Wanting to conceive

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cheerfulpuppies

Member
My name is Dana, I am 32, diagnosed at 13 months. I just got married in September. My husband and I have been together almost 6 years and we are wanting to start a family. I am relatively healthy lung function wise but my pancrease does not function very well. Also I have CFRD but is controlled by diet so far. My worse FEV has been 92% My CF doctor has not been too supportive of my decision to not use birth control for the past 6 years. He keeps saying "well I guess you want to get pregnant than?" He even went as far as to make a remark about me not using the birth control to a medical student as if it was more important that I didn't take birth control than it was to treat my CF. It was several years before I could brush him off and not let it bother me. I also had my thyroid removed last year due to a simple goiter. And that doctor suggested adoption due to the CF.

The reason for this blog/question is has anyone else encountered this with their CF doctors? What did you make of it and did you decide to have a baby anyways? I understand my chances of conceiving are greatly reduced and pregnancy is a major strain on the body but what is so wrong with wanting to have a baby. Also does any one have any advice to help conceive? I am an Nurse, i know about the menstral cycle and I know people have used mucinex to thin the mucus but i dont know how much to take, how long to take it for, or if there are any other over the counter things that doctors have recommended.
 
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ep1713

New member
Hi!

My CF doctors (one in particular) were not thrilled with the idea of me having a baby. I'm relatively mild so far too (FEV1 in the high 90s) and take really good care of myself. When I questioned him specifically, he said that being he was my doctor his job was to recommend that I avoid things that could have a negative impact on my health. I also know that past cfers who have had babies at my clinic have not done well.

After basically hearing his perspective, I explained to him that this was something I'd always dreamed of and that I would not become someone who quit taking care of myself because of the stresses of a newborn. I was already on top of my treatments before having a baby, and I knew I would make it work to stay that way after Sam was born.

I will be really honest in that I had a really tough pregnancy. I had gestational/cf related diabetes starting at 9 weeks, dropped lots of weight, and had to do 2 long rounds of IVs. Since having Sam, I've done really well though. My PFTs are just as good, if not better at times. My diabetes has gone away for now. And my weight is back to my normal. I really worked hard to get back to my old self :)

For me to have Sam, mucinex didn't work. I did 6 IUIs with various forms of fertility drugs. I would 100% do it all over again. Before having Sam, I made a pledge with my family and doctors that I would only have one child. While I would love to have another, and sometimes it's hard to accept, I know deep down that it is the right decision for me.

Good luck! If you have any questions, I'd be happy to try and help!
 
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jessykt

Guest
When I got pregnant 13 years ago, my doctor and father both pushed for me to abort. I went through the pregnancy and delivered 7 weeks early. My health took a major hit, but I will never regret it! I now have an almost-teen age boy.

My husband and I have been trying to conceive for about 7 years. Each time I go to clinic they ask if I'm on birth control and I say no. After the incident with the one doctor pushing abortion, I dropped him. I still have to see him every once in awhile if he's the attending at the hospital. He will ask every time, "You have just one?" "Yes." "oh, well that's good." Ticks me off.

No doctor I've been to, cf, obgyn, psych, have wanted me to get pregnant. It's a choice that you'll have to make. We've decided not to turn to science to conceive, I figure what will be, will be. Best of luck to you though!!
 
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Hardak

New member
I can see that being a hard choice.. and you gotta be damned sure the man you've married could handle your child after you have passed. I'm not trying to piss all over the idea, just saying it could happen. A close friend of mine loser her sister (sister was 35ish). She had had a child and after that her health just snow balled down hill on her. If you are going to really think about this I would also have you husband screened for all known CF genes. A baby with CF is at EXTREMELY high risk just being near a parent that has CF. You could potently cut your childs life in half if not more so if they had CF. Being a male I don't have the "my body can't take the stress" subject, but I still have the responsibility that would come with being a parent. You really want kids around, I would highly suggest adoption, there are alot of kids out there that need a good home.

Keith
 
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Kristen

New member
I am a bit surprised by your doctor's lack of support. The research I have read has shown that, if a woman with CF is healthy going into a pregnancy, she will usually do fine during the pregnancy. The harder part is after the baby arrives - it is hard to juggle taking care of a newborn and keeping up with your treatments. But it is definitely possible because I know many women who do it!

Your FEV1 seems high enough that you would do well lung-wise, unless there is something else? Is he worried about your CFRD or pancreas issues? Or is it just because he's seen what has happened to the other women at your clinic when they have had a baby? It is true that, if we want to do what's best for our health, having children would not be on the list of things to do because it's risky. But so are a lot of things and you have to decide if the benefit outweighs the risk, and the risk of having a child is different for every woman with CF. Could you get a second opinion?

My doctor has been very supportive of me having a baby. My health is very, very good for a woman with CF, and I went through pregnancy without a hitch. I did have one hiccup during the first year where I had to get my first PICC line, but I'm not sure if that had anything to do with having a baby because I didn't catch a bug from her and it was after the sleepless nights had ended. But those two weeks when I was on the PICC and taking care of her were HARD! I had no support and I thought I was going to loose my mind. But we all survived.

I recently told my doctor that we were thinking of having another and he just said, "The most important thing is that you have a good support system after the baby arrives." We've learned a lot the first time around now have a plan in place in case I get sick again. I think it is so important that we women with CF know what we are going to do if things go downhill - can family pitch in? Can you hire a nanny for a few days? Do you have friends who can help? Can your husband take time off work? Things like that.

The other thing I wanted to add was that, for me, I felt that I had to quit my job in order to be able to have the time to take care of my daughter and myself. Everyone is different, but, for me, I really believe it has made a huge difference in being able to stay healthy (and SANE) with all the responsibilities I have. I'm actually able to take better care of myself now than I was pre-pregnancy (and working full time), because I have more time, and my lung function has been going UP! Having a child has been a HUGE motivation for me to stay healthy! More than I ever could have imagined it would be.

As far as getting pregnancy, I took the "12 hour extended release" form of mucinex but it didn't work. You can also just take the regular (and cheaper) kind as recommended on the bottle (I think it's every four hours), but I knew I'd forget to take it that often, so I took the 12-hour version. We tried on our own for 8 cycles before starting IUI. I ended up doing IUI to get pregnant. We did two IUIs with no fertility drugs, which didn't work. Then we did two IUIs with clomid, both of which work but the first one ended in a miscarriage. The second one ended with my sweet daughter.

Best of luck to you. It really is a tough decision (I have been AGONIZING over having a second) and there is no "one size fits all" answer because everyone's CF story is so different, but I hope this helped some.
 
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scanboyd

Member
Having a child is a very personal decision between hubby and wife. Hope it all works out for you cheerfulpuppies.
For us it was a easy decision, did not have a lot of choices 35 yrs. ago. Any way God had a plan for us and we have been more than blessed with the adoption of our two children some 35 yrs. ago.
Good Lucky!!
 
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InhalingHope

New member
I am 27 years old and 14 weeks pregnant. I too am surprised at the lack of support from your doctor. I know that my doctor considered a lot of other aspects besides PFTs when deciding to support me in a pregnancy. I was told PFT stability (which it sounds like you have), nutritional health (vitamin levels at the appropriate levels), BMI, ability to gain and maintain weight, frequency of respiratory infections, and of course compliance are all huge factors in pregnancy success. I would ask your doctor what his specific concerns are. I know my doctor would prefer that I didn't have kids because there is always some risk to pregnancy, but he was more than willing to support my decision.

As far as getting pregnant I used Mucinex, but I was very lucky and got pregnant quickly so I am not 100% sure it was Mucinex or luck. I did notice a big difference in my cervical mucus when taking Mucinex though. Best of luck!
 
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tesorotiffa

New member
I have an FEV1 of 66% and my doctor hasn't tried to persuade me NOT to have children. I'm not trying to get pregnant, but I've never been one to take birth control (it makes me bleed constantly), but she knows that it is a topic up in the air between my husband and I. I think she believes I can make an intelligent decision.
 
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serendipity730

New member
Hi all,

I am also surpised that your doctor has been unsupportive. Generally, FEV1 over 60% and good over all health (weight, etc) is considered a good predictor. However, some CF docs can be very paternal with their patients. My previous doctor was certainly not in favor of ANY woman with CF having a pregnancy. And, not to play the gender card, but this is VERY difficult for many men to understand.

My husband and I have been trying to conceive for over a year with no success.

I am surprised that no one else has responded to Keith's comment. While he makes some decent points, they are callously presented. I think I speak for 99% of women with CF who want to try to have biological children when I say, we know that we might not live to see our children graduate college, get married, or have their own children. Saying "you gotta be damned sure the man you've married could handle your child after you have passed" is, frankly, offensive. I hope that all of my fellow CFers, male AND female, have chosen supportive mates.

I know of a few women with CF who have children with CF. While I, personally, would like to avoid this situation, saying that these mothers are cutting their child's life expectancy in halfis simply inflammatory.

Also, a lot of ppl who haven't coped with infertility (or making the decision to or not to have biological children) think that adoption is an easy, quick process. This is not the case. While I think that adoption is a great way to become a parent, saying someone can "just adopt" is overly simplistic. We've investigated this option, and it is often expensive. In my case, my husband and I are licensed foster parents, and hoped to become parents that way, but have had few opportunities to foster.

Good luck to you, Dana. There is actually a fair amount of literature out there about women with CF & pregnancy. If you'd like to 'arm' yourself with some of this information, I'd be happy to point you in the right direction.
 
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mamaScarlett

Active member
Hello and welcome,I rarely ever try to question a doctors recommendations. In this case, it sounds like your doctor has very out of date information. Now, I don't know how stable your cfrd is, or how you handle exacerbations, or IVs or alot of other things. You and your doctor know that. But based on numbers and what you're saying, you seem-again, number wise-to be healthy.
Its lots of work being a mom with cf, but the days I don't want to do my therapy I have really GREAT motivation now!If you aren't compliant now, work it into your life before kids.
Your doctors job is to ensure your long life-that why you see him. Could kids shorten that? Thats a tough question. The days of most well planned (healthy) cf moms not making it are virtually gone. There are SO many factors besides children that could shorten your life. But doctors have to factor in quality of life, and I'm blessed to have a doctor that does that. She looks at the numbers, the facts, AND my emotional health, spiritual health, financial situation, marital situation, family support, everything.
 
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cheerfulpuppies

Member
Thanks for everyone's replies. As far as my health and tune ups go. I have not been hospitalized since I was 13 months old. My last pft put me at 104% of the reference #'s. My cfrd is controlled by diet despite the fact that my doctor didn't want me to restrict anything in my diet and has since tried to get me to start insulin even though I don't need it yet because he read an article that lung function is better for those using insulin. He tries to knit pick all the vitamins and few non cf meds I take. And as far as exhacerbations, my biggest problem is my sinus infections he refuses to give me antibiotics for and I have never needed IV antibiotics yet. Instead he is upset I see a different doctor who is willing to treat my sinus infections. Well we have tried a few times but no luck yet. In fact I just had an office visit and he asked if I was pregnant yet, I said no, he asked if I was frustrated. He thinks because I have used the "rhythm method" to avoid the bad times as a birth control method for the past 6 years, I have been actually trying to get pregnant.
 
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mamaScarlett

Active member
Even if your doctor is a good one, if the two of you are not on the same page I strongly suggest you seek care elsewhere.
Pregnancy and life post pregnancy will have many ups and downs. You need a strong shoulder to rely on in your Cf care team and above all you need experienced care. My cf doctor has had many pregnancy patients. Some with 1 child, 2, 3-she even has a patient with 5 children. If I was scared during my pregnancy, or concerned about anything, I could call her and bc she's so experienced with pregnant Cfers...she could really put my fears at ease, or even look for signs of trouble that I wouldn't notice. The point is I TRUSTED her.
 
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imported_Momto2

New member
It's your choice and your husbands, no one else. Sounds like you are in very good shape and a good candidate. Keep in mind that its not just the pregnancy, but parenting a baby/toddler can be completely exhausting. Although we adopted (my stats at the time were only slightly worse than yours) my health took a big hit, especially with #2 because she was a newborn (as opposed to our older daughter who was a year old when she came home). By the time our youngest was 4 years old, I had dropped my FEV in the low 50's. The best advice I can give- make time for yourself, for treatments, sleep, eating well, exercise. Too often I put our daughters minor needs first, I should have balanced better OR asked for more help from willing family. Sometimes its hard to have long-term vision when a little one is involved.

I would also highly suggest a new doc. Life is hard enough, you need your CF doc on your side. You shouldnt have to hide things from him, that's a bit worrisome. Good luck with it all- eyes wide open, educate yourself, prepare, support system, go for it!
 
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mamaScarlett

Active member
Originally posted by: Momto2 It's your choice and your husbands, no one else. Sounds like you are in very good shape and a good candidate. Keep in mind that its not just the pregnancy, but parenting a baby/toddler can be completely exhausting. Although we adopted (my stats at the time were only slightly worse than yours) my health took a big hit, especially with #2 because she was a newborn (as opposed to our older daughter who was a year old when she came home). By the time our youngest was 4 years old, I had dropped my FEV in the low 50's. The best advice I can give- make time for yourself, for treatments, sleep, eating well, exercise. Too often I put our daughters minor needs first, I should have balanced better OR asked for more help from willing family. Sometimes its hard to have long-term vision when a little one is involved. I would also highly suggest a new doc. Life is hard enough, you need your CF doc on your side. You shouldnt have to hide things from him, that's a bit worrisome. Good luck with it all- eyes wide open, educate yourself, prepare, support system, go for it!

Perfectly put. Agree 100%!
 
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Haylih

New member
Hi Dana!
I think that it's great that you still want to have a child, despite what your doctor says, especially when you have such FEV1 scores! I'm getting married in June and have been talking to my doctors about pregnancy, and overall they have been extremely supportive.
As for birth control, I personally am tired of taking pills, and I really don't want to be putting extra chemicals in my body, so my future husband and I are planning on using a method of Natural Family Planning as a way to avoid pregnancy, but also as a way to ensure achieving pregnancy. The method we're using is called the Creighton Model which allows the woman to know exactly when she is fertile or infertile. The method doesn't only look at the menstrual cycle of the woman, but also the mucus cycle of the cervix, which is really what allows the woman to know if she is fertile or not. You should look into it! I thought that this would be extremely helpful in allowing my future husband and I to achieve pregnancy, because as you mentioned in your post, it may be difficult. I really encourage you, and anyone else with CF who is either trying to achieve or avoid pregnancy to look into it! It's more effective than birth control (99% perfect use, 96.8% actual use) and it's much safer for your body, considering you aren't adding anything foreign, just looking at the natural cycle of the woman's cervical mucous.
Here's a website if you'd like to look into it further, www.creightonmodel.com
I hope this helps! And you know what, sometimes the doc doesn't always know what's best, sometimes you just have to follow your heart :)
 
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Megs

New member
Hi all,
I just found this site and am glad that I did. I am a 26-year-old with CF (homozygous deltaF508). My husband and I have been trying to conceive for almost a year and a half now with no luck. We did our first round of IUI with clomid last month with no success. Here's to round 2...! On a similar note, I have had nothing but support from my doctors, and I am sad to hear that others have not had that experience. It is a hard enough time to first of all decide to conceive (despite all the CF life-expectancy stats, preconceived ideas of others, etc, etc...), and then to have difficulty conceiving, and to not even have the support from your medical team.
<a href="http://www.cysticfibrosis.com/profile/index.cfm/serendipity730">serendipity730</a>: well-said. I would actually be interested in some of the CF and pregnancy literature you might have. Thanks!Also, I've noticed on here that most of you have tried mucinex. This is the first I have heard of this. Could somebody please explain how it works? Thanks!Take care everyone,
Megan
 
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