Here's my answers, hope these help. I'm really not very good at answering things about CF without questions, as I can go on forever. Lol, sometimes my knowledge of CF is too big, I used to spend a lot of time researching stuff myself, so I knew what to expect.
1. How long have you had CF?
As CF is genetic, then since I was conceived:)
2. When did you find out?
Just after my second birthday, and just before my brother was born. With a diagnosis factor of chesty cough, very salty skin and bowel problems.
3. How do you feel about it?
It's there, and I wish it wasn't. I know it's probably made me into the person I am today, and give me the strength to deal with problems much more effectively. But at the same time, I'm sick to death of hospital visits every couple of weeks, IV's every 3 months. I seem to be in and out of hospital like a yo-yo. Part of my problem with CF though, is the fact that it doesn't work very well along side the muscular dystrophy thing there still trying to diagnose. It wouldn't be such a problem, if I didn't experiance side effects of raised CPK muscle enzyme levels, with most of my CF medication.
When it was unknown about my muscle problems, I dealt with CF very well, and coped quite well, it was only when I started work that things started to go down hill.
4. How is your family coping with it?
I class my fiance as my family already, along with his parents and aunties and uncles. There were a few problems at the start, as they adjusted to having to make special arrangements for me. Like Christmas, they all used to have bacon sarnies, but I'm allergic to the smell of bacon, it sets off my asthma really bad, so the traditions been nipped in the bud. My side of the family, I'm not to sure of. Growing up was a struggle. My dad left when I was 4-5 my brother was only 2-3. Both of us have CF, and he left because he couldn't cope with that. He left us homeless, with no money, and my mum was pregnant with a child they'd planned. She had to have an abortion, and I think it changed the way my mum was from then onwards. She has always been far to over protective, and I hate it, we were never allowed out after school or anything, never allowed to sleep overs. Just incase whoever we were with didn't know how to handle an emergancy if something happened.
5. Are you open about it or are you still uncomfortable talking about it?
Very open about my CF. I find it's the most easiest way. If your trying to keep everything quiet and hidden things build up. I met my fiance 4 years ago, and on our first date I told him about my CF. I didn't want to not tell him straight off, then him dump me a few months down the line, as I'd not been honest.
I'm very much into raising awareness of CF, and the way I see it is, the more people who understand how CF effects someone, the more chance there is of them donating money when they see CF money-raising things. I'll hold back the things like what happens if I don't take my creon. But then explain how often I go into hospital, and the fact I have to walk with crutches. Especially with the elderly as there more likely to watch the breathing life awards, and sympathise with the fact that sometimes I'm actually more like a little elderly woman myself, and suffer similar problems. With the difference being that I'm too young to have been able to experiance life fully, and will probably never get the chance.
Moderator of the Cystic Fibrosis Forums
Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
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Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.
Post Edited (Darkies Gem) : 12/16/2008 2:03:26 PM (GMT-7)
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