My Cystic Fibrosis

Here is a little understanding of Cystic Fibrosis (CF) in my life routine

CF is a genetic disease which means you have it from birth. It is from a faulty gene that your mum and dad carry. If both parents carry this gene they have a 1 in 4 chance their child will have CF.

Some people can have worse symptoms than other people with CF.
I have a lot of chest infections which cause me to produce a lot of sticky mucus from my lungs. I have to go on IV antibiotics which are antibiotics that go straight into a port in my side called a portacath. This has a direct line to my heart which can give my body strong antibiotics quickly. I am normally on these for two weeks at a time, sometimes 3weeks if they infection is harder to tackle.

I also get fed through a tube in my stomach at night. This is because due to me feeling unwell i often have a poor appetite. The special milk that i am fed with during the night is full of calories and vitamins to ensure i keep a healthy weight. As you know your self when you are unwell you tend not to eat and can loose weight easily. If you are under weight you have more chance of picking up infection. So this is to help maintain that.

My lungs have to work very hard to provide my body with oxygen and this in turn makes me very tired and weak. Daily tasks can be a struggle from taking a shower, to putting a washing on. For me to have a good day i need at least 10 hours sleep. Sometimes i can wake up and feel like iv not slept because i have been coughing all night or because my lungs have been working harder due to infection. Peoples bodies rest when they are sleeping but sometimes mine doesn't have the chance to.

I have a handful of tablets to take each day. And also tablets after i eat called creon. These creon are man made enzymes which most people produce in their pancreas. Mine doesnt because my pancreas is also blocked with mucus. So when i eat i take creon to digest the food to make sure i get the goodness from the food. If i do not take these tablets i can terrbile stomach ache and diarrhea as no goodness will have been taken from the food i have eaten. I also have 2 different nebulisers that i take. These help break down the mucus in my lungs to help me cough it out, this helps allow more oxygen to get in. Sometimes when i have a chest infection or in hospital i have to receive oxygen through a mask.

I often suffer from sore heads due to oxygen not getting to other parts of my body. I get back pain because i arch my back to try and help to breathe. Long term side effects on IV antibiotic has effect my hearing.


Even though i have all this going on, you will probably notice i still manage to get out and about. Sometimes when i go shopping i use a scooter which in the near future i might need all the time. None of going out is easy though, i have to motivate myself and i know at the end of my daily activities i will be exhausted but hey ho i love life.