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Lizzie04
06-05-2003, 05:31 PM
I would like to know how women who have been advised not to have children are dealing with that. I'm 21, and am engaged to be married, and I love kids. I'm from a big family, and I've always wanted a bunch, but my doctors recently told me that my PFTs are too low to risk having children. This has really bummed me out, and I'm just wondering how other women in the same situation have dealt with it. I know we can adopt, and my fiance is fine with that, but I still wish I could have my own children. So I was just looking for some camraderie, really...most of my friends do not have this problem and want to AVOID getting pregnant.

anonymous
06-06-2003, 12:32 AM
Excuse me Sean......I am a 31 year old woman with CF......Everyone has right to do what they want with their lives. I think this is called FREEDOM.I guess poor people should not have children either because their children will be born poor!Kathi

anonymous
06-06-2003, 01:31 AM
Hi Lizzie, I am a 38 cf patient with cystic fibrosis and diabetes. I was told when i was in my teens not to have children because i have cf. I was very healthy then and had very high pfts. I was told this because my doctor at that time was more worried about what a pregnancy would do to my body even though i was so healthy,you would never know i had cf at all. Well looking back, i have to say i am glad i listened to that advice because my heatlh has gone thru some changes since then . I am now divorced, was diagnosed with cepacia 6 years ago, and had some major problems in the last year with hemoptysis, that required 2 pulmonary emboliztions. There is NO WAY i could handle having a child with the things i have been thru. The decision to not have children was a right decision for me. You have to decide what is right for you. I would not tell anyone,healthy or unhealthy, what decision to make regarding having children, i just wanted to give you an opinion of someone with cf who didnt have children and does not regret it . Having a baby is a very personal decision, and with a disease like cf you have a lot to think about beforehand. Weigh your options carefully, and remember there is always the option to adopt. Its a hard decision to make when you have cf. Be sure you do what is right for you. God Bless, Diane

anonymous
06-08-2003, 03:08 AM
If you don't mind my asking, what were your pft's (since you were told not to have children.) I'm a 20 yr old CFer who very much wants to have children in the future. I'm so sorry that you were told you can't. Best of Luck and congratulations. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Mary

anonymous
06-08-2003, 11:47 AM
Hi Mary.... No i don't mind your asking at all. My pft's at that time were in the 90's, which was incredible and something i havent seen since i cultured with cepacia. (pfts are now in the 50 range<img src="i/expressions/face-icon-small-sad.gif" border="0"> )I think what my doctor at that time was trying to tell me was that, having a baby takes a large toll on the body especially one with cf. When i got a bit older i was told by my new gyn and new cf doctor that with my pfts, i would likely do well with a pregnancy. That news shocked me and had me rethinking the whole idea, but it never came to be. I believe God played a hand in with how things turned out. It has been a roller coaster lately for me and since i live alone, i can not imagine if i had a child. I get so tired sometimes i find it hard to even take care of my cats and lizards. Then there are, of coarse, days when i feel great. ( i cherish these days<img src="i/expressions/face-icon-small-smile.gif" border="0"> ) I dont think i would have the energy to properly care for a child so i don't get mad looking back at what the first doctor advised me not to do. I love my animals as though they are my children and that makes me happy. Then again, things with cf are so different these days, that being pregnant ,might not be as bad a thing as once thought. We do have better understanding of cf, and better medications than when i was a teenager. I think having a child is a gift from God which must be a great experience, whether you carried that child for 9 months or someone else did for you. By the way...... Lizzie, I am curious, what are your pft's? I am curious what doctors think these days are pfts that should be careful about pregnancy. take care, good luck and God bless...... Diane

jmazz
06-08-2003, 06:45 PM
I'm 23 and was told at 17 thathaving children wasnt a good idea. My pft's were at 65 percent now they are at 36 percent. I trusted my doctors opinon and i havent had children. I never really wanted children in the first place because of cf and non cf reasons. I'm glad i listened cause now at my lung fuction its much harder to do everyday tasks then it was when i got married. Ive always been a person who looks ahead and makes decisions upon what might lye in the future. My husband also agreed that having children were too much risk and he didnt want to lose me. So it reallly wasnt a big deal for me not being able to have children. Anyway i have a large family with alot of little ones of all ages so i can spoil them and then send them home to their parents. There is always adoption and serogency (not as common) but neither of those are right for me either. You should talk this over with u're boyfriend but altamatly the decision is u'res just remember the drs dont give u advise on personal decisions if it werent a possible problem

anonymous
06-09-2003, 01:46 PM
Hi everyone...thanks so much for all your input. Keep it coming!! I really appreciate it. My PFTs are in the low 40s, but I have a history of crazy infections that just pop up out of the blue...I really appreciate all this input. This is great. Thanks so much!! Emily (Lizzie is my name because one of my favorite books is Pride and Prejudice)