Knock Knock....Hello!

Well i've decided to do one of these to give me something to do as i'm abit bored at the moment, I may keep it up, I may not. We shall see!

So heres a long summary of me....

I have cystic fibrosis (will be called cf from now on) and heres my copy and pasted description of what cf is from the cftrust website

Cystic Fibrosis (CF) is the UK's most common life-threatening inherited disease. Cystic Fibrosis affects over 8,000 people in the UK. Over two million people in the UK carry the faulty gene that causes Cystic Fibrosis - around 1 in 25 of the population. If two carriers have a child, the baby has a 1 in 4 chance of having Cystic Fibrosis. Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with Cystic Fibrosis.
Each week, three young lives are lost to Cystic Fibrosis. Average life expectancy is around 31 years, although improvements in treatments mean a baby born today could expect to live for longer.

So there is your little introduction to cf. It affects me in a variety of ways, I have constant chest infections, the main one is called psuedomonas (I hope I spelt it right!). This bugger causes inflammation in my lungs and leads to lung damage. It likes living in my chest as its all moist from the mucus, people without cf don't really get it so people cannot catch it from me unless they have cf. Hence why people with cf are not allowed near each other as they can pass infections to one another. I also have aspergillus which is a fungus and staph which I don't know much about. Lets just say my lungs seem to welcome anything to come and make a home in them!

I get tired very easy as my body is fighting infection all the time, when the infection gets too much I have to have intravenous antibiotic treatment, also known as iv's. Generally I can do these at home but if I get really ill I may get admitted into hospital. It depends what antibiotics i'm on but generally I am put on 2 different types that I have 3 times a day.I have iv's through a port in my arm which is accessed with a special needle, I have no decent veins left for regular venflons and longlines (you may know them as cannulas or for those who do not know medical terms, they are needles! argh those scary things!). I recently got a new port as my old one packed in, heres a picture of it accessed, the needle stays in the whole time i'm on my iv's which is usually 2 weeks but 3 weeks this time as i'm not too well. I usually end up having my iv's every 3 months, i'm currently on my third lot of iv's this year


I have digestive problems and take tablets with my food and vitamins as I dont absorb them properly. I used to have tablets called pancrease with my food but they stopped making them, most people with cf have creon but they don't agree with me so i'm on nutrizym-10. they don't agree with me very well either. Lets say I get lots of bloated bellies, constipation or the opposite and i'll say no more on that subject.....

Because of my infections and I don't absorb all the nutrients from my food I have to eat more than the average person, infact I eat ALOT and don't get fat. I'm 8st 8lbs at the moment, the doctors like me to have abit of weight on me as if I get very ill my weight goes down and I lose my appetite. When I was younger I didn't eat and had to have a feed overnight. I seem to do ok now, which is good!

I do physio everyday (at 6.30 whilst watching Hollyoaks, if you would like to know exactly when I do it!). I get patted and have a mask called a pep mask which I blow in and out of. This is to try help loosen the mucus to cough it up. I also do nebulisers through an i-neb, it makes the liquid into a mist that I then breathe into my lungs. I have a nebuliser called Dnase which makes mucus easier to shift ( I think it makes it runnier but not sure!), I do that once a day and I also do nebulised antibioics twice a day.

I also take a hell of a lot of tablets, I shall list them for you!! (i'm not sure what some of them do but i'll have a guess)

Calchichew-D3 Forte - for my bones as they are very brittle
Risedronate- also for my bones
Vitamin E - don't know what vit E does but I don't absorb it very well
Vitamin K - see above
Vitamin A & D - see above the above
Lansoprazole - stops my stomach acid stopping other tablets doing their job, mainly my food tablets
Singulair - to stop wheezing
Ursodeoxycholic Acid - for my liver, I think people with cf can get liver problems
Taurine - also for my liver (I think!)
Azithromycin - an antibiotic to try stop inflamation
Movicol - helps keep me regular :o)

I also have some inhalers, ventolin and symbicort.

So theres the basic facts of my every day stuff.

As I already said, currently I am on my third week of iv treatment, i've been off work sick and recently handed my notice in as I don't feel I can work full-time and stay well. I had my new port fitted just under two weeks ago so my arms are still abit sore. I'm due to finish my iv's on Wednesday, I do feel alot better as at the start I was so tired I could barely be bothered to move and I lost my appetite which is back now, however I still don't feel brilliant so we will see what they say on wednesday. Lung function last week was fev1 39% (this is how much air I can blow out in the first second, it is 39% of what someone my age and height should be) fvc 63% (this is how much air my lungs can hold, so it is 63% of what someone my age and height should be). I hope they have gone up abit by wednesday!