Living Life to the Full – Mary’s Story

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.