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@example.com. I would be more the happy to help you out.
1. How long have you had CF?
If you have cf, you're born with it.
2. When did you find out?
When I was 6 weeks old
3. How do you feel about it?
Well for the past 2 years I've been going through depression, although some days I just accept it. I'm mostly upset and withdrawn though.
4. How is your family coping with it?
My family "ignores" it, I get treated like my sister (who is cf free). Except for hospital appointments and stuff of course, lol.
5. Are you open about it or are you still uncomfortable talking about it?I'm comfortable in telling people I've never met (like on here) and other people with cf. I've never told anyone, only my family knows and family friends.
If you want me to elaborate or have any other questions or anything, you can email me on : firstname.lastname@example.org
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:)
Post Edited (Darkies Gem) : 12/16/2008 2:03:26 PM (GMT-7)