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KIDNEYLIFE AUTUMN 2021 ISSUE

The magazine of the National Kidney Federation

SCALING NEW HEIGHTS Taking on a challenge and giving something back!

Virtual patients' event 2021 Join us for our annual NKF patients' event Charity Nos. 1106735 SC049431

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Goodbye Pauline Retiring after 14 years at the NKF Page 12

NKF home dialysis campaign Update Page 06


Editor’s Note

Welcome to the autumn Kidney Life 2021

In this ISSUE... YOUR STORIES

04 My transplant changed my life 10 Scaling new heights to support people with kidney disease 16 Pregnancy, COVID and CKD

NEWS

03 Virtual Patients' Event 2021 12 Time to hang up the phone for Pauline 15 Covid-19 Question Time webinar: An update on vaccinations 20 Best foot forward

HEALTH

Hello, Outdoor spaces have become very familiar over the past year and I hope, that like me, you have enjoyed the warmer summer days. As we approach the end of summer, more changes and restrictions easing, we might all need to take a moment to reset and gather our thoughts as we head into autumn. In this issue, we are delighted to announce our NKF Patients' Event, being delivered virtually on 9 October 2021. Register now and book your spot. We provide an update of the NKF campaign to increase home dialysis – possibly the most extensive campaign the NKF has led (page 6). We share two inspirational kidney patient stories. Emma Constantine explains how an unusual rash on her legs was the first sign of kidney disease (page 4) and Ellinor Lyon talks about becoming ill as a young child and going on to have a baby of her own (page 16). Catch up with consultant transplant and vascular surgeon, Jeremy Crane, who discusses ‘vein preservation’ (page 8). And after 14 years at the NKF, we bid a fond farewell to Pauline, our helpline advisor. If you have ever spoken to the charity for help, support, or to request an NKF leaflet, it is likely you have chatted to Pauline – she will be greatly missed (page 12).

06 The NKF campaign to increase home dialysis 08 Vein preservation – A transplant surgeon’s perspective

NUTRITION 14

Asian Salmon and Vegetable Broth recipe

FUNDRAISING 18 Get involved

PUZZLES

22 Autumn word search / Spot the difference

GET IN TOUCH

If you’d like to share your story, we want to hear from you. Please email the editor at: kidneylife@kidney.org.uk

KEEP UP TO DATE www.kidney.org.uk @KidneyNKF @NKF_UK @nkf.uk

Thank you to everyone that has been in touch and sent in a contribution. As always, enjoy the read and get in touch if you have something you would like to share.

Nichola Rumboll Editor

Supported with a financial contribution from Vifor Pharma UK. Vifor Pharma has no control over the content of this publication.

NKF OFFICERS Chairman Jim Higgins, Northants KPA Vice Chairman Brian Child – North East KPA Treasurer Michael Sinfield – Six Counties KPA Secretary George Palmer – Exeter & District KPA President Kirit Modi Patrons Lawrence Keogh and Nina Wadia

HELPLINE0800 169 09 36

NKF officers and executive members do usually belong to a KPA, but offer their services to NKF as individuals. As such, NKF recognises that views expressed by its officers and executive members are expressed as individuals and do not necessarily represent the views of their KPA.

All CALLS to the NKF Helpline are FREE of charge


Autumn 2021

Virtual Patients' Event 2021 SAVE THE DATE! We invite you to join us Saturday 9 October 2021 10am to 2pm

for our annual event on 9 October 2021. This year's event is entirely virtual, meaning you can enjoy the speakers from the comfort of your home whilst joining together online with other kidney patients to hear insights and content designed just for you. We have a wide range of engaging and informative patient and professional speakers lined up.

JOIN US

To book your FREE place please register online at: https://www.kidney.org.uk/ Event/nkf-patients-event-2021 or by contacting us on 01909 544 999 or nkf@kidney.org.uk

Thank you to the event sponsors:

MAIN SPONSOR

Registered Office: The Point, Coach Road, Shireoaks, Worksop, Nottinghamshire S81 8BW T: 01909 544999 E: nkf@kidney.org.uk Charity Nos. 1106735 SC049431 Co. No. 5272349 reg. in England & Wales Give as You Earn contribution No. CAF.GY511

Our Helpline is free of charge to call on 0800 169 09 36 The NKF runs the only UK Helpline dedicated to kidney patients, with over 200 unique and regularly updated information leaflets and two fully trained, experienced advisers providing a 5 day a week service to kidney patients, carers and healthcare professionals. The NKF Helpline is open from 9am until 5pm Monday to Friday on 0800 169 09 36 e: helpline@kidney.org.uk

If you want to raise funds for the NKF, plan an event, make a donation to the NKF or discuss leaving a legacy to the NKF please contact Pete Revell (NKF Head of Marketing and Fundraising).

T: 01263 722287 E: pete@kidney.org.uk


Your NewsStories & Events

My transplant changed my life

By Emma Constantine

When Emma Constantine discovered a rash on her legs she had no idea that just a few months later she would be diagnosed with end-stage renal failure. Emma shares with us her transplant story. I was healthy throughout my entire childhood when unexpectedly in October 2002, at the age of 17, an unusual rash appeared on my lower legs. I became extremely sick, vomiting most days and I lost around three stones. Despite meeting with a dermatologist, gastroenterologist and even an eating disorder specialist, no one could discover what was wrong with me.

I was told I would need a transplant My kidney function was enough that I could continue for a little while with medication and controlling my diet. I was not a fan of giving up all my favourite snacks – no potassium for me!

And then, in summer 2003 my kidneys started to need help and my options for dialysis were explained. After discussions with my parents, I decided to go for CAPD (Continuous Ambulatory Peritoneal Dialysis) as I was still at school and doing my A-Levels and this seemed like a good fit. I didn’t I saw the consultant at the satellite unit at Medway like the idea of having a fistula (call me squeamish!) Hospital in Gillingham, who explained that I would so I was fitted for my CAPD tube at Kent and need a biopsy to determine what had caused my Canterbury Hospital and taught how to do my bag failure. This was carried out at Kent and Canterbury change-overs. I was given a machine so I could do Hospital in March 2003, just after my 18th them overnight whilst I slept, and I only had to do birthday. I discovered that I had suffered vasculitis one bag during the day, which was great. I was aware (inflammation of the blood vessels) in my kidneys. It of the risks of my CAPD tube and during this time I, had caused the unexplained rash, but because I was unfortunately, caught Peritonitis –it was very painful. so young, kidney problems hadn’t been considered a possibility. They couldn’t tell me what had caused We had also decided I was going to receive a living related kidney donation from my mum. Both my it (and still can’t), only that it had come and gone parents were a match, but my dad would need to and taken my kidney function with it. take time off work so we felt it made more sense for my mum to be the donor. The date was set for Guys Hospital on 20 February 2004, the same day as my Grandad’s birthday. It wasn’t until January 2003 when the gastroenterologist did a check on my kidneys that they discovered my function was down to 15%. I had entered end-stage renal failure and I had to ask what ‘renal’ meant.

Just a few weeks before we had a little scare. My blood was showing signs of an infection and my wisdom teeth were suspected. I was sent to the orthodontist who, God bless him, told me, “You’re going through enough, I’m not taking your wisdom teeth out too.” Phew.

Emma and boyfriend Matt

4 | Autumn 2021 | www.kidney.org.uk | HELPLINE 0800 169 0936


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I had entered end-stage renal failure and I had to ask what ‘renal’ meant.

It was decided that the transplant would still go ahead. My parents and I travelled to London, arriving the day before for a pre-check-up and blood tests and I was given cyclosporin to take before the operation. It made me very sick, but I soon got used to it. Mum went down for her op first whilst I sat with Dad. We were all very nervous. I went down about two hours later. The surgery took around six hours and the first thing I remember after waking up is saying, “I need a wee!” I spent the next seven days in hospital before returning home – my mum left hospital the day before. I was very lucky, no rejection at all and I have continued to be lucky ever since with just one stay in hospital for sepsis (caused by a UTI), it was caught early and I have stayed pretty stable.

Life goes on My transplant has enabled my life to move on. I started at Winchester University 18 months after my surgery and studied dance for three years, arranging my appointments whilst I was at home in Kent. I got married in 2018 and my husband and I are thinking about trying for a baby, but we are in no rush. I no longer take MMF in anticipation and have been fine on azathioprine. I am focused on my weight, which is a constant battle for me, but my blood sugar is creeping up to within pre-diabetic levels and I am working hard to get back down to normal levels - I do not want to go through this again anytime soon! The kidney donated to me by my mum is still pumping away and stable. It is now 17 years and I am so, so grateful that I have been lucky enough to have found such a good match - people always say me and mum are alike! I remain thankful to my parents, to the NHS and the renal unit at Kent and Canterbury Hospital.

All smiles - Emma and mum HELPLINE 0800 169 0936 | www.kidney.org.uk | Autumn 2021 | 5


Health News & Events

The NKF campaign to increase home dialysis The NKF campaign to increase home dialysis in the context of Covid-19 is going well and we will be following up on the recommendations published in our report ‘Increasing home dialysis in the context of Covid-19 in the UK’ published in January 2021. The campaign is being coordinated by a group of executive members and NKF staff, chaired by Brian Child. A progress report will be published early in 2022.

KPA chairpersons

New resources

Our aim is for all adult renal units in the UK to provide us with a plan that will result in a minimum prevalence rate of 20% home dialysis provision by 2024. We have requested KPA chairpersons raise this matter locally (no later than autumn 2021) with their director of renal services. The NKF has also received updates on progress from a small number of KPAs.

A new leaflet on home dialysis in the context of Covid-19 will be available in September 2021 – it is a welcome addition to our patient information library and can be found on the NKF website in our Home Dialysis Resource Centre: https://www.kidney.org.uk/Pages/Category/ home-dialysis

New home dialysis peer support service A new home dialysis national peer support service is set to launch in September 2021 following the training of a group of home dialysis patients and carers as peer supporters. We urge clinicians to refer patients to this national service, and we encourage patients thinking about moving to home dialysis to self-refer. The peer support service will be run by the NKF Helpline, you can access information by calling 0800 169 09 36. We are happy to work with peer support services that are already running in some areas of the country, please get in touch to see how we can work together.

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A series of new home dialysis patient/carer videos, highlighting their experience during Covid-19, will be available in late autumn 2021.

Patient survey In partnership with the University of Hertfordshire, we will survey dialysis patients in autumn 2021, to find out more about the barriers to home dialysis and their experience of Covid-19.


Autumn 2021

We are happy to work with peer support services that are already running in some areas of the country, please get in touch to see how we can work together.

Policy areas

Conclusion

We are actively involved in the recently launched Renal Services Transformation Programme. One of the workstreams is on dialysis and through this work, we will highlight our concerns about home dialysis.

Our campaign to increase home dialysis in the UK is possibly the most extensive campaign the NKF has led. Covid-19 has shown that patients who dialysed at home were able to protect themselves better from infection and death compared to patients who dialysed in a hospital or unit. Increasing dialysis at home for more patients is supported by the NHS, but progress to date has been limited and we need everyone’s support with this campaign. If you can help, please contact us.

The NKF has been invited to speak at several national conferences, including the UK Kidney Week in October 2021, to talk about home dialysis. We have also written to the Health Ministers of the four devolved nations requesting their response to our report.

New data We are working with the UK Renal Registry and will publish the latest data on home dialysis provision by centre. The data will include changes in provision over time as well as how provision for BAME patients compares with other patients.

Covid-19 has shown that patients who dialysed at home were able to protect themselves better from infection and death compared to patients who dialysed in a hospital or unit.

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Health

A transplant surgeon’s perspective

VEIN PRESERVATION By Jeremy Crane

‘Vein preservation’ is an area of practice that all patients with kidney disease, and all healthcare professionals looking after patients with kidney disease, should be familiar with. It is often not given the credence it deserves across many of our renal departments around the country. So, what is vein preservation? It is a simple concept. It is about preserving and protecting the important veins in the arm that are needed to make a successful arteriovenous 'fistula' for dialysis. Every time a patient has a blood test or an IV line in the arm, it damages the veins. Repeated blood tests cause progressive scarring to the veins. People with chronic kidney disease have so many blood tests for monitoring their kidney function and for other reasons, and as a result, their veins can get damaged over time. If the veins are damaged and that patient needs a fistula, it might not be possible – the ideal is that those patients needing dialysis have a strong, healthy vein in the arm. OK – that is a lot of information, let’s go back a step! What is a fistula? It is a way to access the bloodstream – also known as a ‘vascular access’. A fistula is created when an artery and vein, usually around the wrist or at the elbow crease is surgically joined together. This results in a strengthened vein, or what I like to call, a ‘super vein’. This vein is strong enough to withstand dialysis needles being inserted several times a week and facilitates successful dialysis. The fistula is the gold standard and best form of vascular access in most patients needing haemodialysis.

So vein preservation and the creation of a successful fistula for dialysis are closely linked. An important aspect of vein preservation is that as a patient if you haven’t been told about it or had some form of education, how would you know how to preserve your veins? Well, this is a question I realised was an important factor in explaining why many patients and healthcare professionals were not promoting vein preservation in their respective hospitals. This was the catalyst for the ‘Save Your Vein’ campaign which I co-founded with Dr. Christine Hall a few years back. We realised that we needed to have early conversations with patients about vein preservation, way before they needed dialysis. This also gave our patients empowerment to be able to carry out vein preservation and also to explain the concept to their health professionals including the phlebotomists, renal nurses and renal physicians. The concept is straightforward and not at all complicated. Whenever possible a blood test should be taken from the veins at the back of the hand, not at the elbow crease. This is possible in most patients and an experienced blood-taker should have no problem doing this. If there are simply no veins at the back of the hand then blood tests should be taken from the elbow crease, alternating between the left and right arm.

...many patients and healthcare professionals were not promoting vein preservation in their respective hospitals.

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Jeremy Crane MD FRCS (vasc) Consultant transplant and vascular surgeon at the Hammersmith Hospital West London

Save Your Vein

It was created as an awareness campaign to educate and empower patients with renal disease and teach healthcare professionals the importance of vein preservation. When we started in 2014, the campaign was incredibly well received by patients and staff locally – it is simple and effective in increasing knowledge and awareness amongst patients and healthcare groups. We aim to increase knowledge and improve the practice of vein preservation – and have created a website www.saveyourvein.org the first of its kind dedicated to vein preservation in kidney disease. We presented the campaign at national and international conferences and we were always delighted to be received with great enthusiasm and a willingness from other kidney units to share the campaign. We made patient alert cards, lanyards, posters, leaflets and a patient wristband. We are in the process of giving these out and measuring the positive outcome from patients and healthcare professionals having these materials. The Save Your Vein campaign became part of KDOQI guidelines for kidney disease in 2020 – KDOQI stands for Kidney Disease Outcomes Quality Initiative and it is a broadly accepted clinical practice guideline that is respected worldwide. If you have any questions about vein preservation, please visit the Save Your Vein website for information. Then, please tell other patients with kidney disease that they should start preserving their veins!

Keep in touch @JeremyCraneMD www.transplantandvascular.com

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Your NewsStories & Events

Scaling new heights to support people with kidney disease Taking on a challenge and giving something back became the focus for a mother and daughter from York, who, following their own transplant journey, stepped up to scale the highest mountain in the UK and help support people living with kidney disease. Steph and Milly Marley, from Elvington, decided to climb Ben Nevis in Scotland to raise money for the National Kidney Federation (NKF), only two years after Milly received a lifesaving kidney transplant. When Milly was born, she developed acute kidney failure due to birth complications. Milly’s mum Steph explained, “We very nearly didn’t get to keep our beautiful baby girl,” said Steph. “Milly is a fighter and with the amazing care she received from the doctors and nurses, she made it.” Milly lived with chronic kidney disease until she was 15 and needed a transplant.

According to the UK Renal Registry, nine children in every million under the age of 16 starts long-term treatment for kidney failure. Thumbs the word - Milly and mum Steph giving a thumbs up after they reached the summit of Ben Nevis

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A life-saving gift Milly received a kidney transplant in December 2018 at Leeds General Infirmary after her dad was found to be a match. She is now stable and well following a year of post-transplant complications and prolonged hospital stays. The York College student now has the chance to live a healthy life and is looking forward to starting university later this year. Steph commented, “We are ever grateful to her dad for this gift of life that he gave her, and despite all the difficulties, I am so proud of what she has achieved.”

Time to give back After being on their transplant journey, Milly and Steph knew they wanted to raise funds to help others in a similar situation. They found the NKF’s fundraising climb up Ben Nevis and decided this was the perfect opportunity to give something back. And on 19 June 2021 they did just that. Steph and Milly climbed the UK’s highest mountain and reached the summit, 1,345m above sea level!


Autumn 2021

Cheers! Much needed refreshments at the end of their trek

Thank you from the NKF Head of marketing and fundraising at the NKF, Pete Revell, explains just how important fundraising activities like this are. “With everything that’s happening in the world at the moment, it is so nice to hear a story like this. Milly has conquered kidney disease with the help of her father and now with the help of her mother she has conquered Ben Nevis. “We arrange many fundraising activities and events to help people set personal challenges and achieve some amazing things, and their support for the NKF is amazing and much needed. Thank you!”

Milly has conquered kidney disease with the help of her father and now with the help of her mother she has conquered Ben Nevis.

FANCY IT?

MAKE A DONATION

Check out our NKF events page and see if there is a fundraising challenge for you: https://www.kidney.org.uk/Pages/Events/

Milly and Steph have smashed their original fundraising target of £1,200 but are determined to raise as much as possible. If you would like to support them please do so here: www.justgiving.com/ fundraising/marley-team

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News & Events

Time to hang up the phone for Pauline After fourteen years at the National Kidney Federation, helpline advisor Pauline Pinkos is about to hang up the phone and divert her attention to retirement. Pauline shares with us a few tales from her time working with the charity. By Pauline Pinkos I started working for the NKF on my birthday in October 2007 as assistant helpline manager. Back then, the charity was run from a three bedroomed house in Worksop and the front bedroom was my office that I shared with the helpline manager. These premises quickly became too small for the growing charity and by April 2008 we moved to the current NKF offices.

Who calls the helpline and why? Patients and carers are the most frequent callers. When you receive a diagnosis of chronic kidney disease the questions you want to ask don’t always come to you before the end of your appointment and being able to ring someone to talk things over is a very welcome service. Although we would never claim to be medically qualified the helpline has a growing library of medical information written especially for the NKF by Professor Rob Higgins of Walsgrave Hospital. This information is our ‘script’ and if we ever need additional information there are medical professionals on hand to help us. Information is available in the form of patient leaflets and over the years titles have grown from six information leaflets to over 150, written in simple language directed at patients.

What support do you most frequently offer? I had to learn quickly all about kidney disease, dialysis, transplantation and kidney donation and just about everything relating to kidneys. This ranges from dealing with a new diagnosis of kidney disease to end-stage kidney failure, the strict dietary and fluid restrictions that go with this disease, along with the impact of a diagnosis on family and friends. 12 | Autumn 2021 | www.kidney.org.uk | HELPLINE 0800 169 0936

Has your role changed over the years? The role of the NKF Helpline has not changed very much at all. Our approach seems to be a winning formula and the excellent feedback we receive is proof of that. With the advance of technology, we have adapted to greater contact through email and online chat, but our free to call Helpline is as popular as ever because ‘one size fits all’ does not apply to chronic kidney disease and sometimes calls can last around an hour.

What qualities are required to do your job? I think you need empathy, understanding and experience of what life can unexpectedly throw at you. People can panic about what might be happening and calm reassurance is essential. Occasionally calls can be very challenging or sad, and it is essential to show compassion and never to judge.

Most memorable moment Picking up the phone and realising that I was talking to an individual who is in the public eye – over the years I have assisted one or two household names!


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Most proud moment

What are you looking forward to?

I once spoke to a person with a very rare condition – she was seeing an endocrinologist and a nephrologist but getting the correct treatment was trial and error for this lady and her medical team. Several months later another lady rang the helpline with the same rare symptoms and her medical team were also struggling to manage the numerous symptoms which were affecting the kidneys. I arranged for the two ladies to support one another by telephone and it seems that this was very good for the medical teams too in trying to manage the varying symptoms.

I enjoy knitting and crafts, reading and tracing family history, and I have a novel inside me bursting to get out! I plan to see much more of my grandchildren and become a ‘lady who lunches’ with my family and friends. I also hope the garden will be less of a jungle. As they say, ‘however did I find the time to work?’ That said, I am more than happy to be leaving the Helpline in the capable hands of my colleague Stephen who has all the qualities needed for the job.

What will you miss? I will miss the people who created the NKF and the people who will carry it forward into the future. When I joined the NKF I was the youngest in the team. Over the years people have come and gone, some due to retirement and some who are no longer with us, and there are many people I will miss who have been helpful and supportive to me. Today I am the ‘granny’ of the team. The younger ones are helpful and supportive to me – setting up Zooms and databases – and I hope I have been able to share my experience and knowledge with them in return.

HELPLINE

0800 169 09 36

From everyone at the NKF, we wish you a wonderful retirement, you will be greatly missed!!!!

Pauline will soon be hanging up the phone after 14 years at the NKF

NKF Helpline

In 2020 our Helpline advisors spoke to over 5,000 callers. Our service is unique, as it’s the only free UK helpline dedicated to kidney patients and their carer’s with a huge library of over 150 medical information leaflets, written by nephrologists in plain English that are easier for patients and carers to understand. If you would like to speak to an advisor don’t hesitate to get in touch, call 0800 169 0936.

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News &&Events Health Nutrition

Asian Salmon and Vegetable Broth

Vibrant and flavoursome Asian meal.

Simmering the base liquids for 20 minutes to start with makes all the difference to this dish – the ingredients intensify into a flavoursome Asian broth. The veg and salmon then don’t take very long at all to cook – leaving the soup for 5 minutes with the heat off and lid on, means that the salmon won’t over cook. Ready in about 30 minutes Serves 4

MAIN COURS E

Ingredients 1 reduced salt vegetable stock cube 50ml reduced fat coconut milk 2 tbsp mirin 2 limes, zested and juiced 3 sticks lemon grass, lightly crushed 2 star anise 60g stem ginger, roughly chopped 1 tbsp stem ginger syrup 100g beansprouts 1 red pepper, seeded and finely sliced 1 x 225g tin water chestnuts in water, drained and rinsed 1 x 410g tin baby corn, drained and rinsed 400g salmon fillet, skinned and cut into 3cm cubes 180g fine rice noodles 1 tbsp roughly chopped coriander leaves

Method 1. Fill a large saucepan with 1 litre of water, then add the stock cube, coconut milk, mirin, lime zest and juice, lemon grass, star anise and stem ginger and bring to the boil. Reduce the heat and simmer gently for 20 minutes until the flavours have infused the stock, but not reduced the volume. 2. Add the beansprouts, pepper, water chestnuts and baby corn, return to the boil and simmer for 2-3 minutes until hot through and the peppers just tender. 3. Add the salmon and simmer for 2 minutes then turn the heat off, cover the pan with a lid and set aside for 5 minutes. 4. Meanwhile, tip the noodles into a heatproof bowl, then pour enough boiling water over them to cover totally. Stir once then leave to soak for 3 minutes until tender. 5. Drain and divide between serving bowls, then spoon the vegetables and salmon over the top, finishing with the broth. Scatter with the coriander and serve straight away.

TASTE! COOKBOOK DEVELOPED WITH KIDNEY PATIENTS IN MIND FIND OUT MORE

The NKF is proud to have this wonderful and inspiring cookbook that is suitable for kidney patients and their families. If you are looking for healthy eating ideas that are enjoyable and tasty, you can buy the cookbook here: www.kidney.org.uk/shop/nkf-cook-book

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Covid-19 Question Time webinar: An update on vaccinations How well are vaccines working for kidney patients? How can I keep myself safe after I’ve had the vaccine? What should I do if I feel anxious about restrictions easing? At a recent webinar, delivered in partnership with National Kidney Federation (NKF) Kidney Care UK, Kidney Research UK, the PKD Charity, and the UK Kidney Association, we heard a panel of experts from renal medicine answer questions about how people with suppressed immune systems and CKD are responding to the Covid-19 vaccines, as well as a discussion about returning to normal activities and coping with anxiety as restrictions ease. Speaking at the event, Dr Andrew Frankel began by acknowledging the difficult time kidney patients have experienced during the pandemic. He outlined three main areas of change – the emergence of the Delta variant and the implications of this, the successful vaccine, and how kidney patients can begin to emerge from this period of lockdown.

Here is a summary of the areas discussed: • Delta variant is now the dominant variant in the UK with convincing evidence that it transmits more easily than other variants. At the moment, there is no evidence to suggest the Delta variant poses a greater risk to kidney patients or people using immunosupression, but two doses of vaccine does increase your protection. • Children, including children with kidney disease, are less likely than adults to develop severe Covid-19 or suffer complications from the virus. • Laboratory studies show that people with kidney disease who do not receive immunosuppression have been shown to have a good antibody response, whilst those on immunosuppressant drugs have weaker responses, this is expected, and it does not necessarily mean people are not protected from severe illness. • Doctors do not advise people take an antibody test outside of a research study – it is not clear what the results mean in terms of protection, so it is not considered a helpful guide. It will take more time to understand what antibody levels mean in terms of protection from severe disease. • Clinically extremely vulnerable people are no longer advised to shield but they should continue to be cautious and take precautions. • People returning to work are entitled to a comprehensive risk assessment and employers must ensure that workplaces are Covid-secure. • Those feeling anxious about restrictions easing should make changes at their own pace, resuming activities gradually and slowly.

Recommendations • Kidney patients are recommended to have both doses of vaccine and those taking immunosuppressant medication should encourage people they live with (who are eligible) to also have the vaccine. • If you have concerns at work, ask your employer to do a comprehensive risk assessment – and remember that support is available if you do not feel your workplace is Covid-secure. • Kidney patients are encouraged to take up the offer of the flu vaccine. Read the UK Kidney Association (UKKA) statement on the care of clinically extremely vulnerable (CEV) kidney patients after easing of COVID-19 restrictions on 19th July: https://renal.org/sites/renal.org/files/UKKA%20CEV%20 statement%2020%20July%202021.pdf Thank you to the panel of four kidney doctors: Dr Rebecca Suckling from Epsom and St Helier NHS Trust, Dr Andrew Frankel, Dr Steven McAdoo, and Dr Michelle Willicombe from Imperial College Healthcare NHS Trust.

Webinar delivered in partnership with:

MORE INFORMATION Visit the NKF website to keep up to date on the latest information and advice: https://www.kidney.org.uk/ news/coronavirus-latest-information-and-advice

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NewsStories & Events Your

Pregnancy, COVID and CKD by Elinor Lyon Murphy

Following a family holiday in Wales, three year old Elinor Lyon Murphy became desperately ill and was left with chronic kidney disease. Now, with a young child of her own, Elinor shares with us her decision to become pregnant. In 1988, aged just three years old, I was diagnosed with hemolytic uremic syndrome (HUS) after contracting E. coli whilst on holiday in Wales. I spent six weeks on life support and I was very lucky to recover. I was left with chronic kidney disease (CKD), which means my kidney function has been deteriorating incrementally ever since. I was prescribed ramipril, an angiotensinconverting enzyme (ACE) inhibitor that also regulates blood pressure.

30 years on... In 2018, my husband Luke and I were keen to start a family. My kidney function had been stable at around 25 eGFR for about 10 years, and after conversations with two renal consultants, we decided to try for a baby. We were advised that I couldn’t take ramipril whilst trying to conceive, or during pregnancy and breastfeeding. I was also told that I was at higher risk of developing pre-eclampsia which could mean delivering prematurely. It took around 12 months for us to conceive and in November 2019 I fell pregnant - the same week I began fertility acupuncture. I still don’t know whether it was a coincidence or not. Throughout my pregnancy, I was monitored weekly due to me being considered high risk. I was fortunate to have a relatively straightforward first and second trimester – I even managed to avoid morning sickness! At 36 weeks, my blood pressure and proteinuria began to creep up – both early indicators of pre-eclampsia. The baby was also breech, so my obstetrician decided to deliver by planned caesarean section at 36 weeks. I was a little bit disappointed as I had been hoping for a natural birth, but we were overjoyed to welcome our daughter Eva in July 2020 who was a healthy 6lbs in weight with a full head of hair.

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Autumn 2021

Happy family Elinor, Luke and baby Eva

Pregnancy, COVID and CKD

Facing the future

The experience of being pregnant during the coronavirus pandemic with CKD was undoubtedly challenging. Luke wasn’t able to join me for any of the scans or appointments and for the C-section itself, he was only allowed to join once the surgery was underway. I had to walk into the operating theatre and begin the procedure alone.

Eva is now eight months old and getting more cute and cheeky every day. Luke and I are besotted. I feel lucky to have lived a relatively normal life pre-motherhood and do all the things I wanted to do – study, travel and work - and we’re extra blessed to have conceived and given birth to a healthy, happy daughter. In April I discovered that my eGFR had fallen to 16 and that I now require a kidney transplant. I have begun the necessary tests to go on the transplant list, and my husband Luke will explore becoming my donor. Our plans for another baby are on hold until after the transplant. I feel weirdly calm and level-headed about it. I’ve lived my whole life knowing that this will one day become a reality and I’ve made my peace with it. That’s not to say it isn’t a big deal, but I have good support, feel well informed and for now, I just want to spend as much time as possible enjoying life with Luke and Eva.

The risk of catching Covid-19 was a huge concern. After the birth, I spent five days in hospital and visiting hours were heavily restricted. Eva also spent two days in the neonatal intensive care unit (NICU) to monitor her oxygen levels and we were only allowed to visit her for an hour each day. We live a long way from my parents, so they were unable to travel to meet Eva until she was four weeks old. Another caveat of my kidney condition was that they weren’t able to administer the usual pain relief for a C-section – they waited until I was on the operating table to tell me they could only give me paracetamol for pain relief afterwards! It was a rough week of recovery. Two days after going home I also had a scare when my blood pressure increased dramatically and I spent another two nights in hospital with Eva alongside me.

The experience of being pregnant during the pandemic with CKD was challenging.

HELPLINE 0800 169 0936 | www.kidney.org.uk | Autumn 2021 | 17


Fundraising Health News & Events

There are many ways you can make a difference and raise money to support kidney patients across the UK.

G£T INVOLVED Happy Christmas Merry Christmas

Happy MONE Y WALL Christmas ETS

Happy Christmas Happy Christmas

Giftwrap Artwork:Giftwrap

Artwork

22/8/11

Giftwrap Artwork:Giftwrap

Happy Christmas

12:47

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Happy Christmas

ORDE R FORM

Page 1

Happy

Happy Christmas The ideal way to give cash Christmas or vouchers as supplied with an envelop Happy e. 99p each. FREE postage gifts.Each wallet is Happy Christmas when ordered with Happy Christmas other items. Christmas Giftwrap Artwork:Giftwrap

Artwork

22/8/11

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PERSO NAL DETAIL S

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Product Title

CHRISTMAS BROCHURE Happy Christmas

Merry Christmas

Giftwrap Artwork:Giftwrap

Giftwrap Artwork:Giftwrap

Happy Christmas

Happy Christmas

Merry Christmas Happy Christmas

Happy Christmas

Merry Christmas Happy Christmas

Merry Christmas

Happy Christmas

Merry Christmas Happy Christmas

Happy Christmas

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Merry Christmas Happy Christmas

12. NATIVITY

Christmas

Merry Christmas Happy Christmas

Merry Christmas Happy Christmas

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Mr/Mrs/Ms/Miss

Merry Christmas Happy Christmas

Merry Christmas

Merry Christmas Happy Christmas

Postcode

Telephone No.

Merry Christmas Happy Christmas

Price

with envelopes

Merry Christmas

Email

3.

£3.50

4.

£3.50

Merry Christmas Happy Christmas

Merry Christmas

Happy Christmas

Happy Christmas

Merry Christmas

Merry Christmas Happy Christmas

Merry Christmas Happy Christmas

Merry Christmas Happy Christmas

Merry Christmas Happy Christmas

Merry Christmas

Merry Christmas Happy Christmas

Merry Christmas Happy Christmas

Merry Christmas Happy Christmas

Merry Christmas Happy Christmas

Merry Christmas Happy Christmas

15. REINDE MerryER GIFTWR AP Merry Christmas Happy Christmas Happy Christmas £2.40 Christmas Each Merry pack contains Merry Christmas Happy Christmas 4 sheets with Happy Christmas Christmas matching tags Merry

NKF PRODChristmas Merry UCTS Merry Christmas

Merry Christmas

Merry Christmas

Merry Christmas Happy Christmas

Christmas Happy Christmas

Merry Christmas

Merry Christmas

Merry Christmas Happy Christmas

Merry Christmas Happy Christmas

Merry Christmas

Merry Christmas

Merry Christmas

Merry Christmas

Merry Christmas

Merry Christmas

Merry Christmas

Merry Christmas

POSTA GE & PACKIN G

Merry Christmas

Postage & Packaging: 1 to 2 items £1.50 3-6 Items £3.50 7 + Items £4.00

Merry Christmas

Should any cards you order be out of stock and you would prefer not to receive an alternative , please tick the box provided.

16. STARS Merry GIFTWRAP Christmas £3.00 Each pack contains 5 sheets with matching tags Merry

Merry Christmas

£3.50

£3.50

Merry Christmas

CHRISTMAS COL LECTION 2021

£3.50

£3.50

10. Classmates

£5.00

11. Everyday Cards

£4.99

SAME GREAT QUALI TY AND NO PRICE INCRE ASE!

£4.99

12. **Nativty Money Wallets 13. **Penguins Money Wallets 14. **Robins Garland Money Wallets 15. Reindeer Giftwrap 16. Stars Giftwrap

£0.99

£0.99

£0.99

£2.40

£3.00

17. Cook Book

£7.50

18. Phone Power Bank

£6.49

19. NKF Pin Badge

(**FREE postage when

£1.50

ordered with other items)

Total Order

Yes, I am a taxpayer and extra cost to me. I would I want to increase my donation by 25% the tax on this donation like the National Kidney Federation to at no UK taxpayer, if you pay and any future donations I make. Note: reclaim the amount of Gift Aid less Income Tax and/or Capital Gains TaxAs a is your responsibility claimed on all your donations in that tax than to pay the difference. year, it

Christmas

Total

£3.50

Enclosed in this edition of Kidney Life is the 2021 NKF Christmas brochure, featuring some wonderful and high quality designs, and our prices remain the same as last year. We hope you like the selection as much as we do. Merry Christmas

Qty

£3.50

The Christmas Service - 10 cards with envelopes Wreath and Robins 10 cards with envelopes Father Christmas - 10 cards with envelopes 5 Peace Candles - 10 cards with envelopes 6. Toy Shop - 10 cards with envelopes 7. 12 Days - 10 cards with envelopes 8. Nativity Baubles - 10 cards with envelopes 9. 2022 Calendar

Address

14. ROBINS

Merry Christmas

Choirboys - 10 cards

2

Merry Christmas

13. PENGUINS

Merry Christmas Happy Christmas

1.

First Name

Surname

Merry Christmas Happy Christmas

Merry Christmas Happy Christmas

Merry Christmas Happy Christmas

22/8/11

Happy Christmas

Merry Christmas Happy Christmas

GIFT WRAPChristmas Merry Happy

Artwork

Page 4

Happy Christmas

Merry Christmas Happy Christmas

Merry Christmas Happy Christmas

Merry Christmas

Artwork

P&P Donation TOTAL

PAYME NT DETAILS

Please supply full name and address details otherwise your order office. We will do our may not be completed best to despatch orders . For overseas orders within two to three please contact the working days.

Merry Christmas

Cheque enclosed for Payment by Debit or

Merry Christmas

Credit Card

(made payable to: National

Name on card

Merry Christmas

Visa

Mastercard

Kidney Federation)

Other

Card No.

17. NKF CHARGING BANK £7.50

Issue Number CVV / Security Number Start Date Expiry Date Send payment to: National Kidney Federation, NKF, The Point, Coach Tel: (01909) 544999 Road, Shireoaks, Worksop, Helpline: (0800) 169 09 36 E-mail: nkf@kidne S81 8BW Company No 5272349 y.org.uk Website: www.kidne , England and Wales y.org.uk Charity Number 1106735 Scottish Charity Number I would like to receive SC049431 communication regarding the work of the NKF Post Email by: Phone

You can order by post, using the order form on the back of the brochure, or order online https://www.kidney.org.uk/shop 18. COOK BOOK £6.49

19. NKF PIN BADGE £1.50

www.kidney.org.uk - Helpline 0800 169 09 36 Registered Charity No. 1106735 - Scottish Charity No. SC049431 Company No 5272349

NKF CALENDAR 2022 2022 CALENDAR

ONLY

£5

The popular NKF calendar is now for sale! It not only has twelve fab photos of locations from across the UK, but space to write your important information and appointments – and thanks to our sponsors it only costs £5. GET YOURS NOW!

NKF CHRISTMAS DRAW Show your support to the NKF charity and buy some Christmas draw tickets… you never know, you could be one of the lucky winners – first prize is £1,500! You will find three books of Christmas draw tickets enclosed in this edition of Kidney Life, if you need more or have not received any tickets and would like some, please contact the NKF office on 01909 544999 and we will pop some in the post.

british kidney founation xmas 21_Layout

1 17/06/2021 14:07 Page 1

00001

00001 Name:

NATIONAL KIDNEY FEDERATION

Address:

Draw to take place 2021 on Wednesday 8th December

Postcode:

Tel No:

NATIONAL KIDNEY FEDERATION

Email:

Federation) cash and Cheques (payable to National Kidney Kidney Federation, counterfoils to be delivered to National Worksop, Notts, S81 8BW. The Point, Coach Road,Shireoaks, December 2021. To arrive no later than Friday 3rd complete the below If you wish to pay by debit card please details (Debit Card only). .................. .................. Debit Card No: ................... .................. Expiry Date................................ PLEASE DO NOT SEND BACK

CVC................... Last 3 digits on reverse

UNSOLD TICKETS

1st Prize: £1,500

2nd Prize: £750

3rd Prize: £500

under the Gambling Act of 2005. Licenced by the Gambling Commission 03. www.gamblingcommission.gov.uk S81 8BW. License No 000-004751-N-303128-0 Road,Shireoaks, Worksop, Notts Email nkf@kidney.org.uk Kidney Federation, The Point, Coach No 5272349. Tel 01909 544999 Promoter: Pete Revell, National Scottish charity No. SC049431Company Registered Charity No 1106735.

4th Prize: £250

£1 each Tickets be 16 years old or over. Players must

CHOCTOBER This is the sixth year we have indulged in Choctober…

...an event we all love! It’s very simple – all you have to do is ‘not’ eat chocolate for the entire month of October and encourage your friends and family to sponsor you. Flip to the back page for all the details of this year’s Choctober and if you need a fundraising pack please get in touch via nkf@kidney.org.uk or call 01909 544999.

18 | Autumn 2021 | www.kidney.org.uk | HELPLINE 0800 169 0936


Autumn 2021


News & Events

BEST FOOT FORWARD Earlier this year we introduced a new fundraising event called Best Foot Forward and we were overwhelmed by the response. Over 100 people took part and to date, you have raised over £25,000, which is a phenomenal amount!

Meena Jesani Meena took part in Best Foot Forward in memory of her husband, Najmu Jesani (Kaku), who passed away with kidney disease.

Meena walked all 60,000 steps in June and raised almost £7,000

Najmu Jesani (Kaku)

Fathima Sultan Mohamed Fathima saw Best Foot Forward advertised in Kidney Life and took part to support her son, Hamdhan Jazeer Ali, who has nephronophthisis.

As well as raising almost £3,000, Fathima is donating one of her kidneys to her son, providing him with the Gift of Life.

Zeina Fahmy Zeina walked all 60,000 steps in one day and raised £1,700!

Michael Wise Michael raised over £3,000 and on 10 June, completed the challenge and to date has walked nearly 100,00 steps!

20 | Autumn 2021 | www.kidney.org.uk | HELPLINE 0800 169 0936


Autumn 2021

Jim Bellingall Jim was diagnosed with kidney disease whilst serving in the RAF and has been well since his transplant in 2015.

He completed Best Foot Forward walking around the Norfolk coast with his wife, Anne, and raised over £1,000.

Jim and wife Anne

Natasha de Almeida Natasha fundraised in memory of her uncle, who donated one of his kidneys to his brother, Natasha’s father.

Natasha raised over £700.

Ellie Reynolds In 2018, Ellie’s grandmother received a kidney from Ellie’s auntie.

Ellie raised over £500 by completing Best Foot Forward and by having a bake sale at her school.

Jessica and Oliver Rix Jessica and Oliver’s dad was diagnosed with kidney failure in 2015 and in 2016 he received a transplant.

A huge thank you to Jessica and Oliver for raising over £400!

thank you

We want to say a huge to all our fundraisers; far too many to name but you're all stars in our eyes! HELPLINE 0800 169 0936 | www.kidney.org.uk | Autumn 2021 | 21


News &Time Puzzle Events

PUZZLES

Here’s something to help keep you busy and your mind active… Enjoy!

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LEAVES PUMPKIN ACORNS HARVEST ORANGE BARLEY SWEATER HALLOWEEN APPLES CHESTNUTS SCARECROW SQUIRREL HAYSTACK

Which of the listed words is missing from the word search?

SPOT THE DIFFERENCE CAN YOU FIND THE 10 DIFFERENCES BETWEEN THESE AUTUMNAL SCENES?

22 | Autumn 2021 | www.kidney.org.uk | HELPLINE 0800 169 0936


WE NEED

YOUR SUPPORT The National Kidney Federation (NKF) relies entirely on your support and donations to continue its vital work supporting kidney patients and their families. A regular donation from you will help support every kidney patient in the UK £20 Helps us with printing and postage costs to distribute our free of charge Helpline leaflets £10 Helps towards our campaigning to increase patients on home dialysis £5 Helps us make Government changes in Parliament £2 Covers the cost of your Kidney Life magazine

WAYS TO DONATE: Donate by phone

Donate online

You can call us on 0800 169 0936 for a chat and to make a donation.

Or visit www.kidney.org.uk/donate

Donate by post

I would like to donate a one off

regular monthly

payment of: £5

£7.50

£10

Other

Preferred collection day: My name: Address:

I enclose a cheque*:

*Please make cheques payable to: National Kidney Federation

If you are a UK taxpayer your donation will be worth 25% more at no extra cost to you. Yes – I am a UK taxpayer and would like to Gift Aid my donations now and in future. I understand I must pay enough income tax and/or capital gains tax each tax year to cover the amount of Gift Aid that all charities and community amateur sports clubs claim on my donations in that tax year, and I am responsible for paying any difference. I will inform you if my tax status, name or address change or if I wish to cancel my Gift Aid declaration.

Instructions

Name and full postal address of your bank:

Name of Account holder: Bank Sort Code:

My Account No:

Signature:

Date:

Charity Nos. 1106735 SC049431 Company No. 5272349 Registered in England & Wales

Postcode:

Office Ref No.


THIS OCTOBER WE ARE...

GIVING UP TO

RAISE MONEY FOR KIDNEY PATIENTS

Some kidney patients aren’t able to eat chocolate!

Think of the health benefits! Could you give it up for just one month?

PLEASE JOIN US www.kidney.org.uk Registered Charity Nos. 1106735 SC049431

To receive a

CHOCTOBER FUNDRAISING PACK

please email

nkf@kidney.org.uk

or call

01909 544999 #CHOCTOBER Company No. 5272349 Registered in England & Wales

Profile for National Kidney Federation

Kidney Life Autumn 2021  

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