20 year old w/CF who wants to know more about pregnancy.

herlife22

New member
I am 20 years old and reading these stories makes me feel very depressed and stuck. I have heard of so many people with CF dying so young, and not being able to have children and whatnot, I don't even know why I would even think about how much I would eventually want to give pregnancy a try. I absolutely love kids and have been very very healthy my whole life. Things have changed a bit this past year, I have been on I.Vs twice but have been able to bring my breathing scores up again. My lungs have been on such a roller coaster. My reason for writing this though is that I wanted to hear about women with CF who have actually had kids, lived and continue to live healthy. Is there such thing? I guess I'm looking for some hope. Please let me know your thoughts. Even if it may not be what I want to hear.
 

herlife22

New member
I am 20 years old and reading these stories makes me feel very depressed and stuck. I have heard of so many people with CF dying so young, and not being able to have children and whatnot, I don't even know why I would even think about how much I would eventually want to give pregnancy a try. I absolutely love kids and have been very very healthy my whole life. Things have changed a bit this past year, I have been on I.Vs twice but have been able to bring my breathing scores up again. My lungs have been on such a roller coaster. My reason for writing this though is that I wanted to hear about women with CF who have actually had kids, lived and continue to live healthy. Is there such thing? I guess I'm looking for some hope. Please let me know your thoughts. Even if it may not be what I want to hear.
 

herlife22

New member
I am 20 years old and reading these stories makes me feel very depressed and stuck. I have heard of so many people with CF dying so young, and not being able to have children and whatnot, I don't even know why I would even think about how much I would eventually want to give pregnancy a try. I absolutely love kids and have been very very healthy my whole life. Things have changed a bit this past year, I have been on I.Vs twice but have been able to bring my breathing scores up again. My lungs have been on such a roller coaster. My reason for writing this though is that I wanted to hear about women with CF who have actually had kids, lived and continue to live healthy. Is there such thing? I guess I'm looking for some hope. Please let me know your thoughts. Even if it may not be what I want to hear.
 

LouLou

New member
Hi, I am happily married, 31 with cf and a 3 year old boy. I entered the pregnancy at 127 lbs (5'3") with an FEV1 of 67%. Last week I was at the doctor and I am 132 lbs and my FEV1 is 65% so roughly the same as 4 years ago! While I do have to do more lung care to maintain my health, I enjoy a good life. I stay home in order to keep my son out of daycare. For me and many other cf moms, it wasn't the pregnancy that was hard but the motherhood. Also many cfers have difficulty gaining sufficient weight during pregnancy which can lead to a more difficult recovery because their body is depleted of its reserves. It's important to gain the proper weight so that the baby is healthy and that you can breastfeed if you choose. I gained 26 lbs. It definitely is possible but you need to be 100% compliant with taking care of yourself and have a good support system in place. Also it is helpful to have an FEV1 of around 70%.

Do you have any specific questions about anything? I'm happy to help :)
 

LouLou

New member
Hi, I am happily married, 31 with cf and a 3 year old boy. I entered the pregnancy at 127 lbs (5'3") with an FEV1 of 67%. Last week I was at the doctor and I am 132 lbs and my FEV1 is 65% so roughly the same as 4 years ago! While I do have to do more lung care to maintain my health, I enjoy a good life. I stay home in order to keep my son out of daycare. For me and many other cf moms, it wasn't the pregnancy that was hard but the motherhood. Also many cfers have difficulty gaining sufficient weight during pregnancy which can lead to a more difficult recovery because their body is depleted of its reserves. It's important to gain the proper weight so that the baby is healthy and that you can breastfeed if you choose. I gained 26 lbs. It definitely is possible but you need to be 100% compliant with taking care of yourself and have a good support system in place. Also it is helpful to have an FEV1 of around 70%.

Do you have any specific questions about anything? I'm happy to help :)
 

LouLou

New member
Hi, I am happily married, 31 with cf and a 3 year old boy. I entered the pregnancy at 127 lbs (5'3") with an FEV1 of 67%. Last week I was at the doctor and I am 132 lbs and my FEV1 is 65% so roughly the same as 4 years ago! While I do have to do more lung care to maintain my health, I enjoy a good life. I stay home in order to keep my son out of daycare. For me and many other cf moms, it wasn't the pregnancy that was hard but the motherhood. Also many cfers have difficulty gaining sufficient weight during pregnancy which can lead to a more difficult recovery because their body is depleted of its reserves. It's important to gain the proper weight so that the baby is healthy and that you can breastfeed if you choose. I gained 26 lbs. It definitely is possible but you need to be 100% compliant with taking care of yourself and have a good support system in place. Also it is helpful to have an FEV1 of around 70%.
<br />
<br />Do you have any specific questions about anything? I'm happy to help :)
 

Mallymookcf

New member
well my pregnancy was great! i did experience pre-term labor (prob. due to my c.f the doctors think) at 29 weeks. They were able to give me meds to slow my pre-term labor symptoms and had me on bed rest until my sweet baby boy was here. he was 9 lbs and 2 oz...and was 3 weeks and 6 days early!! Can u imagine how big he would have been if he went all the way to 40 weeks!! haha. so needless to say i was definitly absorbing my nutrition well for him to grow so great and healthy! I joke and say i should stay pregnant because i was actually healthier pregnant than times before. My pfts were 102, 100, and high 90s all through my pregnancy. once i gave birth (c-section) i went to my c.f doc appt. and my pfts were 109!!! better even after the baby! i am still very healthy. you just have to remember to not only take care of urself when the baby is growing inside you, but also take care of yourself when the baby is born. it is hard to not give all of ur attention 24/7 to ur newborn...but u have to remember you have a disease that needs alot of attention too.. When u r healthy ur baby will benefit!! just make sure u have a supporting family in case u do get hospitalized someone can watch the baby off and on while ur hubby works etc...
hope that helps u think positive about pregnancy and c.f.! I would do all over again..it is the best thing i have ever done! he is 17 months old now..its a blast!
God Bless
mallory
 

Mallymookcf

New member
well my pregnancy was great! i did experience pre-term labor (prob. due to my c.f the doctors think) at 29 weeks. They were able to give me meds to slow my pre-term labor symptoms and had me on bed rest until my sweet baby boy was here. he was 9 lbs and 2 oz...and was 3 weeks and 6 days early!! Can u imagine how big he would have been if he went all the way to 40 weeks!! haha. so needless to say i was definitly absorbing my nutrition well for him to grow so great and healthy! I joke and say i should stay pregnant because i was actually healthier pregnant than times before. My pfts were 102, 100, and high 90s all through my pregnancy. once i gave birth (c-section) i went to my c.f doc appt. and my pfts were 109!!! better even after the baby! i am still very healthy. you just have to remember to not only take care of urself when the baby is growing inside you, but also take care of yourself when the baby is born. it is hard to not give all of ur attention 24/7 to ur newborn...but u have to remember you have a disease that needs alot of attention too.. When u r healthy ur baby will benefit!! just make sure u have a supporting family in case u do get hospitalized someone can watch the baby off and on while ur hubby works etc...
hope that helps u think positive about pregnancy and c.f.! I would do all over again..it is the best thing i have ever done! he is 17 months old now..its a blast!
God Bless
mallory
 

Mallymookcf

New member
well my pregnancy was great! i did experience pre-term labor (prob. due to my c.f the doctors think) at 29 weeks. They were able to give me meds to slow my pre-term labor symptoms and had me on bed rest until my sweet baby boy was here. he was 9 lbs and 2 oz...and was 3 weeks and 6 days early!! Can u imagine how big he would have been if he went all the way to 40 weeks!! haha. so needless to say i was definitly absorbing my nutrition well for him to grow so great and healthy! I joke and say i should stay pregnant because i was actually healthier pregnant than times before. My pfts were 102, 100, and high 90s all through my pregnancy. once i gave birth (c-section) i went to my c.f doc appt. and my pfts were 109!!! better even after the baby! i am still very healthy. you just have to remember to not only take care of urself when the baby is growing inside you, but also take care of yourself when the baby is born. it is hard to not give all of ur attention 24/7 to ur newborn...but u have to remember you have a disease that needs alot of attention too.. When u r healthy ur baby will benefit!! just make sure u have a supporting family in case u do get hospitalized someone can watch the baby off and on while ur hubby works etc...
<br />hope that helps u think positive about pregnancy and c.f.! I would do all over again..it is the best thing i have ever done! he is 17 months old now..its a blast!
<br />God Bless
<br />mallory
 

Kristen

New member
Many women with CF are having children now. I think the key is to be healthy before you get pregnant. I am currently 9 months pregnant (due in 4 days) and my pregnancy has been great and the baby is growing perfectly. I have been blessed with great health for a CFer my entire life and went into the pregnancy with an FEV1 of 112%. At my last CF appointment at 35 weeks pregnant my FEV1 was 115%. I am also pancreatic sufficient and gaining weight has not been an issue for me (I've gained over 40 lbs).

The only CF related issues I've had during pregnancy is a sinus infection that required 10 days of antibiotics, and having to use FMLA to cut back on hours at work - around 25 weeks I just about had a nervous breakdown because I was overwhelmed by trying to work full time, take care of myself, and deal with the added demands of the pregnancy (needing more sleep/rest and having to go to the doctor more often). I don't think my pregnancy would have gone as well if I hadn't cut back on hours at work so I could have more time for REST (I've been working about 25-32 hours a week).

The next test for me will be to see how things go after the baby is born - Like others said, I've heard that can be the hardest part because you are so busy taking care of the little one that it's easy to neglect yourself.

Oh, and one other thing you may not know is that CF itself can sometimes cause infertility in women because it can make our cervical mucus too thick for the sperm to swim through - it's not nearly as common as it is in men, but there are several of us on here that needed the help of a fertility doctor to get pregnant. There are also many women on here that got pregnant on their own, so that's sometime you won't really know until the time comes and you are trying to conceive.
 

Kristen

New member
Many women with CF are having children now. I think the key is to be healthy before you get pregnant. I am currently 9 months pregnant (due in 4 days) and my pregnancy has been great and the baby is growing perfectly. I have been blessed with great health for a CFer my entire life and went into the pregnancy with an FEV1 of 112%. At my last CF appointment at 35 weeks pregnant my FEV1 was 115%. I am also pancreatic sufficient and gaining weight has not been an issue for me (I've gained over 40 lbs).

The only CF related issues I've had during pregnancy is a sinus infection that required 10 days of antibiotics, and having to use FMLA to cut back on hours at work - around 25 weeks I just about had a nervous breakdown because I was overwhelmed by trying to work full time, take care of myself, and deal with the added demands of the pregnancy (needing more sleep/rest and having to go to the doctor more often). I don't think my pregnancy would have gone as well if I hadn't cut back on hours at work so I could have more time for REST (I've been working about 25-32 hours a week).

The next test for me will be to see how things go after the baby is born - Like others said, I've heard that can be the hardest part because you are so busy taking care of the little one that it's easy to neglect yourself.

Oh, and one other thing you may not know is that CF itself can sometimes cause infertility in women because it can make our cervical mucus too thick for the sperm to swim through - it's not nearly as common as it is in men, but there are several of us on here that needed the help of a fertility doctor to get pregnant. There are also many women on here that got pregnant on their own, so that's sometime you won't really know until the time comes and you are trying to conceive.
 

Kristen

New member
Many women with CF are having children now. I think the key is to be healthy before you get pregnant. I am currently 9 months pregnant (due in 4 days) and my pregnancy has been great and the baby is growing perfectly. I have been blessed with great health for a CFer my entire life and went into the pregnancy with an FEV1 of 112%. At my last CF appointment at 35 weeks pregnant my FEV1 was 115%. I am also pancreatic sufficient and gaining weight has not been an issue for me (I've gained over 40 lbs).
<br />
<br />The only CF related issues I've had during pregnancy is a sinus infection that required 10 days of antibiotics, and having to use FMLA to cut back on hours at work - around 25 weeks I just about had a nervous breakdown because I was overwhelmed by trying to work full time, take care of myself, and deal with the added demands of the pregnancy (needing more sleep/rest and having to go to the doctor more often). I don't think my pregnancy would have gone as well if I hadn't cut back on hours at work so I could have more time for REST (I've been working about 25-32 hours a week).
<br />
<br />The next test for me will be to see how things go after the baby is born - Like others said, I've heard that can be the hardest part because you are so busy taking care of the little one that it's easy to neglect yourself.
<br />
<br />Oh, and one other thing you may not know is that CF itself can sometimes cause infertility in women because it can make our cervical mucus too thick for the sperm to swim through - it's not nearly as common as it is in men, but there are several of us on here that needed the help of a fertility doctor to get pregnant. There are also many women on here that got pregnant on their own, so that's sometime you won't really know until the time comes and you are trying to conceive.
 

mom2lillian

New member
I'm 30 year old mother to a 3.5 year old daughter. I agree mothering is WAY harder than gestating and I can say that even having had a very uncomfortable pregnancy. My lung functions were around mid 90's y most recent FEV1 is 114% I have become very compliant and pro-active which has worked wonders. Its easier to do these things knowing I have to stay healthy for my family.
 

mom2lillian

New member
I'm 30 year old mother to a 3.5 year old daughter. I agree mothering is WAY harder than gestating and I can say that even having had a very uncomfortable pregnancy. My lung functions were around mid 90's y most recent FEV1 is 114% I have become very compliant and pro-active which has worked wonders. Its easier to do these things knowing I have to stay healthy for my family.
 

mom2lillian

New member
I'm 30 year old mother to a 3.5 year old daughter. I agree mothering is WAY harder than gestating and I can say that even having had a very uncomfortable pregnancy. My lung functions were around mid 90's y most recent FEV1 is 114% I have become very compliant and pro-active which has worked wonders. Its easier to do these things knowing I have to stay healthy for my family.
 
W

welshwitch

Guest
Hey ladies,

just want to chime in--thanks for your feedback! As a 30 year old CFer, this is great to hear! I am going to continue to be compliant and keep my FEV1 in the 100s if and when I ever become a mommy! You are all inspirations to me.
 
W

welshwitch

Guest
Hey ladies,

just want to chime in--thanks for your feedback! As a 30 year old CFer, this is great to hear! I am going to continue to be compliant and keep my FEV1 in the 100s if and when I ever become a mommy! You are all inspirations to me.
 
W

welshwitch

Guest
Hey ladies,
<br />
<br />just want to chime in--thanks for your feedback! As a 30 year old CFer, this is great to hear! I am going to continue to be compliant and keep my FEV1 in the 100s if and when I ever become a mommy! You are all inspirations to me.
 

mamaScarlett

Active member
I am 28, dx at 1 yr old, and have a 3 yr old. I was also one of the ones told my whole life that I'd never have children. But that changed. My fev1 was 75% pre-pregnancy, dipped down during and after, and has sinced risen back up to my pre-preg #s. (with tons of hard work!)

I think you need to stop reading all the 'sad' stories and start reading the good ones. Bc theres plenty of them. Of course we know what Cf does, its not a mystery. But for me, I've learned about myself that dwelling on the 'what ifs' of life only bring me down. That type of thinking just brings misery to my life-maybe some can handle it, but I know that I can't.
So I chose to dwell on the moms with Cf that are making it, like me. And I chose to live-planning on my future, planning on being here. Not the other way around.
Its not denial, its a choice. Yes, things can go any way, but whether I worry for the next 20 yrs or not, its not going to make any difference. So I'd rather live my life free of that.

When it comes to being a mom with Cf, whether you give birth or adopt-its all about COMPLIANCE and scheduling. Thats the only way you can make a success of it.
Keep reading the positive stories, and whether you have children or not, you'll be the best at whatever you do.
 

mamaScarlett

Active member
I am 28, dx at 1 yr old, and have a 3 yr old. I was also one of the ones told my whole life that I'd never have children. But that changed. My fev1 was 75% pre-pregnancy, dipped down during and after, and has sinced risen back up to my pre-preg #s. (with tons of hard work!)

I think you need to stop reading all the 'sad' stories and start reading the good ones. Bc theres plenty of them. Of course we know what Cf does, its not a mystery. But for me, I've learned about myself that dwelling on the 'what ifs' of life only bring me down. That type of thinking just brings misery to my life-maybe some can handle it, but I know that I can't.
So I chose to dwell on the moms with Cf that are making it, like me. And I chose to live-planning on my future, planning on being here. Not the other way around.
Its not denial, its a choice. Yes, things can go any way, but whether I worry for the next 20 yrs or not, its not going to make any difference. So I'd rather live my life free of that.

When it comes to being a mom with Cf, whether you give birth or adopt-its all about COMPLIANCE and scheduling. Thats the only way you can make a success of it.
Keep reading the positive stories, and whether you have children or not, you'll be the best at whatever you do.
 
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