Sue, you've told us that you've been a kidney patient for over 40 years now
which is absolutely amazing. I'm sure during that time you've
experienced a whole range of emotions and I wondered if you could tell us a bit about any coping strategies
that you've developed during that time?
I've always tried to see kidney disease as part of my life rather than the whole of my life. When I was on
dialysis for example, I always felt that I dialysed to live and not live to dialyse.
So it's important to put kidney disease in its place if you like, and
think of it as something that you have to deal with but it's not the whole of
your life. I also think it's important to be kind to yourself, to try and do things
you enjoy, every day if possible. Sometimes there isn't time. That's always been my philosophy.
Can I ask you how important has it been for you to take control of
your condition and manage it yourself in conjunction with the hospital team?
I think it's been absolutely essential really. I'm sure I wouldn't be where I am today if I hadn't.
I've always felt safe in that knowledge that the kidney team is there to support me if I need it.
We have a huge team here in the renal unit, as you know. We
have social workers, psychologists, dietitians, pharmacists, physios,
occupational therapists as well as all the doctors and nurses. Can you just tell
me a bit about how you feel you've worked in partnership with those people?
Well looking back 40 years I do remember having a long chat with the dietitian
and talking with her about what I like to eat and what I didn't like to eat and she
was able to help me deal with the kidney diet. I know that the pharmacists when
I had my transplant were really good at explaining how to take my medication and
when. I'm sure I've still got their notes somewhere through all these years.
The I've the other thing is I've always known that if I have a question, even if
the person doesn't know the answer, they certainly know someone who does and they
can find out for me and get back to me.
That's great, thanks very much Sue.
Hi, my name is Amy and I work as a clinical psychologist in the renal unit. My role in
the team is to support people to manage the psychological impact of living with
a long-term condition such as kidney failure. It can be really normal to
experience a wide range of emotions when you're faced with living with a
long-term condition and this can affect how you feel but also your family and carers,
and deciding on what treatment you might choose can be challenging. Some people
might feel low or worried, uncertain about what the future might hold for them,
especially if they have to choose a treatment that might change the way that they live their life.
Hello I'm Pauline. I'm a renal social worker at Guy's and
St Thomas' Hospital. Part of my role is to empower patients, advise and support
them with discharge planning, financial and housing issues. I work closely with
social services and together we can assist you to access the support you need.
This morning I went on the ward and as soon as I saw one of the patients he
was saying "Oh thank God you're here" so I think they really appreciate us being here.
We hope you found these four films entertaining, informative and helpful, but
they really are just an introduction and I'm sure you have lots of questions, so
next time you come to the clinic if you want to know anything do ask the kidney
team, and there's plenty of written information as well if you'd like to
know more. And finally, we do have a team of patients who've been trained to act
as peer supporters so let your kidney team know if you'd like to speak to one of them.