My CF story

Hi lovlies,

So it's day two of awareness week so I thought I would tell you all about my life with cf so far.

Ive not told many people this whole story before but that's mainly because it never comes up.

Since the day I was born I've been in and out of hospital with many problems (none of which I really know) but around the age of six I started to develop a persistent cough.

After being repeatedly told that it was a habit cough the DR finally decided to do a sweat test.

I think I had two of these done and both came back positive for cystic fibrosis.

It was very hard on my family to hear this news and many people close to me had never even heard of it before so I imagne that it was very hard for them to ubderstand what was wrong with me.

As soon as I was diagnosed we had a physio come to our house to teach my family how to give me physio, in the form of percussion.

This involved so one tapping my back at different places for around 20 minutes.

I was also started on colomycin (which is an inhaled medicine). It was giving to me through a big machine which took 30 minutes to complete and made a noise so loud you couldn't even hear the tv on full volume.
Since 2010 I've been on the eflow machine which took 5 mins and was silent to the ineb which takes 2 mins and is silent.

Although I was aware that not all my friends where going through this and having to come home early so that they could do their medicine it never bothered me at all (until I was around 13).

The main problem I remeber having throughout primary school was severe pancreatitis. I had many admissions over the years as the pain used to be so bad in my tummy that I couldn't walk and I couldn't eat meaning I had to be on a drip.

This pain was caused by high amalase levels.

At this point I was started to creon 10000 which I have to take every time I eat to help digest my food.

One DR also decided to put me on a low fat diet to control the foods that I was having to digest, so for three years I wasn't allowed to eat chocolate :( however as I started secondary school I used to eat what I wanted when I wasn't at home and it was later decided that the low fat diet made no difference and was completely pointless.

When I started secondary school my pancreatitis started to reduce and I was told that I would 'grow out' of the pain and eventually my pancreas would stop working.

My main problem now was chest infections. As I became older I started developing more and more infections and for the most part there wasn't a time that I didn't have either pseudomonas or staphylococcus.

My first IVs where in 2012 as my lung function dropped from 80% to 50%.

These helped a lot and although I still had many infections none of them needed IVs again until 2014.

This is when I develped APBA. I was admitted in February after asking my DR because I was aware that my LF had dropped to 50% again and I had lost a stone in weight (with CF, weight gain is extremely important in maintaining good health).

These IVs didn't help me and it wasn't until annual review that my DR found out what infection I had and what meds I needed.

So in March I went back into hospital for another two weeks which finally improved my LF and I was given drink to help me gain weight as well as steriod to help control the inflammation in my lungs and also give me chipmunk cheeks (which I can't seems to shift).

This meant I missed 4 weeks of school right before GCSE's.

The APBA came up again at the end of 2014 so I had another two weeks of IVs in December which also helped me a lot.

Now I am currently waiting for the results of my annual reveiw to find out how I am doing now. All I know is that I currently have APBA again and a microbaterica infection.

My current medicines-
- accapella (physio) twice a day
Inhaled medicine-
-promixin- twice a day
-DNase
Inhalers-
-fostair
-ventolin
Pills-
-creon- 13 a day
-fluclox- 2 a day
-vitamin a and d
-calci chew

Sorry for this super long post. I hope that it wasn't too boring. Thanks for reading.
Please be aware that I have not covered every problem that I have had with CF as some are small and others are too personal and I also didn't want to make this any longer.

Peace love Iz x