So many people have no idea what Cystic Fibrosis is, and some internet descriptions either petrify people or just make no sense so I thought I'd try to explain it in an easier way.
Cystic Fibrosis, also known as CF, is a genetic condition that you are born with. Some people are diagnosed after a few days, some months and some even years if they are 'well'. I was diagnosed at 3 months as I never gained any weight! CF is a degenerative disease, meaning 'it gets worse the older you get'. There is no cure.
Some people live till their 60s whereas others need a double lung transplant at 20. Everyone is different. Lung transplant is an option if you get to end-stage CF but there is a long waiting list and we need more donors to sign up to the organ donation register.
Essentially sticky mucus builds up everywhere and causing all sorts of problems! A couple are:
In the lungs - mucus builds up and becomes very thick and therefore hard to cough up. This means that we get a LOT of chest infections. Even a simple cold makes us more ill than non CFers. Unfortunately, some bugs love mucus and some decide they don't want to leave. For example, I have a bug called Pseudomonas (psuedo) in my lungs and I'll never get rid of it. I just have to take medication to try and keep it at bay and treat any flare ups it gives me. Nebulisers help with either opening airways to help us breathe a lot easier or delivering antibiotics straight to the lungs. Sometimes intravenous antibiotics (IVs) are needed which are VERY strong and treat chest infections.
In the pancreas - this means that we don't get as many enzymes released as non CFers so we have to take enzyme tablets (Creon for me) to help digest our food. And believe me, if you forget a Creon it HURTS..your stomach is agony the next day as essentially, you haven't digested anything! Mucus in the pancreas also means some of us get CF related diabetes as not enough insulin is released so will need insulin and to check blood sugars. Unfortunately blood sugars can go very high when unwell which makes the bugs grow more, so you get more ill, which raises blood sugars..becomes a vicious cycle.
Because we don't digest things easily it can be very hard to gain weight. We also take lots of vitamin supplements and other various tablets like salt or antifungals to help with general health.
On a daily basis I might have over 30 tablets, 5-8 nebulisers depending on which month I'm on, physio and then sometimes IVs when I'm really poorly. Treatments can take HOURS and is quite a monotonous regime which can get so tiring and sometimes its hard to remember what to take at what time..luckily I have a supportive family to remind me!
If you have any questions, please feel free to send me a message or inbox me on facebook.
CF trust website