are there any cystic fibrosis patients here?

karel · Newbie Joined: 13 Nov 2003 Posts: 6

Are there any cystic fibrosis patients here? I would like to speak with someone who has this illness, so that I would know what would await my baby if I decide to keep it. I know that this might sound cruel, but I do not want my child to suffer and have life far from normal and healthy. Please, doctors said that it can be kept under control, but that answer is not good enough for me. I need more.

zarla · Newbie Joined: 26 Mar 2006 Posts: 7

I had a cystic fibrosis patient in my house for 7 years, my little son. I decided to not let go of him, and even today I cannot say whether that was a good decision or not. It is a genetic illness; there is no effective cure, only with help of heavy medicaments you can keep it under control. He was almost always under lung infection, and he developed diabetes mellitus. Believe me, it was very, very difficult and stressful, watching my young one wither each and every day, and seeing him die short after his seventh birthday. I loved him, I still do, but if someone offered me to pass through all that again, I would say no without hesitation.

mtinker · Guest

my dad has cf, i am in the process of being tested for the disease, which can in some cases not be spoted until late teens, there is a good chance i have cf. your baby, should live a long and full life, life expectancy is between 40 and 45 atm. he/she will be able to do most of the things kids without the disease.

shamilton · Newbie Joined: 20 Dec 2007 Posts: 3

my husband has CF and he has had a pretty normal life. the worst part that he hated was spending two weeks in a hospital room. (that because he's really energetic!) but i understand why you are worried karel. yes there are more precausions..like they can't play in the snow as much as the other kids and they are more common to getting colds, but as long as you keep up with its doctor visitsand make sure it takes all its meds everything should be normal. they get to go to school, they can have a normal life. most of the meds a CF patient has is pills and vitamins. i hope this helped with your decision.

emmarose · Newbie Joined: 17 Aug 2008 Posts: 1

I have cystic fibrosis and was diagnosed when I was three months old. I am 24 now, and although I have was able to lead a mostly normal life until I got to high school it was no easy task dealing with all the baggage that comes with having CF. I am now in the processes of contemplating a lung transplant, which is not a simple decision.
The treatments, medications, therapies, and surgical procedures to treat CF have come a long way, however it is a devastating and challenging illness to live with, and I would strongly urge you to not have a child if you and your partner our both known carriers of the CF gene. 1 in 4 odds are not something I would mess with when dealing with something like cystic fibrosis.
This may sound harsh, but I have lived almost 25 years with this disease, and if I had the opportunity to prevent an unborn child from suffering like I have then I would do anything in my power to prevent having a child with CF.

are there any cystic fibrosis patients here?

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