INFUSION
MATTERS
This has been produced by Bayer
WHY DO I
NEED TO HAVE
INFUSIONS?
Haemophilia is a condition that affects your body’s
ability to clot blood. It is a genetic condition which
leads to low levels of factor VIII – a substance that
is essential for your blood to clot normally. In order
to top up the level of factor VIII in your blood, you
need to receive regular doses of factor VIII.
Nowadays most young people with haemophilia
receive preventative factor VIII treatment as an
infusion either every other day or three times a
week. These infusions help your blood to clot so
that you are less likely to develop a severe bleed.
A study in young children has shown that
preventative treatment – also known as prophylaxis
– not only is very effective at preventing bleeds,
but also can help to protect joints from damage
caused by bleeds that go unnoticed. It is therefore
important that you continue to take preventative
treatment indefinitely or until your doctor decides
otherwise.
“
Prophylaxis is the optimum treatment
for children to maintain an active and
healthy lifestyle. If you’re finding it
hard, talk to your haemophilia centre –
they’re there to support you.
”
Nicola Mackett, Haemophilia Nurse Specialist,
Royal Liverpool Children’s Hospital
WHY ARE
INFUSIONS
DIFFICULT
IN YOUNG
CHILDREN AND
OLDER ADULTS?
From a very young age, children with haemophilia
receive regular infusions of factor VIII treatment.
An infusion is administered as an injection into a
vein. They may be painful in young children and can
be difficult to administer because children’s veins
can be difficult to find. Because of this, infusions
can be stressful for the child or their parents, who
either have to administer the injection, or watch
while a haemophilia nurse administers it.
To help to reduce the distress associated with
infusions, a child may be fitted with a
PORT-A-CATH®. A PORT-A-CATH® is a type of
catheter. Catheters are small tubes that are placed
inside a vein and then connected to a port, through
which drugs are injected or blood samples taken.
The catheter and port provide permanent access
to veins, without the need for repeated injections.
Some older people over the age of 50 may also
experience problems with infusions because they
may not have received preventative treatment as
children. Consequently, they may have damaged
joints, particularly their knees and ankles. They
may also have problems straightening their elbows
or have veins that are difficult to inject. Therefore,
they may need to have a carer or nurse to help
them with their infusions.
WHAT CAN I DO
TO MAKE MY
VEINS EASIER
TO FIND?
Before you self-administer your factor VIII
infusions there are a few things you can do to
make it easier to find a vein:
Make sure you are warm as this helps
your veins to stand out
Make sure you have regular drinks
of water as this makes your veins
appear more prominent
Treat yourself after
a warm bath or shower
Squeeze a stress ball to pump up
your veins before you inject yourself
Finally, it is important to keep fit. By taking part
in sport you can develop strong muscles and
therefore good veins. The less fit you are, the
worse your veins are likely to be, making it difficult
to administer infusions. For more information on
how best to keep fit with haemophilia, visit:
www.factorfitness.co.uk
Before you take part in any sport it
is important that you seek medical
advice from your haemophilia nurse,
doctor or physiotherapist.
WILL INFUSIONS
DAMAGE MY
VEINS?
If you keep inserting a needle into exactly the
same place on the same vein lots of times, it
may develop scar tissue and in the future it
could become more difficult to use this vein. It is
therefore important that you protect your veins.
Firstly, change the vein that you use for your
infusions regularly to reduce the development of
scar tissue. There are several veins in each of your
elbows and on the back of each hand that you can
use for your infusions.
Secondly, secure the butterfly with a piece of
medical tape to prevent the needle from slipping
out during the infusion. And finally, you can help
your vein to heal without scarring by pressing a
cotton ball onto the injection site for five minutes
after your infusion is complete.
If you find infusions particularly painful there are
topical anaesthetics available to relieve the pain.
Your haemophilia nurse will have more information
on all of these points, if required.
“
Although giving regular infusions may prove
to be difficult it is important to persist. So
do all you can to protect your veins and
make infusions easier – speak to
your haemophilia nurse for help.
”
Susan Hook, Haemophilia Nurse Specialist,
Edinburgh Royal Infirmary
WHAT
HAPPENS IF
I INSERT THE
NEEDLE
INCORRECTLY?
When you are injecting something into your
body you do have to be careful. However, your
haemophilia nurse will teach you the best way to
inject yourself and you’ll have plenty of time to
practise before you do it for real. You can always
speak to your nurse if you feel uncertain about any
aspect of the infusion process.
When inserting the needle for your infusion there
are a few things you should be aware of:
A blown vein
Don’t worry. This isn’t as serious as it sounds.
It simply means that the butterfly needle went
into the vein, but came out the other side. If this
happens, don’t try to continue with that vein.
Apply pressure and then simply try again with a
different vein. You’ll be able to use the vein again
once it has healed.
A missed vein
If you miss a vein and inject factor VIII into the
surrounding tissues, it may hurt. This can happen
if you miss the vein completely, or if you insert
the needle into the vein correctly, but the needle
moves once it has been inserted. Again, if this
happens take the needle out, apply pressure and
try with another vein.
Contact your haemophilia centre for more
information on needle insertion.
CAN I GET ILL
FROM INJECTING
MYSELF?
If you damage your skin, for example when you
fall over and graze yourself, there is a chance that
dirt and bugs can enter your body and cause an
infection. When you inject yourself you create a
tiny hole in the skin, which could put you at risk of
infection. However, there are plenty of things you
can do to prevent this from happening. Before you
begin your infusion ALWAYS:
1. Find a clean place in your house to do
the infusion
2. Wash your hands and arms carefully
3. Clean the skin at the injection site with
an alcohol wipe
4. Hold the needle by the butterfly. If you accidentally touch the sharp end of the needle dispose of it in your sharps container and use
a new needle
5. Use a new needle for every infusion. Using the same needle twice puts you most at risk
of developing a serious infection
HOW MIGHT
TREATMENT FOR
HAEMOPHILIA
CHANGE IN THE
FUTURE?
Companies such as Bayer are always looking
into ways to make infusions easier for you to
administer. This could be by reducing the volume
of fluid you need to infuse each time, reducing the
size of needles so they are less painful to use, or
developing butterflies that are easier to handle.
Bayer and other companies are conducting
research into longer-acting factor VIIIs. If
developed, these will reduce the number of
infusions you’ll have to perform each week, giving
you more time to do the things you enjoy.
WHAT
SUPPORT CAN
HAEMOPHILIA
NURSES
OFFER?
In general, your haemophilia nurse or one of your
parents will have administered your infusions
throughout your early years. However, when
you reach a certain age your haemophilia nurse
will gradually teach you how to self-infuse your
factor VIII treatment. This will give you more
independence because you won’t have to rely on
someone else to administer your infusions.
Haemophilia nurses have access to a range of
resources to help you as you learn to self-infuse
and they’ll give you plenty of time to practise
before you do it for real. These include:
•Fake arms and models of the backs of hands
with which you can practise infusions
• Tourniquets to help your veins stand out
• Practice syringes and needles provided by the haemophilia centre for you to use during practice infusions
Your nurse may even encourage you to practise
on him/her, or on one of your parents. This is an
important part of the learning process so don’t be
afraid to have a go.
Haemophilia nurses also have access to extensive
information on sport and fitness, and general
health issues relating to haemophilia. Always
contact your nurse or haemophilia centre if you
have any concerns regarding your condition.
WHAT
SUPPORT DOES
BAYER OFFER?
Bayer is committed to haemophilia research and
supporting people with haemophilia:
Funding research to advance the
successful management of haemophilia
Reducing needle sizes and infusion
volumes to aid infusion
Producing infusion aids such as
stress balls and tourniquets to
support patients with their infusions
Creating leaflets and materials
to support patients through their
journey with haemophilia
Developing the interactive website
www.factorfitness.co.uk
With thanks to Kate Khair, Nurse Consultant, Great Ormond Street
Hospital for Children.
For further information contact:
Bayer plc, Bayer House, Strawberry Hill, Newbury,
Berkshire RG14 1JA. Tel: (01635) 563000.
© Bayer plc May 2016. ® Registered trademark of Bayer AG, Germany.
Bayer and
are trademarks of Bayer AG.
May 2016. L.GB.MKT.03.2016.15326a