In Touch newsletter March 2024

In Touch

Information from the National Kidney Federation. Supporting kidney patients, their friends & family.

Welcome to the October 2022

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In Touch newsletter. If you are receiving this newsletter from someone else and not the NKF, you can contact us and request to be added to our mailing list.

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Today is World Kidney Day!

Up to 7.2 million people in the UK are currently living with kidney disease yet there isn’t enough awareness about the condition.

Regrettably, many individuals only appreciate the significance of their kidneys when they fail to function properly.

Sharing your story can significantly contribute to raising awareness that #KidneysMatter.

Help us to raise awareness and get involved

Engaging in discussions with your friends, family, colleagues, social media followers, and local media outlets about your experiences with kidney disease will help to spread the word.

The Kidney Charities Together Group, each year rally together to campaign and raise awareness, the group includes the National Kidney Federation, Kidney Research UK, the UK Kidney Association, Kidney Care UK, PKD Charity, Kidney Wales and Popham Kidney Support. Together we have been sharing numerous social media posts on the lead-up to World Kidney Day and over the coming days we will also be sharing lots of important kidney facts and stats - so stay tuned!

Shining a light on kidney disease

This evening at 7 pm, please join us in lighting a candle or shine a torch to shine for yourself, your donor, and your loved ones in honour of all those touched by kidney disease and share your photos with us.

We would love to see our social media channels filled with your photos or videos!

Please follow our National Kidney Federation social media channels on...

Facebook: NKF - National Kidney Federation and World Kidney Day UK

Instagram: @nkf.uk and @worldkidneydayuk

X: @NKF_UK and @kidneydayUK

LinkedIn: National Kidney Federation

And visit the World Kidney Day website: www.worldkidneyday.co.uk

Remember to post your photo on your preferred social platform along with the following hashtags: #WorldKidneyDay #KidneysMatter

Sheffield Area Kidney Association (SAKA) Join Forces with the Renal Research Team at Sheffield Teaching Hospitals Tonight with a Live World Kidney Day Webinar from 6pm - 7pm - FREE to Register!

6:20PMInformation from Renal DieticianAmy Nuttall-Allsop

6:30PMHome Haemodialysis & Transplant

6:40PM

6:50PMQ&A

7:00PM

Sheffield Area Kidney Association (SAKA) will be marking World Kidney Day this evening with a get together online with a series of short presentations covering different aspects of kidney disease.

All are welcome to join the event.

To join please visit the below link where there is a link to join the Microsoft Teams meeting: https://www.saka.org.uk/wkd/

Expressing Gratitude this World Kidney Day

George, a dialysis patient at the Peter Moorhead Unit in Sheffield recently shared with us his touching letter that he wrote to his dialysis team.

George kindly sent the letter to the National Kidney Federation to share within the In Touch e-newsletter. We hope you enjoy reading it as much as we did and are sure that many of you that are on dialysis or who have been on dialysis can resonate with this touching message.

In Loving Memory of Tess (Teresa Harris)

February 1956 - March 2024

Our hearts at the National Kidney Federation are heavy as we send our deepest condolences to Tess Harris’s family, friends, everyone at the PKD Charity and all who had the privilege of knowing her.

Tess, as a passionate advocate for PKD, was a true powerhouse in raising awareness and supporting those affected by polycystic kidney disease. Her dedication and tireless efforts have left an indelible mark on all of us.

Rest in peace, Tess, your legacy will continue to inspire us all.

To read PKD Charity's full statement please visit: https://pkdcharity.org.uk/news-events/blogs/230-announcing-the-passing-of-tess-harris-atribute-to-her-enduring-legacy-in-the-fight-against-pkd

Will You Be Joining Us This Weekend for the Brave Bean Awards?

Do you have a child living with a kidney condition?

Would you like to put your child forward for a Brave Beans Award?

If you have answered yes to these questions then this could be the event for you and your family!

K.D.A.R.S for Kids are hosting an event supported by the National Kidney Federation, at the Radisson Blu Hotel, East Midlands Airport this Saturday 16th March, 11am-4pm.

It is an opportunity for you and your children to meet other families that are affected by kidney disease.

To reserve your FREE place, please scan the QR code to the right or visit the National Kidney Federation to register your place: www.kidney.org.uk/Event/brave-beansawards

NEW to the NKF Helpline Information Library: Renal

Patients and Alcohol

We have collated a few tips about how to manage alcohol and social situations including advice on: Alcohol limitations, fluid restrictions, general advice with alcohol, other ways to help reduce or dilute alcohol intake, and much more.

With thanks to Dr Julie Highfield, Clinical Psychologist, Beverley Beynon-Cobb, Senior Dietitian, Dr Louise Evans, Clinical Psychologist and Jane Dursley, Renal Dietitian for their help with writing and reviewing this leaflet.

To order your free copy of the information leaflet, please call our Freephone Helpline on 0800 169 09 36 or alternatively email helpline@kidney.org.uk.

KPA Day on Saturday 13th April 2024

Our annual KPA Day is being held this year at the Arden Hotel, Birmingham on Saturday 13th April 2024, 10am - 4pm.

For Kidney Patient Association’s to attend, it is a great networking event to meet and share successes with other like minded KPAs.

The day will involve:

- The launch of our 2024 Increasing Home Dialysis Report

- Break-out group discussions

- KPAs sharing best practice

- Feedback from each group discussion

- NKF's Annual General Meeting

- An NKF Council Meeting.

If you are a KPA committee member and would like to register to attend, please email donna@kidney.org.uk or call us on 01909 544999.

If you are a patient member of a KPA, please encourage your committee to attend so that feedback can be given at your next KPA meeting.

A Celebration of a Gift of Life

Jain and Hindu Organ Donation Alliance (JHOD) is a charity, registered in England and Wales and works to promote awareness of blood, organ and stem cell donation in the Jain and Hindu communities.

JHOD work as an active partner with NHS Blood & Transplant, the NBTA and community organisations around the UK including the National Kidney Federation.

A Celebration of a Gift of Life

In January 2024, an event was held in Leicester, hosted by JHOD Patron, Professor Sir Nilesh Samani and in the presence of Henrietta Chubb JP, High Sheriff of Leicestershire.

Speakers at the event included Professor Sir Nilesh Samani, Kirit Modi MBE, Chair of JHOD, Henrietta Chub, High Sheriff of Leicestershire and Becky Clarke, Regional Head of Nursing, Midlands & South Central at NHS Blood and Transplant.

An award ceremony took place recognising community supporters, living donors and donor families and medics involved in blood/stem cell or organ donation:

These include:- Dr Paras Patel, an Anaesthetic and Intensive Care doctor, Prafulla Modi, a Social Worker with over 40 years of experience, Dr Bhavna Pandya: a Consultant Nephrologist and Physician, Usha Rajni Mehta the President of Jain Samaj Europe, Dr Sashi Ramesh Mehta, Consultant Community Paediatrician, Sunil Daga, a Consultant Kidney Transplant Specialist and Satya Sharma, retired general medical practitioner.

The awards for the donors and donor families went to the following: Manoj Keshavji: donated his wife Leela’s organs, saving 5 lives.

Harish Joshi: received kidney from a deceased donor on in July 2022.

Jitu Mehta, a kidney recipient who was in the waiting list for several years before receiving a transplant.

Kantaben Mehta: Jitubhai’s mother and she too is a recipient of a kidney from a deceased donor.

Mona Parikh: donated a kidney to her brother 13 years ago.

Paras Joshee: who is awaiting a kidney transplant after the one his sister Mona gave him failed after 13 years.

NKF Helpline - 0800 169 09 36

How Long Does a Transplant Operation Take?

Key Points

• It may take several hours after being called up before going to the operating theatre

• Several tubes for monitoring are inserted into the body during surgery

• It is important to get adequate pain relief after a transplant

• Not all transplants work straight away, dialysis may be needed for a while

Tests before the operation

Someone who is called into the hospital for a transplant is not guaranteed to receive it. Before the operation can go ahead, it is necessary to check that you are well enough to have the operation and will not reject the transplant kidney.

1. Physical examination - A thorough physical examination by a doctor is carried out. The purpose of this is to check that it is safe to proceed with the operation. For example, if the patient has a heavy cold, it may be considered too much of a risk to have an anaesthetic. If the patient fails this assessment they will be sent home and put back on the waiting list.

2. The cross-match - This test is the final hurdle before the operation. The cross-match is a blood test that checks there are no antibodies (substances that normally help the body to fight infection) that would react with the donor kidney. Very high levels of such antibodies in the blood mean that the new kidney could be rejected as soon as it is put in, even if it seems a good match.

A cross-match is done by mixing a sample of the recipient’s blood with cells from the donor’s lymph nodes or spleen or blood. If there is no reaction (i.e., the recipient’s blood does not start attacking the donor’s cells), it is assumed that the new kidney will not be destroyed immediately after it is transplanted. This is called a negative cross-match, and means that the operation can go ahead. There can still be some rejection a few days later which is caused by white blood cells but not the antibodies tested for in the cross-match.

If the cross-match is positive (ie there is a reaction between the recipient’s blood and the donor ’s cells), the recipient will usually be sent home and put back on the waiting list. This can be very disappointing, but it is much better to return to dialysis for a while than to be given a kidney that does not work and which may make the recipient extremely ill. If the crossmatch test is only slightly positive, it may be possible to go ahead with a slightly increased risk of rejection.

Virtual cross-match: Most centres offer transplants based on a virtual cross match. This is based on antibodies a cross match could be predicted and if it is negative the surgeon will proceed with the transplant saving critical cold time (kidney kept in ice before the operation).

The transplant operation

An operation to transplant a kidney requires a general anaesthetic and lasts about two to three hours. The surgeon makes a diagonal cut into the abdomen, on the right or the left, below the navel.

The recipient’s own kidneys are usually left in place. The transplant kidney is placed lower down in the abdomen, just above the groin. The transplant kidney has its own artery (to take blood to it), vein (to take blood from it) and ureter (to drain the urine to the bladder).

The artery belonging to the new kidney is attached to the main artery supplying blood to the leg on that side of the body. The vein belonging to the new kidney is attached to the main vein carrying blood from that leg. These leg blood vessels are big enough to be able to send blood to and from the new kidney without affecting the blood supply to the leg. The transplant kidney’s ureter is attached to the recipient’s own bladder.

A small plastic pipe (called a double J stent) is usually inserted into the ureter to help prevent the ureter from becoming blocked/or urine leak after the operation. At the end of the operation, the abdomen is closed with stitches (usually dissolvable). When the patient wakes up from the anaesthetic, they will have several tubes coming out of them.

These will include:

• a urinary catheter (a tube into the bladder)

• a central venous pressure (CVP) line (not commonly inserted).This is a tube which goes into a large vein under the collarbone or in the side of the neck, and measures the pressure of blood inside the heart

• an intravenous drip in the arm (to give the patient fluid and drugs if necessary); and, probably

• one or more surgical drains coming out of the abdomen (to drain off any fluid that gathers around the kidney after the operation)

These tubes will be removed one by one over the next few days. The urinary catheter is usually left in place for three to five days.

Pain Relief

Pain relief is very important, and the patient should know how this is being given. Patient Controlled Analgesia (PCA) is a method where patients initiate the delivery of a small dose of intravenous analgesia. Tablets can be given after a couple of days.

After the operation

The first few days after the operation are critical and everyone is monitored very closely. Particular attention is paid to blood pressure, fluid intake and urine output. Most patients are able to drink and eat small amounts on the day after the operation. Patients usually sit out the following day.

The blood tests to check the level of creatinine is measured every day. The level of blood creatinine shows whether or not the transplant kidney is working. The amount of urine that the new kidney makes is not a reliable indicator, as people who have just had a transplant may produce a large volume of urine that does not contain much waste from the body.

In about one third of kidney transplants, the kidney does not produce any urine in the first few days (and sometimes weeks) after the transplant. This does not mean that the transplant will never work. If the transplant does not work at the start, dialysis will be required until the kidney starts working. A ‘good transplant’ is one that is working well after one year, not two weeks. CAPD may not be always possible, immediately after a transplant as the lining of the tummy is close to the site of the transplant and could be cut slightly. Therefore, for such patients, a line may have to be put in a vein in the neck for haemodialysis.

The stay in hospital is usually around 5-7 days. Sometimes longer if there are complications. After leaving hospital, clinic visits are very frequent - initially two or three times per week, then once a week, then once every two weeks, etc, this can continue for months. When the doctors are satisfied that the kidney is working well, then appointments may be reduced to once every three months or so.

Information by Dr. Oluwafemi Efuntoye, Transplant Fellow, University Hospitals Coventry and Warwickshire NHS Trust, Coventry & Prof. Nithya Krishnan, Consultant Transplant Nephrologist, University Hospitals Coventry and Warwickshire NHS Trust and Professor, Centre of Health & Community Care, Coventry University.

The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.

NKF’s Helpline Information Leaflets

The NKF Helpline information leaflets cover a wide range of topics such as chronic kidney disease, end-stage renal failure, emotional impact of CKD and much more. The leaflets are free of charge and can be mailed out free of charge upon request.

KIDNEY BASIC TITLES

About the kidneys

Chronic kidney disease

How to cope with end stage renal failure I’ve got kidney disease

The emotional impact of CKD

End of life care for renal patients

Conservative management for kidney disease

Carer’s information helping your loved one manage their renal condition (NEW 2024) Cholesterol and kidney disease

Calculating kidney function

High blood pressure

Frequently asked questions about kidney disease

Acute kidney injury

Preventing AKI’s

Acidosis in patients with CKD

Kidney biopsy

Confronting depression while managing kidney disease

KIDNEY DISEASES AND CONDITIONS

Anaemia

Iron deficiency anaemia and CKD

Glomerulonephritis Q and A

Haematuria

Kidney cysts

Pain in kidney and urine disease

12 steps towards pain control

Proteinuria

Small or single kidney

Diabetes and kidney disease

Focal and Segmental Glomerulonephritis (FSG)

IGA Nephropathy

IGM Nephropathy

What is vasculitis

Henoch-Schonlein Purpura ARPKD

Adult polycystic kidney disease

Renal artery stenosis

Amyloid

Kidney disease in myeloma

MPGN Membrano Proliferative

Glomerulonephritis

Minimal change nephropathy

Nephrotic syndrome in adults

Loin pain haematuria

Interstitial nephritis

Urinary infections

Reflux

Alport’s syndrome

Lupus and lupus kidney disease

Fabry disease

Bones, calcium, phosphates & PTH kidney failure

Good mouth care for renal patients

Calciphylaxis

HAEMODIALYSIS

Introduction to haemodialysis

Home dialysis the advantages

Myth busting home dialysis

Having a fistula for dialysis

Living with a fistula for dialysis

Fistula care

Dialysis line insertion

My first haemodialysis

Fluid balance on dialysis

EndoAVF system more access options for your dialysis

NKF Peer Support Booklet

Peritoneal dialysis

Introduction to peritoneal dialysis

DRUGS

Medication for immunosuppresion and prevention of infections in kidney patients

Commonly taken drugs for kidney failure

Over the counter drugs

Blood pressure medication

Holiday travel vaccinations in transplant patients

TRANSPLANTATION SERIES

Top tips information about transplants

What is a kidney transplant

How long does the kidney transplant operation take

How are kidneys allocated

The transplant phone call - what to expect

The transplant procedure - what to expect

How long is the wait for a kidney transplant

Is a kidney transplant psychologically stressful Complications of a transplant

Can a transplant come from a relative, partner or friend

Are work and normal life possible after transplant

What drugs are needed after transplant

Infection after transplant

Diabetes after transplant

Blood pressure, cholesterol, heart disease after transplant

What is transplant rejection

After my transplant - what to expect

Skin care in renal transplant patients

Sexual problems following a transplant

Cancer after a transplant

LIVING DONOR INFORMATION

Living donor information

How do kidney donors feel afterwards

Reimbursement of living donor expenses by the NHS

Going home after donating a kidney

KIDNEY DISEASE AND FOOTCARE

Charcot feet

Holiday feet

Foot ulcers

Footwear

HOLIDAY INFORMATION FOR KIDNEY PATIENTS

Holiday tips and guidelines

Holiday guidelines for pd patients

Holiday guidelines for hd patients

Holiday guidelines for transplant patients

DIETARY INFORMATION

Potassium

The eatwell plate

Can kidney patients eat fruit and vegetables

Dietary information for kidney patients (CKD 4-5)

Healthy eating for people with chronic kidney disease (CKD 1-3)

Phosphate in your diet

INFORMATION FOLDERS/BOOKLETS

Benefit guide for kidney patients 2024

Dietary information folder

CKD stage 3 information folder

Dialysis information folder

Exercise information folder

Post transplant information folder

Pre transplant information folder

NKF new patients support book

EXERCISE INFORMATION

Exercise for kidney patients

Exercise for kidney patients (NEW Nov 2023) NKF and Leicester kidney lifestyle team

Staying fit with kidney disease

Let’s get active - exercise for kidney patients

Can I safely exercise with high blood pressure

For more information on our NKF Helpline information leaflets, please visit our website: www.kidney.org.uk/helpline-leaflets

Our free to call confidential Helpline is available on: 0800 169 09 36

Available from: Mon-Thurs 08:30am - 5:00pm, Fri: 08:30am - 12:30pm

Or alternatively email: helpline@kidney.org.uk

Cardiovascular disease (CVD), is a general term for conditions affecting the heart or blood vessels and causes 1 in 4 deaths in England. High blood pressure is the largest single risk factor for CVD and can increase your risk of serious and potentially life-threatening health conditions, such as heart attacks, stroke, kidney disease and vascular dementia. However, as high blood pressure usually has no symptoms, it is estimated that 4.2 million people in England have high blood pressure without knowing it.

New data has revealed that worryingly high numbers, people don’t know the potentially fatal effects of high blood pressure – with four in 10 (41 per cent) unaware that, if left untreated, high blood pressure can lead to heart disease, and over a fifth (22 per cent) being unaware that it can cause strokes and heart attacks.

The only way to know if you have high blood pressure is to get a blood pressure test, which is a free, simple, non-invasive procedure.

If you're aged 40 and over, you can get a free blood pressure check at your local participating pharmacy, without needing to book in advance.

Find a pharmacy that offers free blood pressure checks near you by searching “pharmacy blood pressure check” online or visit the NHS website directly here: www.nhs.uk/nhs-services/pharmacies/find-a-pharmacy-that-offers-free-blood-pressurechecks/

NKF Fundraising

NKF Transplant Wristbands - Now Back in Stock!

The NKF wristbands are very popular, we have just received a new stock of them, they are £1 each and are great for alerting a medic that you are a patient in an emergency.

Order yours today: www.kidney.org.uk/shop/nkf-wristband-transplant-patient

Free Wills Month

The National Kidney Federation (NKF) is the only kidney charity in the UK run by kidney patients?

We're also proud to operate the only free-to-call UK Helpline dedicated to kidney patients, along with being the largest provider of kidney-related medical information leaflets, boasting a library of over 200 titles written by nephrologists in simple language for patients and carers. Despite these vital services, we operate with only 8 full-time staff members and rely heavily on the generosity of our supporters through sponsorship, donations, and legacies.

This March, as part of Free Wills Month, we've partnered with FreeWills.co.uk to offer all our supporters the opportunity to create their own fully comprehensive will for free. Crafting your personalised will online is simple and can be done in three easy steps, with live support from their will specialists.

Learn more at: https://freewills.co.uk/charity/nkf

Writing your will is a deeply personal decision, and family will always come first. But a gift in your will could support kidney patients and their families for many years to come. That would be an incredible legacy.

Patient Participation Opportunities

Have You Had A Kidney Transplant in The Last Two Years?

Would you like to help us better understand how patients feel about their transplant health care?

NHS Blood and Transplant are looking for people to take part in an interview study.

If you would like to be involved, you can find out more below:

Website: https://www.odt.nhs.uk/information-for-patients/

Email: TransplantPREM@nhsbt.nhs.uk

Or alternatively call: 07379 076 571

HOLIDAY DIALYSIS CARE IN THE LAKES!

Look forward to a great holiday in the stunning Lake District whilst letting Lakeland Dialysis cater for all your haemodialysis needs in a relaxed and professional atmosphere.

WHERE ARE WE?

Situated on the Northwest edge of the Lake District National Park, adjacent to the Cumbrian market town of Cockermouth we have been specialists in holiday dialysis since 2004. Things to do include taking in the majestic fell views, visiting the steam railway, cruising on a lake or just relaxing and enjoying the rich and local hospitality on offer.

QUALITY CARE

Regulated by the CQC we pride ourselves in offering: personal and professional care, individual appointment times, disabled parking facilities and ground floor access.

TREATMENT COSTS ARE COVERED BY THE NHS

BOOKING WITH US

For more information, please speak with your Renal Team, contact us on 01900 822 888, e-mail info@lakelanddialysis.co.uk or visit our website www.lakelanddialysis.co.uk where you can make a booking enquiry, as well as access lists of locally available accommodation recommended by previous visitors to the clinic.

LakelandDialysisinCockermouth

Lakeland Dialysis Ltd, Unit 7E, Lakeland Business Park, Lamplugh Road, Cockermouth, Cumbria, CA13 0QT

www.lakelanddialysis.co.uk

Combine top quality dialysis treatment with amazing holidays, on the island of Rhodes

Hemodialysis (HD) & Hemodiafiltration (HDF)

24-hour medical support

State-of-the-art technical equipment

Separate room for patients with Hepatitis and HIV

We accept the European Health Insurance Card (EHIC) & UK Global Health Insurance Card (GHIC)

CONTACT US:

info@euromedica-rhodes.gr / int@euromedica-rhodes.gr / T. +30 22410 45000 - 22410 45280 - 22410 45222

euromedica-rhodes.gr / dialysis-rhodes.com

NKF KPA Members

Currently there are 48 Kidney Patient Associations (KPAs) and their officers are the controlling council of the NKF. Please find the details below of the KPA's available or for more information please contact the NKF office via 01909 544 999 or email nkf@kidney.org.uk

Addenbrooke's KPA

Bristol Area KPA

Chesterfield KPA

Colchester KPA

Coventry & Warwickshire KPA

Doncaster and Bassetlaw Kidney Association

Dorset KPA

Dudley KPA

Exeter & District KPA

Friends of Derriford Hospital Kidney Unit

Gloucestershire Kidney Patients' Association

Guy’s & St.Thomas’ KPA

Heart of England KPA

Hope KPA

Humberside KPA

Ipswich & District Kidney Association

Isle of Wight KPA

Kent KPA

King’s KPA

Kernow KPA

Leicestershire KPA

Lister Area KPA

Liverpool KPA

Manchester Royal Infirmary KPA

Manx KPA

North East Kidney Patients' Association (NEKPA)

Northamptonshire KPA

North Staffs & South Cheshire KPA

Nottingham and Notts KPA

Orkney KPA

Queen Elizabeth Hospital KPA

Royal Derby KPA

Royal Free Hospital KPA

Royal London Hospital KPA

Sheffield Area Kidney Association (SAKA)

Scottish Kidney Federation

Shropshire KPA

Six Counties KPA

South Eastern KPA

South East Scotland KPA

Southport Kidney Fund

St Helier and Surrey KPA

Tyneside KPA

United Norwich KPA

Wessex KPA

West London KPA

West Riding KPA

Ysbyty Gwynedd KPA

Associate Members

British Association of Social Workers (BASW)

K.D.A.R.S

Kidney Cancer UK

If you are a Kidney Patient Association that would like to become an NKF member please call 01909 544999