Kristy

[Guest guest]

Well as I said to Kristy's specialist a couple of weeks ago, she is

so well at the present time, I felt like a fraud being at the

clinic! The current treatment they have her on is really working

and it's my personal opinion the turning point was when they started

her on Pulmozyme early in July.

Anyway, a week ago Kristy handed me a story she had written about

what has happened to her in the last two years. I hope you will all

indulge me and let me post it here, it is rather long. Kristy is 12

(13 in January) and is very happy for her story to be shared with

you. My husband, Kristy's sister and I are so very proud of her

Kristy's story:

Ok, I'm not very good at stories but I'm going to try and write one.

Have you ever been out for a night in the cold air with as much

stuff on as possible knowing you've got asthma gone back home and

your life has never been the same again.

Well that's how my life has been ever since we had a Japanese

exchange student in 2000.

Every year when they come they have a greeting BBQ and my family had

a student for the first time so we went out for the dinner and my

life has never been the same. You see I guess it was too much cold

air or something but a few days later I got a really bad earache and

it turned out to be an ear infection but what I didn't know is that

it had already got down to my chest for what my family and I thought

was asthma but it wasn't.

I got this cough and it was thick and yucky and tasted foul most

times when you coughed. Most people would think yea yea so what,

still it matters.

Since I saw a doctor when it started I went around in circles " it's

another infection here's some antibiotics " " It'll go away soon if we

treat it " but no matter what they did or how they treated me it

always came back like it liked me or something.

After seeing numerous doctors and I was staying at my Nanna's with

my family I came down quite crook, so Mum rang the doctors and got

me an appointment for when we got back home. I was so scared when we

walked in because it wasn't my normal doctor it was a different one.

We sat down got called in and every thing they do and the doctor

said " This young lady has a lung condition I'll give her these

antibiotics and I would like you to come back and see me soon. " He

also said " I would also like to get her checked up by a chest

specialist at the women's and children's hospital " . Now finally we

were getting somewhere but this is one and a half years on.

Something that's really helped me get through this time apart from

my family I couldn't live without (their the biggest help in the

world no matter what) were and are the children's group Hi-5. I

guess that seeing their smiling faces and their brightness helps you

get through a lot. For the two times I've been in hospital this year

they have got me back up from off the ground when my sister and dad

couldn't be there and when mum had to go out for a while. They

really are a great help.

Anyway back to where we were, After seeing a brilliant Hi-5 concert

in Adelaide my first one a month or so later my mum, dad, sister and

I went to the children's hospital for my first appointment with the

specialist. I sort of walked in as nervous as I could be had some

pulmonary function tests done had the appointment had a couple of

other tests done (like a blood one that really hurt) and left to get

some lunch then go to see a physiotherapist that said to the

specialist " She has a worse cough then some of our normal Cystic

Fibrosis patients " well that was true.

Then after the tests came back I got put on a three month course of

antibiotics which I reckon I grew a resistance to. I also got

referred to an ENT specialist. In which I had some scans done and I

had to have surgery done to fix the problem, to which I said " I was

stuffed " . So after everything got organized I went into surgery. I

had the normal surgery but the surgeon didn't have to do as much as

planned because my sinuses had started to clear up but I still had

the cough. At this time they had suspected I had cystic fibrosis

which mum and dad thought no because I've been told my whole life

that I didn't have it. Any way the story goes on……….

I came out of there after not one but two weeks of IV antibiotics,

got home felt a bit weird and all that type of stuff came down crock

became better again then I came down really sick around Easter. I

went and saw the doctor on Tuesday and got admitted then and there

in a country hospital. The people there were really nice. After

spending a week there they got a sample off it came back two days

later. I got a bug that you can't treat in country hospitals and

the next day I was back down in the children's. It was then that

they said if she has got this bug it cant be anything else but CF so

a trip was organised and I went to Sydney in July.

I had two nasal tests (I can't remember exactly what they were both

called), more then 17 tubes of blood taken and some other nose one.

Then they said this child does have CF that was quite a shock well

not that much but still a big one.

After coming back from the ten hour trip I went to see the

specialist and got put on some different medication and I've boomed

ever since then.

Now I'm as well as I could be I think I have shocked doctors,

specialists, physio's and most of all my family who a year ago never

thought I'd become this well. I'm pretty happy with what I've

achieved and I'm going to have a very good Christmas even though I'm

on loads of medication. I've taught myself that if it keeps you

well then it's a good thing after all. Oh and just before I go I'd

like you to hear my saying " even though I'm different I'm still

special and nobody in this world can stop me from saying that and I

will always follow my dreams " .

Barbara

Mum to Kristy wcf