Lifestyle
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
Trevor's story
Move your mouse over each box to read Trevor's comments.
Finding out
Felt ill for some while, but diagnosis took place as a result of changing GP. (End stage kidney failure!) Despite being a science graduate, had no clue about kidneys – fast tracked my learning – probably true of most people.
Range of tests / Advice
Underwent a range of tests – decided that the rate of reducing kidney function could be managed through changes to lifestyle – first time in my life that I had permission not to eat my “Greens”. Got good advice – Hospital came to my employer and discussed work options.
Making a fistula / Choice of treatment / Inserting catheter
Kidney function continued to reduce and the time came to consider dialysis. In discussion with doctors decided to have a fistula made (joining an artery to a vein) sounds grim but painless operation. Remember changing dressing not nice and sleeping quite difficult because of the thumping noise as the blood flows through the fistula – you get used to it – great sense of amusement for friends who wish to touch it. Eventually decide to dialysis using APD. Catheter for APD inserted under local anaesthetic – not too good – now done under general anaesthetic – much better idea.
Getting started / Living
Bit daunting to start with – lots of advice about hygiene – felt I was about to kill myself every time I touched something. First machine was a bit useless but the second one was fabulous – soon got used to dialysing overnight – felt well. Lived a near normal life.
Preparing
Offered a place on the Transplant register subject to a number of tests. Took about three months to roll round the various hospital departments having nasty things done. Then you wait and wait. Most difficult thing is managing friends and family – they keep asking when it is going to happen and of course no one knows.
The phone call
Been to see ‘Comedy of Errors’ at the Greenwich Theatre the night before and the next morning, just as the first spoon of cornflakes was about to enter my mouth, the phone rang. There was a kidney – “don’t have any breakfast and come now“ - which I did. To my great relief and lifelong gratitude the surgeon was waiting for me and said that as soon as he could sort out a theatre he would “do it”. So with the minimum of delay or worry I was on my way.
Tubes and things / Going home
I woke up surrounded by tubes and things, which were slowly removed over the coming couple of days. After five days I went home. I felt a bit like the Michelin Man as I was carrying a lot of fluid but that disappeared quickly. My new hobby was coming to the outpatient clinic three times a week (for three months).
A bit of someone else in you / Those pills
It is quite odd having strange tissue inside you but again you get used to it. My first four months were a bit up and down – on "cloud nine" at one moment and not too well at another. The pills were also a bit of a challenge and were someway responsible for the feeling a bit iffy. After about 6-9 months everything settled down and the number of pills started to reduce.
Breezing along
Over four years in (from transplant) and kidney function is fine and life is a breeze. Can do anything I wish and travel extensively. Pop into the hospital every three months for a check, use Patient View to monitor my own bloods.
I was diagnosed with end stage kidney failure.
Now I lead an active life and I’m the current Chair of the Guy’s and St Thomas’ Kidney Patients Association. Here’s my story…