There’s a lot of words to find but some very short ones. Have fun and good luck!

1. ACORN 2. BLACK 3. BONFIRE NIGHT 4. BOO! 5. CAT 6. CHILLY 7. COLOUR 8. CONKER 9. COSY 10. EQUINOX 11. FIREWORKS 12. FLEECE 13. GUY 14. HALLOWEEN 15. HARVEST 16. HIBERNATION 17. LEAVES 18. MIGRATION 19. OKTOBERFEST 20. PUMPKIN 21. SAMHAIN 22. SNOW 23. THERMALS 24. TREAT 25. TRICK 26. WALKS 27. WINTERISCOMING

A FEW INTERESTING FACTS ABOUT THIS TIME OF YEAR • Samhain is the ancient Celtic festival celebrating the end of summer and the harvest and is the origin of our Halloween. • “Stingy Jack”, a bad person, tricked the devil and cheated death three times. He couldn’t go to heaven and the devil wouldn’t let him into hell. He was forced to wander Earth for eternity and his ember-lit gourd lights his way – today’s pumpkins. • Black cats are associated with bad luck being linked to witches and black magic. They're always the last to be chosen at cat rescues. Ed: But here’s Boo – my black cat who is a rescue and fabulous – and he knows it! • The term ‘equinox’ comes from the Latin meaning ‘equal night’. • Migrating Arctic Terns travel 11,000 miles to reach their winter destination. • Oktoberfest in Munich, Germany began as a celebration of a prince’s wedding in 1810. It’s carried on ever since and now around 5 million litres of beer are drunk each year during the festival. • The yellow and orange colours we see in leaves is always there but during summer months is overpowered by the green from chlorophyll which decreases as the sun weakens and the days grow shorter. • More babies are conceived during autumn and winter – possibly due to the fact we spend more time in bed because it’s cold and dark. 20 | Winter 2023 | www.kidney.org.uk | HELPLINE 0800 169 0936

Combine top quality dialysis treatment with amazing holidays, on the island of Rhodes Dialysis Centre is a state-of-the-art dialysis unit, located within the Euromedica General Clinic of Rhodes, in Greece, that complies with European standards of health and safety while providing quality dialysis services in a modern setting. The centre is located just 10 minutes from Rhodes town, 4Km from the resort of Kallithea and 9Km from the popular resort of Faliraki.

We accept the European Health Insurance Card (EHIC)

euromedica-rhodes.gr

News & Events

Planning Your Legacy Free Will Writing Service We've partnered with FreeWills.co.uk to provide all our supporters with the opportunity to make their own fully comprehensive will for free. You can make your personalised will online in three simple steps, from the comfort of your own home and with live support from their will specialists. Find out more at https://freewills.co.uk/charity/nkf

Some of the most common ways of leaving a gift in your will are: Pecuniary Legacy - A fixed sum of money. Specific Legacy - A specific item of value, such as an item of property, a piece of jewellery or a painting. Residuary Legacy - The whole or a percentage of your estate after providing for loved ones and covering administrative expenses.

Easy steps to making or changing your will Draw up a list of your assets. Decide who you would like to receive a gift in your will and what you would like them to receive. Decide who you would like to be your executors and arrange a meeting with your solicitor. Keep your will safe and tell a family member where it is. If you have already written your will but would like to add a gift to the national kidney federation – what do I need to do? Your solicitor or legal advisor will draw up a codicil for you – this is a simple amendment to a will. This shouldn’t be expensive but we recommend that you consult a solicitor or legal advisor to ensure that the document is worded correctly and legally binding.

Do I need a solicitor? The charity has teamed up with Free Wills, the process of making your will is made extremely simple. There are no visits to the solicitor; it can be on line, on zoom or over the phone and at no cost to you. With FreeWills.co.uk award-winning online service, you can make a free, legally-binding will in just fifteen minutes. Each will is checked by legal experts and your will can be updated quickly and easily for free, forever. There’s no obligation to leave a gift to us, but we do hope you do so to enable us to continue our important work in supporting kidney patients.

For more details or to start making a will please visit https://www.freewills.co.uk/charity/nkf or 0333 188 5688 stating The National Kidney Federation Free Wills.

22 | Winter 2023 | www.kidney.org.uk | HELPLINE 0800 169 0936

freewills

Glossary

Health & Nutrition

LEMON & LIME DRIZZLE CAKE

a recipe on p100 from TASTE!

Just a little slice goes a long way with this cake – it’s beautifully moist and packed full of flavour. To turn it into a quick dessert, simply serve with some drained tinned blackberries and a dollop of crème fraiche. However, if you’re worried you can’t resist the cake, simply slice and place in between sheets of parchment into a sealable container. Keep in the freezer for up to three months. Take a piece out at a time and leave to defrost for one hour at room temperature.

Ingredients for topping

Ingredients 125g softened butter 125g caster sugar 2 eggs 1 lemon

I made this lovely cake. A bit different to my Mother’s recipe, the lime definitely adds some zing! It needed a little longer in the oven, but tasted fabulous and didn’t last 24 hours. Annie (Editor)

1 lime ½ tsp vanilla extract 125g self-raising flour 50ml semi skimmed milk

80g icing sugar 1 tbsp lemon juice 1 tbsp lime juice

1 lemon, zested 1 lime, zested

SWEET TREAT

Method 1. Preheat 180°C, fan 160°C, gas mark 4. Grease a 1kg loaf tin then line the base with parchment paper.

Ready in about 40 minutes Serves 12

2. Tip the butter and sugar into a large bowl and beat until light and fluffy. 3. Beat the eggs in, one at a time, then zest and juice the lemon and lime into the mixture and mix well – don’t worry if it looks curdled! 4. Fold in the flour and mix until combined then stir in the milk until you have a thick spoonable batter. 5. Pour into the prepared tin and bake in the oven for 35-40 minutes until golden brown and just risen. To check the cake is cooked through, insert a skewer in the centre of the cake – if it comes out clean, the cake is cooked, if not return to the oven for 5 minutes and check again. 6. While the cake bakes, make the toppings. Sift the icing sugar into a bowl, stir in the lemon and lime juices and mix until smooth. 7. When the cake comes out of the oven, pour half of the icing over the top. Leave to cool in the tin until totally cold. 8. Remove and peel off the parchment then place onto a serving plate and pour the remaining icing over the top. Zest the lemon and lime over the top and serve.

HEALTHY EATING FOR A MODERN LIFESTYLE This book is an incredible collection of inspiring, full flavoured recipes, not only for people suffering with kidney complications. The dishes are flavoursome, wholesome and tasty so that everyone will enjoy them. A must-read book full of nutritionally balanced recipes for everyone looking for a healthier lifestyle. TOM KERRIDGE A good balanced diet is essential to good health, and especially so for kidney patients. This book is creative and allows kidney patients to stick to their diet but at the same time, enjoy eating healthy nutritious food. PROF DAVID FOSKETT MBE Chair of the International Hospitality Council

LY N OW O N

£5

Increasingly, over recent years, we have been made aware how important it is to for our own sustainability, to eat a healthy and nutritious diet. As chefs, we are constantly striving to create and cook food which is exciting to eat. Now at last we have a book that does both. Try these wonderful recipes, enjoy and live life to the full! BRIAN TURNER CBE

TASTE!

HEALTHY EATING FOR A MODERN LIFESTYLE

This book is a really lovely read. The selection and variety of recipes are unique. It is a fantastic book not only for kidney patients but families everywhere wishing to reduce their salt, fat and sugar intake. PAUL RANKIN

Lawrence Keogh is one of the best chefs I have worked alongside in the kitchen. His love and appetite for cooking is boundless, as much as it is infectious, for those around him. I have huge admiration for the attention to detail he has put into this book and typical of Lawrence’s generosity, he wants to share the discovery of these delicious recipes with the reader. CHRIS GALVIN Chef/patron Galvin restaurants

Good nutrition is one of the cornerstones for our health, but having a health condition with restrictions on what you can eat, makes it a lot harder. Having a book like this speciﬁcally for kidney patients is such a valuable resource. PRIYA TEW Specialist Dietitian from Dietitian UK, BSC (Hons), PD Dip, MSc I applaud Lawrence for his determination and perseverance through his kidney disease diagnosis, working not only as Patron of the National Kidney Federation but also in putting together this wonderful cookbook for the NKF charity, to better support and improve the lives of kidney patients across the UK. The sheer variety of delicious, nutritionally-balanced recipes is brilliant, and have been designed for kidney patients and healthy eaters alike. The recipes span a range of cuisines and are suitable for any hour of the day. There’s something for everyone – I might even be cooking a recipe or two for myself! MICHEL ROUX JR

RRP £15.00

The Renal Nutrition Group of the British Dietetic Association has provided general comments on these recipes, to ensure that they are kidney friendly.

Amgen have provided a grant for funding

Lawrence Keogh and Janet Brinkworth DEVELOPED WITH KIDNEY PATIENTS IN MIND

To purchase a copy of our cook book please visit: https://www.kidney.org.uk/shop/nkf-cook-book

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This Christmas, remember a loved one you have lost by writing a message on the star, for us to hang proudly on our Christmas Tree.

Please send to: National Kidney Federation The Point, Coach Road, Shireoaks, Worksop, S81 8BW

If you can, please send us a donation with your star so that we can help to give kidney patients a brighter future

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Many thanks and best wishes for Christmas and the New Year from all at the NKF Charity Nos. 1106735 SC049431 Company No. 5272349 Registered in England & Wales