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Kidney Care UK

“Residential weekends are the highlight of the year”

Maddy Warren, 35, from London, explains how Kidney Care UK’s residential breaks make a difference to young adults with kidney disease

My aim has always been to live life to the full and make the most of every opportunity, and one achievement that stands out is running the London Marathon last year to celebrate 20 years on dialysis. I had no idea if I could do it so wanted to
see if I could, which is how I approach many things. It’s an attitude I also hope to inspire in other young kidney patients!

In February 1997, at the age of 13, I felt more tired than normal and my eyes were puffy. I went to the GP, who issued a blood test and then referred me to the paediatric kidney unit at Guy’s Hospital in London. I was given a variety of tests, including a biopsy of my kidneys, and received a diagnosis of FSGS (focal segmental glomerulosclerosis) – an autoimmune condition that attacks the kidneys. 

My version of the condition was very aggressive and my symptoms were progressing rapidly, so I was immediately started on treatment to try to keep me as healthy as possible and limit the damage to my kidneys, as well as suppressing the immune system. During the following 18 months, I was in  out of hospital, having immunosuppressant medication, steroids and chemotherapy. I lost all my hair from the chemo and my kidneys stopped working properly. My body swelled up as I was retaining up to 15 litres of fluid. My bowel also collapsed because of all the fluid in the wrong places, so I had to have emergency surgery.

After 18 months, it became clear that my condition wasn’t going to go into remission and my kidney function was really low. The medical team and I decided to take my kidneys out and start me on dialysis – which uses a machine to replace the kidney functions of cleaning toxins out of the blood and removing excess fluid out of the body. As my condition is an autoimmune one that attacks only the kidneys, removing them alleviated its symptoms.

Then, for the following five years, I did peritoneal dialysis – where a tube is inserted in the abdomen and the peritoneal membraine is used as a filter – for eight hours every night while I slept at home. I was lucky in that I felt extremely well on the dialysis, though that is not the case for everyone.

In 2003, my dad donated a kidney for a transplant. It was very high-risk – because the FSGS was never treated, nobody knew whether it would attack the new kidney – so I had wanted to wait until I finished school to have it. Within 24 hours of having the transplant, my condition came back with a vengeance and wouldn’t respond to treatment. They had to remove the kidney and I realised I would most likely be on dialysis for life, unless a cure is found for my condition.

I then changed over to haemodialysis – which uses an external machine to filter the blood, which passes through a tube attached to two needles in your arm – as peritoneal dialysis isn’t something you can do for ever. I chose to continue doing this at home overnight. It was an adjustment at first, with learning how to put in the needles and work the machine, and I couldn’t sleep to begin with. However, once again, the dialysis worked for me and I was able to lead a relatively normal life – which is quite unusual. I began exercising, joined a skydiving team, and was running my own business.

In 2016, I got involved with Kidney Care UK’s residential weekends for kidney disease patients aged 18-30 in a peer supporter role. The weekends are the highlight of the year for many. They give young people access to a range of activities such as abseiling, kayaking, zip wires and high rope climbing, supported by qualified instructors, medical staff and peer supporters.

Many young kidney patients miss out on education, social relationships and friendships, so it is lovely to see them have fun and relax with people who understand what they are going through and see lasting friendships develop. It is also incredible to see their confidence grow and that sense of achievement as they take on physical challenges that they thought were impossible.

Kidney disease is a lifelong condition that comes with many complications, and having peer support to navigate those challenges is essential. We provide a safe and confidential space for people to discuss things they might not feel comfortable talking about with others – such as relationships or sexual health. I am also passionate about helping people to get back into employment so can give advice on how to prepare for this and manage their condition in the workplace.

We get what young adults with kidney disease are going through because we’ve
been there too, and can tell them, “Yes it’s really hard, but yes you can do it, and here’s how to make it work.” It’s about being realistic but also positive and helping them to live the best life they can, which is what we try to facilitate.

Funding the 2019 young adult residential trip

One in eight people in the UK will develop chronic kidney disease

In 2017, Kidney Care UK invested more than £2.1 million to support kidney patients and their families, and supported more than 100 patients every week

Kidney Care UK (formerly the British Kidney Patient Association) has supported kidney patients and their families for more than 40 years.

TOTAL RAISED: £8,924

➸ The money raised in The Candis Big Give will help to fund the young adult residential trip in 2019. It will go towards planning and promoting the trip, pre-trip support, travel costs, accommodation and catering, and support and care (including medical requirements) for all attendees. It will also help to cover the costs for the activities and workshops, including activities such as kayaking, archery, abseiling and raft building, and informal workshops on topics such as diet and exercise, medication and treatment. Visit kidneycareuk.org to find out more.

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