To Moms w/CF

[anonymous]

Hi.I'm 30, with CF and I'm wondering about having kids. I know there are CF moms out there, but I'm wondering what it's really like? I hear parents say all the time how they're totally sleep deprived and how the kids take everything out of them and they don't have CF. It's scary to me!! Right now I don't have kids and already find myself low on energy. I work part-time, come home and usually nap for an hour or two. And all the time it takes me to do chest PT, exercise and nebs...well, how do moms with CF do it all? I just imagine myself having a baby and wanting to cry from exhaustion.Also, what happens during the pregnancy? What meds are you allowed to take? Do you continue with your chest PT until the very end? What about exercising? Does it take a huge toll on your body? Is it necessary to get a tune up right b/f you plan to get pregnant or following child birth?Finally, I know this is kind of weird, but what do your kids say about your cough? I know little kids are so innocent and don't understand. When they hear me cough they always look at me funny. Do you just explain it to them like "Mommy coughs and this is OK." or what?Thanks for any advice you can offer.

 

[Dea]

Hi There,I am a mom with CF. I am 29. My daughter turned 5 this past March. First let me tell you as you already know that each person with CF is soooo different although our main problems are similar. The severities range so much! I work full time and am a full time wife and mother. Yes I do get tired. Before I tried to get pregnant I talked to my CF doc and made sure that I was as healthy as I could be. I started taking prenatal vitamins even while I was trying. I did not stop doing anything that I had done before I was pregnant. I even worked most of my pregnancy...up until the last couple of months. A woman with CF and who is pregnant is considered high risk so you will see the doc more often. As for medicines.....all mine were ok to take while I was pregnant. Antibiotics are fine while one is pregnant also. This is going to sound funny...but I was the healthiest I have ever been while I was pregnant! I felt great! I had more energy...I also gained almost 20 lbs....for me that was great! My docs were impressed and even amazed! My problems came after I had my daughter....I was diagnosed with CF related diabetes almost 7 mos. after my daughter was born. But she is well worth it! I love my daughter...she is the best thing that has ever happened to me. I love being a mom! But it takes alot of energy to stay healthy!It's funny you ask about what to tell your child when you cough. When my daughter was young...still a baby....my mom, my sis and I would take her and go shopping. I would go off in another direction and my mom would have my daughter in the stroller. I dont even realize how much I cough.....my mom said that when I would cough my daughter would look around and try to find me!!! So she was used to it as an infant...and has never asked me about it! But I have explained to her about CF. I have told her that mommy coughs alot and has to take medicine when she eats so her belly wont hurt. I try to explain to her when I am sick and what my medicines are for. I have never told her about the long term effects of CF. I hope and pray that I am well all of her life, but when and if that time ever comes.....I will tell her then. She is very smart and understands all I tell her. It is so cute...when I start to tell her something about the disease...she says "I know mom....it's because of your CF". So don' t worry about what to tell your own child when and if that time comes. All will be ok!If you would like to talk about anything my email is deamason@msn.comDea

 

[anonymous]

Dea,Thank you so much for your message. It made me feel a lot better. I don't know anyone w/CF besides my brother (and he's a guy). It helps to hear from women. I never thought about the benefits to pregnancy i.e. weight gain. And never thought about how the cough could be a benefit to your baby b/c they could recognize you. I guess it's all how you look at it. Good to know!I take it you had your daughter when you were 24. I wish I had a child at that age, as CF doesn't get easier as you get older. BUT, school and work just took me in a different direction. I'm not even married yet, but have a serious boyfriend and have started to think about the future.I think I'm fairly healthy, as my last clean out was in 2000. I probably could use another...just have a case of major denial. So, anyway, I do think I can have kids. I just worry...a lot. So, thanks for your story. It's inspiring for me.

 

[Dea]

Hi Again....I just wanted to tell you after reading your reply to my reply (sounds funny) that I also have a brother with CF who is 22. I also have a sis who is 28 with no CF. My biggest worry about having a child was will he/she have CF. We did not have my husband tested...so it was a waiting game. Thank goodness when we had her tested at 6 mos. old the sweat test came back negative! I was sooooo thankful!I would like to talk to you sometime if you wouldn't mind. I dont know anyone right at my age with CF...I know lots older and lots younger. What kind of problems do you have with your CF? Besides the CF related diabetes, I have always had problems with arthritis which they believe is CF related because I have had problems with it since I was about 10 yrs old. Last year I also started having major problems with my thyroid gland which ended up with surgery for removal 3/4 of the thyroid gland. They also believe it to be CF related. I also started having sinus problems about 3 yrs ago...never had any trouble with it before. It's taking alot for me to stay healthy anymore. Seems like everything I do...still isnt enough! Anyway...email me and we can talk back and forth. If you are msn ....we can chat. Anyway....I'm glad you are doing well! I wish you the best of luck with having a child (or children). I decided that I would only have 1...because I did so well throughout my pregnancy and I'm fairly healthy now....I do not want to risk my health anymore.Take Care!Dea