All about NicNac

Well its almost 1am and im still awake. Nothing new there to b honest. Im usually up well past 4am. So i thought i would write a blog all about growing up with cf, for those who dont no much about me ,and wots happened in the past etc.
 If it bores you ,you dont have to read it...just thought it would b useful :p

Were do i start....well basically i was born with a condition called cystic fibrosis,an inherited disease past down from my parents, and it affects organs such as the lungs,pancreas,kidneys,liver and so on. I was diagnosed pretty early on, just before my cristening. I wasnt gaining weight,and as my mums siblings had it, i was checked out. Sure enough i had it (just my feckin luck ha).
As a child i always remember being in and out of hospital, mostly for chest infections. I would go on a ward called the upper johnson ward which i thought was ace, a ward with my surname :):) Lots of bad memories of being there though, i always remember being pinned down as a kid by 2 nurses wanting to get a nasal tube in my nose down my throat...i will never forget that. I even remember what was on the tv.... that programme on a sat night with dame edna everage and her little sidekick madge :). I sobbed in the playroom for hours,while my sister scoffed her face with quality streets hahaha.
When i was on upper johnson, i had antibiotics to fight the chest infections thru a long line in my arm...I cant tell u how painful those were and the number of times they failed, they totally messed my veins up! dont no how my dads not in prison for murder to b honest :)

I had alot of time off school,but did pretty well considering. I was very private about my condition and never spoke about it to anyone...i was almost ashamed and didnt want to b different. The number of times i did PE and i wasnt fit enough...i would run round that bastard field ....even if i came last! At the age of 8,things were pretty rough, my lung function and weight dropped dramatically. Money was raised at my dads work for me to go on holiday to Florida , not sure if my parents saw this as a last holiday for me cos things had got so bad,hmmm?
When i got back i was started on a new drug called dnas,which dramatically changed my life. I was the first patient to try it in wigan , and it made such a difference. My lung function increased and i missed less school (dam!!!!ha)

Secondary school was pretty much the same... i had alot less hospital admissions though which was good, cos whenever i was poorly with a chest infection ,my mum would give me my antibiotics at home so i didnt have to go in. My mum is my carer, and shes bloody top!!! I would have IV antibiotics every 3months for two week.
Once i left school my health was pretty stable from the ages of 16 to 20.I did all the normal things teenagers do, partying,drinkin havin fun :) I was also refered to Manchester Wythenshawe adult unit for my care.

Id say i first noticed things goin abit rubbish when i reached 20.

Think it started with a nasty infection one winter. I also found out i had cfrd ( cf related diabetes) which really made me poorly. My lung function dropped from around 60% right down to 15%, and it was a very worrying time for me and my family, especially mum. I was put on home oxygen , countless nebulised antibiotics and IV antibiotics. think i was on IVs for about 10weeks! I was also started on insulin to, as my pancreas just wasnt workin the same anymore. All this was a big change for me,and a big eye opener. Growing up i always rebelled from my medication and sometimes even refused treatment. But it was different now....if i didnt do it my health was in deep shit basically.
Once i was stable, the T word was first mentioned to me.....transplant!
Seriously if i could of slapped the doctor i would have! Me and my mum sat there in utter shock unable to take it in. She was a new doctor,so i just assumed she didnt no what she was talking about and told her i didnt want to no.
 Over the next few months ,it would keep getting mentioned and i couldnt keep ignoring it. Luckily my lung function had picked up to 30% , not 60, but hey better than 15!
I saw countless social workers about being listed, and after a year of discussing it i reluctantly agreed to meet with the transplant team. I met with Mo aloul the transplant co ordinator who completely intimadated me on our first meeting....think because hes so clever :). I had countless appointments with him,and discussed things and after my transplant assessment i was listed in 2006. To cut a long story short, i wasnt ready! Mentally and physically. I was still managing to go out with friends, was having more good days than bad and i did everything i bloody could to avoid bein on that list. After being listed for 18months,and no calls (thank god) i was taken off the transplant list. This was mainly my decision, i was NOT ready. I dont think i will ever b truly prepared,but back then,my back wasnt against the wall.

In the 5years i havnt been listed ive had many ups and downs,mostly downs.Two years ago i had a collapsed lung which was probably one of the toughest things ive ever been through,and it still feels like a dream. Its been hard to adapt to this way of life but i try and keep busy and positive best i can.

Ive now been off the list for around 5years and my time has come to go back on it. How do i no its time? WELL....Health wise, my lung function has slowly deteriated and im now down to around 18% ,so basically only 18% of my lungs work. I now need more iv antibiotics ,which dont work like they used to and i now need oxygen 24 7 unless im bein stubborn :p. Getting about is alot more tricky , and i havnt been shoppin since october SHOCKER HORROR haha. If i was to go anywere my oxygen saturation drop dramatically,to around 65% (should b 97-100) and my lips go blue, so theres no goin on king street dancin for this girl haha.But this is the type of thing i look forward to doin when i get my new pink sparkly lungs :), goin out with my girls again, shoppin,holidays and dating.
People take things for granted....being able to wake up in the mornin and fill there lungs with air,something im really looking forward too :):)

Well i hope i havnt bored you all to death lol....nite x :) x