One of the key attributes of HITH and home infusion of
antibiotics is it's user friendliness for patients. This is
especially important Cystic Fibrosis patients where home IV
therapy becomes part of their lives.
Cystic Fibrosis is a genetic disease which affects over
3000 Australians. People living with this condition face
challenges daily and must remain extra vigilant to stay well.
Over the next few months the Home Calling will be sharing some
inspirational stories with you of people who haven’t let Cystic
Fibrosis slow them down. This week we meet Mary and the team at
Westmead Hospital in Sydney.
I am 30 yrs old and was
diagnosed with Cystic Fibrosis when I was just 1 month old. I
live with my husband and two dogs and work full time in a busy
marketing / event management role. Thankfully I only need to be
admitted to the respiratory ward once or twice a year for an
extended stay or a “tune up”. But managing my condition does
require a lot of work – I’ve calculated that I spend around 20
hours each week looking after my health.
Cystic Fibrosis is a disease
which is caused by a recessive gene abnormality. The main organ
affected is my lungs – I practice daily physio and use a
nebuliser to keep them clear. But I would say that really every
organ in the body is affected by CF (except for the brain that
is.)
My body can’t absorb fats
properly, so I need to take supplements - sometimes up to 40
tablets a day - to help with digestion. It’s really difficult
for me to put weight on, but very easy to lose it. So I really
have to watch what I eat – not just how much, but also make sure
I am not just loading up on soft drink and lollies. Most people
with CF need to consume around one and a half times more
calories than the average person just to keep up the energy
levels! Long term use of medication can also affect the kidneys
and liver, and I do have CF-related liver disease. Reproduction
problems and reflux are an issue, and there is also an increased
risk of diabetes and osteoporosis, although thankfully I haven’t
had to worry about that so far.
Despite all of the challenges I
think I’ve actually had a pretty good run. I work hard to look
after my diet and exercise, and I really believe that being
proactive in managing my treatment is my job. I’m always ready
to challenge the status quo, and make sure I’m up to date with
any new drugs or techniques that come along. Proactive patients
tend to do better – I swim whenever I can as swimming is a great
exercise to help maintain good lung strength. I‘m also a regular
down at my local gym.
Whilst I do need the occasional
hospital stay, on most occasions I can return home after a week
or so and continue my IV antibiotic treatment using the Baxter
Intermates. I am always on two different antibiotics. The first
one is delivered over 30 minutes via the Intermate. The second
antibiotic most people have in a 24hr Infusor, but I choose to
use the Intermates for 3 x 2 hour doses each day. This means I
can have my infusions when it suits, and then attend work and
the gym as free as a bird.
I’ve been doing home IV since I
was 12 yrs old. In the bad old days you basically had to have a
whole ward set up in your home – bags, lines, and burettes - the
whole lot. Gravity feed was a very hit and miss way of delivery
drugs and required lots of guess work, plus the 100s of bits and
pieces that went with it. I then progressed to pumps at home -
this was better but I still had to reconstitute all of my own
drugs which was a hassle.
With the Intermates you don’t
need a pump, you don’t need to mix anything or work out flow
rates. It’s all done for you. All you have to do is make sure
your environment is clean and use proper technique to change the
devices. When you are on home IV you are generally still quite
unwell, so anything that takes all the fuss out of treatment is
an absolute bonus. It’s so quick - I can have a shower without
fussing and if I do need to pop out I can just pop it in my
handbag.
At the end of the day, I do
think that I have been pretty lucky – I lead a really full life
and whilst there is a lot of extra work I do need to stay on top
of things, I haven’t ever really known any other way. And if I
do need some extra help I know that the team here at Westmead
are ready to support me.