Page 23 - NKF-KL-issue-14-Autumn-2016-for-web

Live long and prosper…

So says Kidney Life reader Paul Conelly who wrote to us suggesting that it would be a good idea to start a
discussion page in Kidney Life on which readers could exchange tips on how they manage their life on dialysis.
So here follow some of Paul’s tips. Do you have any to add? If so we here in the Kidney Life office would love
to hear from you and we will share them with all our 28000 readers. Who knows – it might be your tip that
really helps someone tackle a problem that has been plaguing them for ages! Contact us through NKF Head
Office email or by letter.
“ e all want to live long and prosper. But can you do it with a
W dialysis dependent life? I say we can!

After two very short-lasting transplants I was faced with the reality
of being on dialysis for the rest of my life. News that was very hard
to take at the time. But we all live in hope that research will be able
to find a solution to this problem. So, it’s down to me to keep my health and body
in some sort of shape ready for a transplant - if the research allows this in time.
I would like to pass on to you some hints and tips on how I have coped over the
past seventeen years. I do understand that we are all different and what works for
me may not work for you, but there may be little things here that help you.
Good health and wellbeing for me are down to the way we think about our
problem. I try to embrace it and respect it. But I am in charge of it so it does not
own me; I own it.
I would encourage everyone to listen and act upon what our great doctors, nurses
and dieticians say to us. They have trained for many years in our problem and Paul Conelly, Hon Vice Chair, St Helier
want to help.” and Surrey KPA

Fluid Restriction
This can be the hardest thing for all of us. Personally I have become very fussy over tea - it must be hot, as cold tea is a
waste of my allowance. Small cups at home and my own baby cups when visiting family and friends (I’m very proud of
my Thomas the Tank Engine cup). On a hot summer’s day I only drink hot tea as a cold drink leaves me wanting more. If
you see me in the pub and offer to buy - mine’s a double gin and tonic. I save up my allowance and seldom have more
than two or three.

Drugs
My first Consultant, Dr Bending (now retired) said to me “Never say to me I have taken the little pink one…. know your
drugs.” This is so true. Know what you take, how much you take and why you take your individual drugs. It is then
possible to have a meaningful discussion about drugs with your Consultant.
Health and Wellbeing
This may be a little controversial for some, but it really works for me. As you will know, after seventeen years on the
machine the old joints are not what they used to be so swimming is great on non-dialysis days. I then take a sauna – but
before anyone follows this plan you MUST MUST speak with your Consultant to make sure you are fit to do so.
Facing Problems
Through the years we are bound to have problems with our health. Personally I try to see it as part of the main problem
of no kidney function, so if it’s heart or stroke or three parathyroid operations it’s all one problem with hiccups along the
way. Never say ‘why me?’ The scars are medals to be worn with pride and a good working fistula is the biggest badge
of honour a HD patient can have.

Taking Control
I think being able to own and take control is the biggest help to me in my mind. When I was offered home HD (having
to needle myself) I did not entertain it at all at first. Then, talking to a patient at home changed my mind. One day, after
weeks of actually watching my needles going in, I asked the Nurse to let me do it myself. I did it and then cried, as I
knew my life would now change for the better. With great training and help I am at home as independent as anyone
can be on dialysis for the last six years. I run dialysis, it does not run me. Sometimes I feel when we attend hospital or
satellites we hand over our illness and that suits some people, but not me anymore. I would urge you to have a chat with
your Consultant to find out if home home haemodialysis is possible for you too.
HELPLINE 0845 601 02 09 www.kidney.org.uk Autumn 2016 23