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CAN WOMEN WITH CF GET PREGNANT????????

anonymous

New member
I am a woman with cystic fibrosis. I have heard that woman with cf cannot become pregnant, but I have also heard that they can, but it is more difficult for them to. I just wanted to talk to other women with cf that are pregnant or have kids. I want to know about their experience and how long it took to become pregnant, and if you all did anything special to become pregnant.
 

anonymous

New member
Hi I am 29 with CF. I believe it has to do with how well your PFT's are. My FEV1 is about 49% at the moment. i would love to have children myself but i do not know if it would be possible.
 

anonymous

New member
Hi. I've never been on here before, but I want the exact answers that you do! I'm 28 and jsut got married three and a half weeks ago. My husband and I want kids the sooner the better, but I am also on the list for a lung transplant and have been told to wait until after. I am doing fairly well right now and would love to know the risks involved. Can anyone answer this??
 

RadChevy

New member
Hi, Most certainly CF women can get pregnant and have a successful pregnancy and healthy child. Many, many CF women are moms and did fine. There are also those that did have a child and did not do well and their PFT's suffered.The best thing is to talk to you CF doctor, and make sure they do a full health check on you. Your PFT"s may suffer, so if they are lowish, you might want to reconsider whether adoption would be better.My sister has CF and has 4 kids, none of them with CF and she did basically well through all the pregnancies. Number 3 she had to do some nebulizing, but that was it. She was in great health when she got pregnant.... that is the key.Good luck and let me know if I can help.Joanneluckylungsforjo@aol.com
 

RadChevy

New member
Hi, Congrats for getting on the lung tx list... it is exciting and scarey isn't it?I had my lung tx 7 years ago and doing well. I also have sister who had her tx 3 years ago.Pregnancy- pre tx the risk is of course if you are listed for lung tx that your PFT's will drop further and faster and might be deadly. But the other concern is that when any woman is pregnant, her body builds antibodies. High Antibodies in your system, which hang around for awhile after birth, can mean that your lung grafts could be rejected.... So when you are evaluated for lung tx, they do check your antibodies, and if they are too high, they will not list you as you are likely to reject.Who told you that you should wait to get pregnant after tx? I know that most lung tx centers will recommend you to never get pregnant after tx... the stats are not good. The same theory exists. You build antibodies, they attack anything foreign in the body and they will attack your new lungs... and often a lung recipient either needs an abortion, miscarrys, or loses her lungs.... not good news. There are some reports out about this.. and if you are interested I can get those to you.... they are worth reading. There have been some women maybe under 10 who have attempted pregnancy after lung tx, and I think about 5 have gone through to the birth. Seems at least 3 of them did fine, the others lost their lungs.... lots to consider.The good news is that I have many friends who adopted children after tx. There was not a problem with that...Let me know if I can be of further help or find those articles for you. luckylungsforjo@aol.comJoanne Schum
 

anonymous

New member
To the women who was recenlt married:I hope that you and your husband take the time and have him tested to see if he is a carrier or not. If he is a carrier, there is a 50% chance that your child will have CF. My fiance and I just went through this.
 

anonymous

New member
Thank you Joanne,I also heard that it is not recommended to get pregnant after tx. If you don't mind me asking how were your sisters PFT's when she got pregnant? Its crazy because when i was younger i never thought that i would have to make these decisions in life. I am going to be 30 in November and its just really a lot to consider.Talk soon!Denise
 

RadChevy

New member
Denise, My sister was 23 at the time she got pregnant the first time. I am only guessing her PFT"s were in the 90's. She had her last baby when she was 36. She definitely had some PFT loss by then. But... this is how you can tell she was in such good health... she had her first IV at the age of 40!!! And she had a lung tx at 46.... so it sort of went fast after that. I wish I could tell you her FEV1 for all 4 pregnanices, but to be honest, both of us never paid attention to it...When I was 21, I realized my lungs were not as good as my sisters and I decided then I would not have children. When I was evaluated for lung tx at the age of 31, and told "no children" I suddenly wanted to take it on... it was short lived, as I knew I would not live through a pregancy at that point.What is your FEV1 now? Do you use O2 for sleep or exercise?Joanne Schumluckylungsforjo@aol.com
 

anonymous

New member
Yes, Women with CF can get pregnant. I am currently 6 months pregnant and I have CF. My husband and I tried to conceive for about 6 months and then it happened. I have had a great pregnancy so far. No complications or meds. Pregnancy boost your horomones and you tend to feel better. My last FEV1 was 67% but I have had part of my lung removed, so it is lower than it should be. My breathing and lung functions are fine. If you have any other questions, please feel free to email me. jeffandalaina@yahoo.comAlaina
 

anonymous

New member
There is not definitive evidence whether most women with CF can get pregnant, however, the general consensus is that yes, they can. There are a few medical issues here. The first is that the mucus in the reproductive tract can be a lot thicker in women with CF than women without, which can make it difficult for the sperm to reach its destination. Some people recommend things like Robitussen cough syrup to thin the mucus, but some say that doesn't work <img src="i/expressions/face-icon-small-tongue.gif" border="0"> As well as this, as other people have said, health factors such as lung function/infections, pancreatic sufficiency, weight, diabetes, as well as overall health, have to be taken into consideration. Some studies have shown that women with CF who fall pregnant have a much better pregnancy success rate if they are generally healthy, and that it appears to have little or no effect on their long-term health.In saying all this, I know of many women with CF who have become pregnant. It all depends on your individual body and your individual circumstances. Discussions with CF specialists, genetic counsellors and high risk ob/gyns are what's needed before the ball is set in motion. It could take days to fall pregnant. It could take months. It could take years, or it may not happen at all.. much like women without CF!- Emma.
 

anonymous

New member
Hi Joanne,My PFT's are usually around 50%. I am going to be 30 in November and i guess its just always on my mind as i love children. I do exercise and am not on O2. I did get sick there in June where i caught a viral infection and for the first time in my life i had to be put on O2. My O2 went down to 87%. Its normally 96-97%. And they couldn't even do PFT's when i got admitted as I couldn't even breathe. That admission sure took an awful lot out of me. I went back to my doctor a week after i got discharged and my PFT's were 46%.It really got me very upset as it felt like my health was going before my eyes. I have been back to the gym again walking on the treadmill for about 20 mins and then using the weight machine. Its amazing how good you feel once you start going again. I still work full time and love my job. So how are you doing these days? I am delighted for you and your sister as you are both doing amazingly well!Talk soon!Denise
 

anonymous

New member
I have CF and I have had 4 kids. They were all born though BEFORE I know I had CF. My diagnosis was not made until my 4th child was 1. However, I think that the pregnancies...specifically the last two (child 3 & 4 are only a year apart...yes, #4 was a surprise!) were hard on me and my lungs. I had chronic lung infections the last few months of both and ended up with bi-lobar pneumonia 5 weeks after my 4th was born. That coincidentally is what started the whole slew of testing that led to the diagnosis. After I ended up in the ER with the pneumonia and they did a CT scan, they found the bronchiectasis (HUH??) It was truly baffling to even find that out! Looking back though, I grew up asthmatic, and had "tummy troubles" as far back as I can remember. Then the sinus problems started in early adulthood and then GERD hit me full force after my second child.Anyway, having a child is certainly not out of the realm of possiblity for some CF'ers. But really, you need to be in good enough health to get through it.GL to you!Jen 34 w/cf
 

kybert

New member
thats really bizarre jen! 3 cheers for the 4th <img src="i/expressions/face-icon-small-wink.gif" border="0"> otherwise you might not have ever been diagnosed properly! are you doing well now?
 

anonymous

New member
I am 34 years old almost 35. I have cf myself. I've been lucky and have only been hospitalized once in my life. I do my treatments and take my pills etc. Try to eat good, take care of myself. I have a 2 year and 5 month old boy. Truly an amazing gift. He is completely healthy and does not have cf himself.<img src="i/expressions/face-icon-small-smile.gif" border="0"> I went off of birth control pills a year and half before I got pregnant. I did end up with gestational diabetes, which may heighten my chances of getting diabetes now. My pregnancy went well. In fact I felt almost better. Maybe because I had even more incentive to take better care of myself. My pfts were also in the 90% I think. Its a hard decision. In my case it turned out. Good Luck!
 

anonymous

New member
Hi there,I am a 31 yr old woman with CF. I also have a 6 yr old daughter. My pfts were in the high 70s to low 80s when I became pregnant. I was off birth control about a year and a half before I finally became pregnant. I didnt do anything special. I did talk to my doctor extensively before I even considered the possibility of having a child. During my pregnancy I was the healthiest I have ever been and felt great! Although toward the last couple of months I became gestational diabetic...which in turn led to full diabetes just 6 months after I had my daughter. My doc induced my labor at 36 1/2 weeks....and I gave birth to a beautiful daughter who is CF free! I know many women with CF who have had children...so it definitely is possible! Good Luck!Dea
 

HollyCatheryn

New member
I am 25 and have CF. My daughter is almost 2 1/2 and she doesn't have CF. I was in good health before I got pregnant and consulted my docs about it. I am currently studying to be a midwife. I had a very healthy pregnancy, with no sign of diabetes, even though I'd had bouts of diabetic reactions in the past (as a result of steroids). I have had no sign of diabetes since either. It took trying for a year before we got pregnant. I have learned that pregnancy is not just related to having cycles. Even if an egg actually becomes fertilized, if your body is over stressed, it may send signals out to your uterus to shut down for a while. Stress, whether physical (like illness or heavy athletic training) or emotional has a direct effect on your fertility. You may or may not have regular cycles, but either can happen without ovulation. If your body struggles regularly to get the oxygen or process calories it needs to function, it is less likely that your body with allow a pregnancy. It will determine that there is not enough oxygen, food, energy, etc. to go around and will hinder the process. The other factor in fertility for many women with CF is the thickness of cervical mucus. You can try taking an expectorant that has guafeneisin in it or taking guafeneisin alone to thin the mucus around your fertile time - which is incidentally not 2 weeks INTO your cycle, but rather 2 weeks before your next period. For a woman on a 4 week cycle this makes no difference, but if you have long or short cycles, this is important to note.Once you become pregnant, it is even more important for a woman with CF to consider carefully her nutrition. Don't waste calories on empty things. Do hydrate - at least 64 oz of water a day. If you crave tons of ice, you are probably anemic and need iron supplements. Also, educate yourself about your pregnant body, your growing child and the birth experience. Be open to alternatives. Women with CF have the special consideration that they may get sick and need treatment. Conventional antibiotics may not be safe for your growing baby, so you need to be as educated BEFORE hand about alternatives (even for some of your routine meds - like Prilosec, which is contraindicated through the 2nd trimester). Chiropracters, naturopaths, homeopaths, midwives and acupuncturists are all good sources in starting your search. Hope a bit of that is helpful.
 

anonymous

New member
Can any of you CF'ers who've had children tell me which medications were safe/not safe to take during pregnancy? My Dr. told me to continue on everything, but she is not too knowledgeable about pregnancy. By the way I'm 10 weeks pregnant and feeling pretty good!
Thanks.
 

anonymous

New member
The only one I had heard of was gentamycin, which is pretty dated, so I don't think you would be on it. It could cause deafness, if I remember right. Just read the pamphlets that come w/ your meds & see what they say. I'm wondering if a pharmacist may be able to give a second opinion? I've asked them on drug interactions, side effects, etc, but this may be a little different?? It doesn't hurt to ask, I guess. Good luck w/ your PG, are you feeling OK so far? That first trimester can sure be tiring, that's for sure!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

HollyCatheryn

New member
I was taken off Prilosec during the first half of my pregnancy but was able to resume use in the latter half. I would contact the La Leche League in your area (call a hospital and ask for the Lactation Consultant). Even though you may not have any plans for breastfeeding your baby, they have access to very current information about medications, procedures, and antibiotics as they relate to both breastfeeding and pregnancy. My LLL group was wonderful in helping me know whether certain meds were safe for my baby on a number of occasions. You may find that certain meds (like Prilosec) are contraindicated for only a specific period of time. The La Leche League had much more up-to-date info than even the pharmacist that usually works with the CF patients at my clinic.
 
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