Needing Help!!!!

i would be more then happy to answer you questions.

Well i am 20 year old Male

1. How long have you had CF?

I have had cf since birth

2. When did you find out?

well the same as above lol

3. How do you feel about it?

Well i really depends on the day, some times i feel pretty darn good about life and other days i feel like crawling up into a ball and laying there all day.

You will probly find that most cf's go through a stage of depression.

And YES i find it hard to come to terms with that possibly in 5 to 10 years time i will be in a hospital bed on full time oxygen and awaiting a transplant.

Like i said i have found i out that i had CF when i was born so i have had to deal with it my whole life, and after reading some of the other posts about people who have only been diagnose with CF 1 maybe 2 years ago, i would say that they are dealing with it pretty hard.

4. How is your family coping with it?

Well my parents deal with the best they can, i also have a younger brother who has CF, so my parents have double trouble :P.

I guess it is always in their mind,"What could have we done different" and there is nothing i figure this is how life is meant to go.

5. Are you open about it or are you still uncomfortable talking about it?

When i was younger i preferred not to talk about it unless i was with my good friends but within the last few years i have come to terms that this is my life and i shouldn't be afraid of it.

I have also recently in the last 3 years found a very beautiful girl who i have proposed to and we will be getting married shortly.

PLEASE if you have anymore questions or if you would like me to ellaborate on these send me an email at [email protected]. I would be more the happy to help you out.

Cheer Kyle

I am a mommy of a CF baby.  He is now 3 months old.  His name is Aiden.  My husband and I had no idea we were carriers so the diagnosis was a complete surprise.  He was diagnosed by a mandatory newborn screening for metabolic disorders.  The diagnosis part was probably the most intense, difficult part of the process so far.  It was very very emotionally draining.  From the first day at our 2-week baby check up, the doctor told us his screening came back elevated and we would have to re-do the screening to make sure it wasn't a false positive.  He assured us over and over not to worry, that this happens quite frequently because certain levels in newborn blood can be unstable right after birth and don't stabilize until a few days later.  Then the second blood test was positive.  Again, we were told that sometimes this can happen, there can be other things that make the IRT levels seem high and that we shouldn't be alarmed- most likely he did not have CF.  The following day, we scheduled a sweat-chloride test at the University Hospital.  That evening, we got the call that changed our lives.  The sweat test was positive, with  a level of 100.  Not borderline... just positive.  Aiden had CF- genotype later showed a Double Delta F508.  I remember feeling very numb that day.  From the day we had the "potential" from the first blood test I had been doing research- grabbing onto any info I could find about CF and becoming more and more afraid.  I had myself worked into a panic.  I cried, I held my son, cried again... I was a wreck.  There were times I threated to my husband that we would sue that newborn screening agency if the results were negative because of this emotional stress it put on our entire family.  Now I'm entirely grateful for the test.  We were able to start him on enzymes from 3 weeks of age.  He is currently in the 70th percentile for his weight- we don't believe he was pancreatic insufficient at the time of diagnosis.  He takes 3 medications.  Enzymes, vitamins, and Zantac for reflux.  His only symptoms so far have been stomach discomfort and a morning cough.  His nose is always stuffy too.  I still worry.  I don't know what the future holds.  I wonder every day what his life will be like.  When I hear that cough, I get scared.  All you can really do is take each day, one at a time and count each as a blessing. 

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.