Kidney transplantation is an important treatment for children and adults with kidney failure. Although most patients need to take immunosuppressive drugs for life to prevent transplant rejection, some patients may become “tolerant” to their transplants. This is a state where, even without immunosuppressive drugs, the immune system does not recognise the transplanted kidney as “foreign”. If we can identify patients who are “tolerant”, we may be able to reduce or even completely stop immunosuppressive treatment and this would avoid unnecessary side effects.

We have collected and analysed samples from around 400 patients who have received a kidney transplant. We have identified specific “markers” in a small number of patients who have been able to stop their treatment but still maintain good kidney function. We could potentially use these markers as a screening tool to find other tolerant patients and decide whether these patients might be able to reduce or stop their immunosuppressive treatment.

We are currently developing a clinical trial to properly test these markers in the clinic. This could help some patients to reduce the unwanted side effects of medication including the increased risk of infection and cancer. For more information, please contact Dr Maria Hernandez-Fuentes, maria.hernandez@kcl.ac.uk.

This unique interactive exhibition will showcase how research has been applied for the benefit of patients. It will feature interviews with the pioneers of science and transplantation and a multi-player video game demonstrating cutting edge research. It is free to attend and everyone is welcome: Thursday 20th June 2013, King’s College London, Strand Campus,London WC2R 2LS, 10am – 6pm.

If you have had an organ transplant you can contribute to the exhibition by completing a short on-line questionairre to illustrate your experience as a transplant recipient, to access the questionairre please visit http://transplantation.kcl.ac.uk/event.php

This community-based centre, run by Guy’s and St Thomas’ NHS Foundation Trust, provides a relaxing, pleasant environment for patients with kidney disease to dialyse at a time and place convenient to them.

 David Weir said: “I am delighted to officially open the Borough Kidney Treatment Centre which provides life-saving dialysis. It feels less like a clinic and more like a home from home for kidney patients who need dialysis three times a week.

 “The effort that Guy’s and St Thomas’ is making to empower patients who want to manage their own condition and tailor their treatment to their own convenience is amazing.”

Charge Nurse Erwin Desendario explained: “We’ve made a big effort to fit the service around our patients’ needs so they can request an appointment that suits them. We are open from 7am to 11pm Monday to Saturday so people can fit dialysis around their work and personal commitments, rather than the other way round.

“Our chairs are big and comfy and chosen by the patients, there’s local artwork and TVs, which all helps people relax during the 3-4 hours it takes for their dialysis session.”

 Kidney patients and local residents were involved in the planning and design of the centre which has a self-care area for people who want to do some, or all, of their own care. Staff also offer training and support to patients who wish to learn how to do dialysis at home.

 Up to 300 patients a week receive life-saving kidney dialysis treatment, support and advice at the centre, one of seven satellite dialysis units run by Guy’s and St Thomas’.

The centre cares for patients who need regular dialysis treatment, usually three times a week for up to four hours, or who dialyse at home but have regular check-ups. Patients who are seriously ill and with complex kidney problems are treated in the dialysis unit at Guy’s Hospital.

For two of our runners Hannah & Sarah (above) this was their first time that they had ever ran a marathon!  Hannah said of the day “It was a long, slow and quite a painful day but one that will remain a very fond memory for many years to come. I am overwhelmed by everyone’s generosity, not only in helping us raise over £4000 for the KPA but also for the good wishes and encouragement”. 

 The KPA would like to thank all of our wonderful runners and for everyone who donated money to them, so far our runners have raised over £9000.00 between them.

 If you are interested in running for the KPA in next years London Marathon please contact: Bernadette Lynch on Tele: 0207 188 5667 or email bernadette.lynch@gstt.nhs.uk.

MyKidneyCare smartphone ‘app’ has been produced by the KPA together with clinicians from Guy’s and St Thomas’  kidney service. It was launched last year and was aimed at young adult kidney patients. Version 2 is now available for android, iphones and ipads and is suitable for kidney patients of all ages.

The app has been designed to be both a hand held kidney care record and a self management tool. It provides a place for you to keep your own kidney care records including appointments and medications.

Features of the app include:
• A page for your medicines list, with prompts to remind you to to renew prescriptions
• A page for appointments with reminders 
• A page to make notes of talking points, concerns and questions ready for your next appointment
• Top 10 FAQs and links to further kidney care information

The app is available free of charge for android and iphones (requires iOS 5.0) and ipads. Just download from google play (for android) or itunes (for iphone/ipad).

Fund raising takes place throughout the year to support children and their families to attend The Games. The children can compete in a variety of sports from athletics, swimming, badminton and tennis; the list continues. The aim of the games is to celebrate the success of transplantation. Some children go to The Games to win medals, having trained well in advance, while others go just to take part and enjoy themselves.

It is always a hugely positive experience for everyone involved. Those competitors who do exceptionally well in The British Transplant Games form a team to represent Great Britain and Northern Ireland at the World Games which are held every two years.

The KPA provide financial support to both the children’s and the adult Guy’s and St Thomas’ teams.

A cookbook, which has been created by TV chef Lawrence Keogh and Renal Dietician, Diane Green, is now available free of charge for patients who need to control their diet due to chronic kidney disease.

The book, which has 16 recipes, is called Rediscovering Food & Flavours. It is free to download from www.lawrencekeogh.com , just click on kidney research.

This is what Lawrence Keogh had to say about his book:

“I know the restriction kidney disease puts on your diet, it’s dull and very frustrating. I’ve developed the cookbook to bring an element of fun back into eating recipes that are simple to produce and perfect for all the family.  I’ve worked closely with Diane to make sure the best quality ingredients are used to ensure CKD sufferers are getting the best possible dietary needs they require and have made an effort to move away from bland low phosphate diets. I am delighted to be a part of this project and just hope that people benefit from the cookbook and that it serves to improve their quality of life.”

The transplant team at Guy’s and St Thomas’ performs 25% of all children’s kidney transplants in the UK and many of the families live as far away as Dorset. When the children have had their transplants they need to attend transplant clinic every day and the house is often used by families who would otherwise have to travel into London daily.

Currently the Guy’s and St Thomas’ KPA sponsor two rooms in the house: Frog and Turtle; they are the biggest rooms containing five beds; they are often used by a transplant family and soon become their ‘Home from Home’.

If anyone is interested in fundraising or volunteering for Ronald McDonald House please email: info@ronaldmcdonaldhouse.org.uk or visit the website: www.ronaldmcdonaldhouse.org.uk

Most importantly young kidney patients wanted to strike a balance between managing education, work and a good social life, with the demands of clinic appointments and often complicated medicine regimes.

In response to this the Guy’s and St Thomas’ KPA decided to work alongside young patients and staff of The Evelina, Great Ormond Street Hospital and Guy’s to produce and fund a smartphone app. The aim of the app is to help young kidney patients manage their care more effectively and signpost them to further information.

The MyKidneyCare app acts as:

• A place to store personalised kidney care information including medications and appointments.
• A place to make notes of concerns or questions for the kidney care team or GP
• A signpost to further on-line kidney care information

The app is available for Android smartphones; iPhones and iPads and is free to download.

To celebrate World Kidney Day the KPA set up a stand in the foyer of Guy’s Hospital to raise awareness of kidney disease and encourage people to sign up to the organ donor register.

KPA memebers were joined by representatives of the Trusts’ Organ Donor Committee and NHS Blood and Transplant. The theme of WKD this year was prevention of Acute Kidney Injury (AKI) where the kidneys quickly lose function within a few days. It is common and harmful – it is also avoidable and treatable. It affects about 20% of people who are admitted to hospital as an emergency.

The National Institute for Health and Clinical Excellence (NICE) is publishing new national guidelines aimed at increasing health professionals’ recognition and management of AKI so it is diagnosed sooner and managed better.