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



       A        and living very happily and healthily is because of home dialysis.
              s I write this I am sitting in the desert outside Dubai, about to start a busy day of fun, jumping out of
               aeroplanes and horse riding in the sand dunes. The only reason I am here now, pursuing life with a passion


                 20 years ago my life was turned upside down by an aggressive onset of FSGS. I spent 18 months in
       Guy’s Hospital undergoing treatment including steroids and chemotherapy plus an array of horrible complications.
       At 14 years old I had my kidneys removed and immediately opted to dialyse myself at home on overnight APD. The
       transition from being incredibly unwell with an unpredictable condition, to managing my own treatment at home and
       regaining my energy, well-being and control over my life was transformational. I went back to school full time and to
       the sports and hobbies that I loved. I revelled in my newly rediscovered health and freedom – as such I considered my
       introduction to dialysis to be incredibly positive in contrast to what had gone before.
       Within 2 months of starting PD I took my machine to Spain on my own as I wanted to prove that dialysis wouldn’t
       hold me back. I had so many adventures on PD, taking my machine up mountains skiing and all over Europe
       dialysing in multiple different locations. I had an amusing experience being held up by armed police late at night at
       the Czech Republic border with a van full of apparently suspicious    looking PD fluid. I waited to finish
       school before going for a transplant because I was determined          to get the grades I needed to study
       Natural Sciences at Cambridge University.
       In 2003 when I was 19 my amazing dad donated his kidney to
       me, but sadly the FSGS recurred within 12 hours so I went
       to Cambridge as a haemodialysis (HD) patient. Back then
       home HD wasn’t available in the area so I did three nights
       a week at the hospital, crammed in around studying and
       a busy student social life. Ultimately I wasn’t prepared to
       sacrifice three years of optimal health in order to stay at
       Cambridge, so I left university and moved back to
       London so I could switch to nocturnal home HD,
       6-7 hours every night.

       I cannot begin to describe how
       good nocturnal HD is – I
       have no restrictions
       and loads of energy
       and I am convinced
       I couldn’t feel any
       better even with
       working kidneys.
       It has enabled me
       to be continually
       employed since
       leaving
       education,
       and for
       the past 7
       years I pursued
       a very work-hard, play-hard career
       in investment banking. For a memorable
       few months in 2015 I was juggling working as
       an executive director in the day, playing a zombie in a
       theatre show in the evenings (since I’m very good with blood!) and skydiving all weekend.

       Last year I set up my own business as an HR consultant and kidney patient advocate. Working for myself has
       given me the flexibility to focus more on supporting other kidney patients, championing the cause for patient
       empowerment and self-care. I find it difficult to believe how relatively few patients do nocturnal home HD in the

           8  Summer  2017   www.kidney.org.uk   HELPLINE  0845 601 02 09
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