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Having Chronic Kidney Disease (CKD) should not stop you leading a full and active life.
However you may need to make some changes because of your treatment. Support from other people may help. These may include health and social care professionals, family, friends and other people with CKD.
Getting the most out of your life
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I was otherwise fit and well, but a problem with my kidneys was identified when I was 20 while at university. There were tell-tale signs of swollen ankles and feet but it took four visits to a GP over 12 months to be given a urine test and after a biopsy Focal Segmental Glomerulosclerosis (FSGS) was diagnosed. I completed my degree while receiving initial drug therapy (steroids and immunosuppressants).
The drugs did not work and there was a steady decline in my kidney function for four years in which time I endured tiredness due to anaemia, gout pains, swollen ankles, itchy skin, and loss of appetite. However I carried on keeping up with my peers, working full-time and studying part-time, going on holiday, keeping as active as possible (physically and socially) and pretending I would never need dialysis or a transplant!
I endured a strict diet before dialysis of low protein, high calorie (and of course low salt) which is somewhat different from advice nowadays which generally advises a healthy diet (low fat, sugar and salt). As dialysis got nearer low potassium and low phosphate diets kicked-in, meaning boiled vegetables, less fruit, minimal chocolate and crisps, minimal cheese and oily fish in particular.
I was presented with the option of peritoneal dialysis (PD) or haemodialysis (HD). As a vain man I opted for HD not wanting a catheter inserted into my belly and instead opting for a fistula! I might have chosen differently with more knowledge – 15 years on patients get far more information!
I fitted HD around work, I found the diet and fluid restriction hard, I was often frustrated by the inflexibility of HD and it impacted on holidays – however I went to Majorca and Marbella on holiday and exercise-wise I went from minimal exercise to 10k then half marathon!
Initially my mother was to be a donor, but there were problems and I was placed on the list – I waited for nearly six years for a deceased donor transplant, called out of the blue one Friday morning. It was a long wait with highs and lows; exercise played a valuable part in my well-being as well educating myself more in my own health - both enabled me to take control over an illness which had stolen my confidence.
After my first transplant I awoke in an almost euphoric state partly because of the pain relief and also with joy that the wait was over! After the safety net of the first year I travelled, got my fitness back on track, enjoyed my food even more and put my personal life in order too! I had regular check-ups and Renal Patient View (RPV) will enable you to keep check of your blood results online.
Now 37 and living with my second transplant, this time from my wife, I am fit and well, working full time for the National Kidney Federation (NKF) and a committee member of the Guy’s and St Thomas’ Kidney Patients’ Association (GSTTKPA). Testimony to the magnificent health care team at Guys and the love and bravery of my wife, I am running the London Marathon in 2014!
My message would be to keep family and friends close to you on your journey, remember things don’t always go to plan, follow the diet/fluid restriction, keep as active as you can, ask questions, and get information early – knowledge is power and is all empowering.
I was diagnosed with end stage kidney failure.
Now I am fit and well, I work full time for the National Kidney Federation and I am a committee member of the Guy’s and St Thomas’ Kidney Patients’ Association. Here’s my story…