cystic fibrosis

Cystic Fibrosis or CF for short is a genetically inherited life limiting condition which affects the bodies main organs including the lungs, digestive system and sometimes the liver. CF causes the build up of thick sticky mucas due to a faulty gene making it difficult to breathe and digest food properly. It takes two forms of the faulty gene to have a child with CF meaning both parents need to carry the gene and in the UK 1 in 15 people carry the gene. For a person living with CF chest infections become normal. Having CF involves daily treatments and hospital stays for IV antibiotics to help fight infections. The main aim for a CF is to maintain the best possible lung funtion. Lung tranplantation is usually what CFs will eventually need due to the constant infections causinf irreversible lung damage.

So now you know what CF is i can tell you what its like living with it. well i was diagnosed when i was 9 weeks just a tiny baby, i wasnt gaining any weight so a sweat test was done and it came back that i had CF. My family were obviously devestated as they had no idea what CF was or how serious it was. Luckily i have an amazing family who just got on with it and helped me through whatever came along.

For me CF affects my lungs and pancreas and i have alot of daily treatments to do to keep me well each day. I take nebulisers, inhaylors, vitimans, steriods, feed supplaments to gain weight, tablets to digest food, physio twice a day to clear the mucus and insulin as i have CF related diabetes. I worked it out one day that i probably take around 60 tablets a day ! crazy isnt it. As well as all these treatments i still get chest infections so i need to go into hospital to have IV antibiotics to help me fight the infection usually this is a 2 week stay in hospital i am well used to it by now. 

I used to be quite a normal person who just happened to have CF dont get me wrong i was in and out of hospital alot as a child and i got out of breathe easily but i still went out with my friends and went to school. Now well i cant do much i use a wheelchair to get about as i get far to breatheless when walking. I am also on a machine called NIV which stands for non invasive vetilation it basically forces air into my lungs, i used to only use it while sleeping but i need it all the time now. i am also on oxygen through the NIV so you can imagine what its like when we want to go out ! i am constantly on IVS now and have been for a few months now as my lungs just cant cope without them. As you know i am only the list for a double lung transplant, usually when your lung funtion reaches 30€ percent thats when transplant is considered but it varies for everyone as no CF is the same. My lung funtion is around 14 percent just now. 

Thats basically what you need to know about CF and how i live i could tell you my whole life story but honestly it would take far to long !

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