My life with Cystic Fibrosis

Cystic Fibrosis (CF) is a genetically inherited condition which affects all the organs within the body. The mucus within the body is very thick and sticky, clogging up the lungs and the digestive system, which can lead to problems such as pancreatic failure. The effects of CF on each individual differs. Many CF sufferers develop CF-related diabetes, and I am fortunate that I don’t have that.

As of yet, there is no cure for Cystic fibrosis.

That means the treatment is constant.

Treatment includes physio therapy on the chest in order to clear the lungs. This is often done using breathing techniques which clear the mucus from the airways. Physio exercise as often as possible is also strongly recommended in order to keep the lung function as high as possible. In addition to this, antibiotics are usually daily, and extra antibiotics are routinely required. Inhalers, and various nebulizers are also required in order to keep the airways as clear as possible.

Occasionally, all this treatment just isn’t enough! In this case Intravenous (IV) Antibiotics are given. This is medicine injected directly in to the veins. It can be given in drip format or simply by using a syringe. Under these circumstances a cannula (little tube) is often inserted in to a vein and kept there for the duration of the treatment (which is usually 2 weeks for me). However, as this treatment has been used so often, the veins can become bad. In these circumstances a Port-a-Cath may be used. This is permanently under the skin. The tube channels  in to a vein, with a little circular rubber end, which a needle can be inserted in to during IV treatment. (I’m currently on my third Port-a-cath in 11 years – the length of time they last can vary).

Picture of a Port-a-cath within the body.
Picture of a Port-a-cath within the body.

In terms of the digestive system – pancreatic failure means the pancreas is unable to secrete the enzymes necessary to break down food while eating. Thus an enzyme substitute called Creon is used in order to digest food properly.  Not all CF sufferers have pancreatic failure, however the majority, including myself, do.

Due to the difficulty digesting food, vitamins are difficult for the body to absorb, thus they are usually prescribed too. It also means a high fat, high calorie diet is required in order to maintain a healthy weight. If a sufferer is struggling to maintain weight ‘build up’ is usually the first course of action, a powder put in milk, similar to the idea of a milkshake, which is high in calories in order to gain weight quickly. Think of the film ‘mean girls’ – the bars Cady’s mum “gave to kids in Africa to help them gain weight” only in drink form instead of bars. Failing that a feeding tube may be required (I have no personal experience of this).

Due to the trouble digesting food and constant chest infections – as well as side effects from the medicine – living with the illness is often exhausting. However from the outside I appear absolutely ‘normal’! I’m often given comments that I look well and that’s part of the problem with cystic fibrosis: you cant see my struggle. I take most of my medication at home and as it is my internal organs which are effected the illness can’t usually be seen. So I guess you’ll just have to trust me with this one – and I’m sure other CF’ers will agree – its harder than it looks! It is a struggle. But I’ll keep fighting!

If you’r looking for more facts or support on Cystic Fibrosis, I would suggest the Butterfly Trust (The Scottish organisation for cystic fibrosis) or The Cystic Fibrosis Trust (for the whole of the UK).

3 thoughts on “My life with Cystic Fibrosis

  1. Hi Catherine, well done it must have taken a great deal of thought and I think you are very brave to be able to write this . Good luck and again well done. Best wishes from Janice & James Salley

    Liked by 1 person

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