Just Me

Helllooo there : )

I have decided to do these blog thingy’s as i was a wee bit bored. Thought i would give it a go and see if i can keep it up. Okay, well let’s start from the very beginning : )

I’m Sophie, 15 years old and i have Cystic Fibrosis (aka, CF) and CF related diabetes (aka CFRD).
Do you know what CF is??
Well i’ll tell you, CF is the UK’s most common life-threatening disease. If two carriers of the CF faulty gene have a baby, the possibility of that child having CF is one in four. Cystic Fibrosis affects the internal organs; especially the lungs and digestive system. It does this by blocking them with thick, sticky mucus. This makes it harder to breathe and digest food properly. Life expectancy is around the age of 31, however; everybody is different and some die younger unfortunately whilst others defy all odds and live way past 31.

So there you go, that’s basically CF in a very short paragraph.
I was diagnosed at 13 months old; after my mum & dad were being accused time and time again for being an overactive parent. They knew something wasn’t right though. Doctors kept saying i had ‘whooping cough’. Silly silly fool ! : )
After a sweat test, the results proved i had CF so here i am 15 years later, carrying on with life like normal because to me it is
.
The ways in which i am affected are frequent chest infections; i grow a number of different bugs, i usually grow pseudomonas and staphylococcus. To be honest with you, i’ve had a really good run all my childhood. It’s just since i was 11 i’ve had IV’s and then last year was a really sucky year!! But i’ll leave that story for another day : )
I won’t lie to you every now and again, i do my physio half heartedly when i am knackered at night and if i grab a chocolate bar off the kitchen top i probably wont think to have a couple of creon. This is a pancreatic enzyme that we have to take before we have anything to eat; it helps us digest the food. The number of creon varies depending on the fat content. So anyway back to bugs that make themselves welcome in my lungs. These bugs only affect fellow CF patients and donnot affect a non CF person whatsoever. Hence why CF patients can’t mix, they pass infections onto each other.

Another aspect of my CF is that i lose weight dramatically when i am unwell; when i am well i struggle to stay a healthy weight but when i have a chest infection it plummets. Due to the fact CF patients cant digest food properly, we lose weight and therefore need to be on a high calorie diet constantly. My weight has a battle on it’s hands tho. My COUGH!! :O :O Haha!
I use up so much energy coughing it’s like i have done a 10 mile jog on the treadmill ... the weight falls off me. This is a pain in the bottom but when your ill, it’s a nightmare.

Well here is a look at my daily routine:
I wake up at 7am every school day, takes a while for me to actually get out of my lovely bed though. I walk downstairs, sit on the settee and begin my daily routine.
v Medicines – Around 50 a day.
v Exercise – This is during the day. It’s compulsory to keep my lung functions up.
v Intravenous Antibiotics – This is a form of transferring medication into the body. I have these through a port-a-cath.
v Physio – Two to three times a day. I use an accopella.
v Clearing my lungs, coughing all the mucus up that has lay on my lungs over night.
v Nebulisers – This is a device in which I inhale my medication through. Therefore, this is a better form of having the right amount of the drug.

The coughing begins, my accopella creates oscillations (vibrations) loosening the mucus that blocks my airways enabling me to cough it up and spit it out. 30 minutes pass ... 7:40am, I begin my nebulisers. Salbutamol. Heptonic Saline. Promixin. Dnase (once during the day.). An hour has flown by and it is now 8:00am; I now have 20-30 minutes to get washed, dressed, have breakfast and do my hair and make-up. 8:30am, rushing to the car I grab my bag and coat and set off for school. Ready to do it all again at night.
Busy Day! So I guess you’ve gathered i don’t get to spend my morning perfecting my appearance in front of the mirror like most of my friends. (I give it a bloody good go though) haha! I also have CFRD (CF related diabetes.) However, my blood sugars are controlled well and usually I have no further problems with that side of me. Even with all that to deal with, I am a normal teenager. Well ... actually can you define normal?
What i mean is i am a happy-go-lucky kind girl, that is positive and smiles all the time. I honestly love life with a passion and i wouldn’t change it for the world.I live a normal happy life just like everyone else ... okay maybe with a few exceptions! I go to school, fall asleep in history, laugh with family and friends, go to parties, eat a lot, sing and dance, exercise daily (this is compulsory), shop and love life. Hospital visits are frequent i admit but i’ve gotten used to it. : )

I really didn’t want to blabber on with myself, but WOOPS !
Too late, i might as well continue : )
Nowhere near finished just yet ...To fight against the evil bugs who like to make my lungs their home, i have intravenous antibiotics (IV’s) through a port-a-cath. This is a central line that leads to one of the main arteries of the heart. Here medicines are administrated quickly and cleanly.
I am on IV’s at the minute. This is my third week of IV’s; they seem to be kicking in now though thank god! I’ve been having IV’s constantly since i was 11 every three month for two week but since my bad patch last year (i will explain in a later post) i’ve been having them every 3-4 week. This time however i got through 8 week without needing them YAY!
(I cheated and had two week oral antibiotics before hand though) Haha!
Well my LF (lung functions) have gone up slowly over the past three week. Today they were FEV1 = 54% FVC= 61%
Fingers crossed this last week of IV’s will give them the kick up the bum they need.
Well i think i have babbled enough now, but i quite like this whole blogging thing : )
So i shall defiantly be back fairly soon. Thanks for reading, that is if i haven’t bored you to death : ) Thanks again, take care! Soph xoxox

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