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By Maddy Warren
 Tales from Dialysis Nights (Six Thousand Five Hundred and Counting)

         UK when it is so transformational. This is why I am a   adventure in itself as I
         patient advocate for Quanta Dialysis Technologies, as   get a kick out of turning
         I wholeheartedly support their mission to put patients   up to a new clinic and
         first with an innovative machine which enables people   navigating an unfamiliar
         to fit their dialysis around life and not the other way   healthcare system
         round. I am very excited to see the SC+ already being   where I don’t speak the
         successfully used for pilot treatments in patient’s homes   local language. I guess
         and look forward to it officially launching soon.     dialysis has removed the
         I have been so lucky to have such an amazing          fear factor for me since
         experience of dialysis and I am incredibly grateful   nothing will ever be more   Maddy Warren
         for the unique perspective, positive energy and deep   challenging than finding out at a very young age that
         appreciation for every single day that it has given me.   I will need a machine to survive for the rest of my life,
         My renal team at Guy’s are also absolute legends and   especially since a transplant is not possible.
         I wouldn’t be here without them. I try to push myself to   As I sit out here in the middle of nowhere, I feel about as
         extreme challenges, hence my love for mountain hiking,   far removed from hospitals and the identity of “dialysis
         riding racehorses and skydiving. I now have my solo and   patient” as I could possibly get. And as I celebrate my
         formation skydive licenses and over 300 jumps in several  18 year dialysis anniversary, I’m looking forward to many
         countries. Travelling on dialysis has become a whole   more years of fun ahead.

                My top tips for dialysis survival:

                Stay positive – keeping a positive and upbeat attitude towards dialysis helps hugely and I believe
                improves your physical health too. Find the silver linings! You are a dialysis super hero saving your own
                life every time you set up that machine.

                Manage your own treatment as far as possible – taking control leads to empowerment, which in turn
                can build confidence and also save time. Take small steps to start with like doing your weight, blood
                pressure and programming the machine and you will quickly feel able to take on more. Don’t let those
                around you tell you what you can and can’t do, be confident about your own abilities.
                Needling – the majority of patients who I speak to are very nervous about putting in their own needles,
                which they feel is a major obstacle to starting home dialysis. Rather than focusing on the act of needling,
                instead visualise the goals you want to achieve when you are able to dialyse independently at home.
                That could be anything from going back to work or studying, to being able to spend more time with
                family or take up new hobbies. Focus on the outcomes you want to get to rather than the process of
                getting there.

                Get fit and stay fit – after every surgery or major ill health episode I made a massive effort to rebuild my
                physical fitness as quickly as I could even when it felt impossible, because it has a huge impact on my
                energy levels and ability to juggle dialysis, work and life, even on the off days.

                Live for the moment - it is tempting to put your whole life on pause until the call comes with a kidney. I
                hear many people talking about “the wait” and the things they would like to do if they weren’t on dialysis.
                But the reality is nobody knows how long that wait might be or even if a transplant will be successful
                (and for some like me, a transplant is not a possibility anyway). By living in limbo you are losing
                the precious time you have right now which you will never get back. Be creative and flexible
                about finding ways to live your life despite dialysis, and make the most of every moment.

            Twitter: @queenofdialysis    Online: Search Queen of Dialysis TED talk
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