Potential Mom to be!! Any Feedback and Advice Wellcom!

[KaylaAnn]

Hi,
My name is Kayla, and I’m 27. I have two copies of the ΔF508 CFTR gene. Fortunately, I have been extremely lucky when it comes to my health. I have never been hospitalized due to my CF, and I have always had great PFTs. I range from 95% to 85%. In the past I’ve struggle with the digestion side of CF, but the last couple of years I haven’t struggled as much. As of right now for medicines I’m only taking Creon 24,000, Advair Diskus, and last month I started Orkambi. I due struggle to gain weight, currently I’m 95 pounds and I’m 5’0 feet tall.
My boyfriend and I have been together for about three years now, and we’re hoping to get married very soon. Of course, not long after we’re married we would love to start trying for a baby. �� I would say that would be in the next two or three years. If I have my way it will be more like two years than three. �� I want to start now getting ready for that day, so I’m ahead of the schedule. Not only is it important to be in the best health possible while pregnant, it’s also important to be in the best health possible anyway.
I was hoping I could get some feedback of your stories about being pregnant; how the pregnancy went, what your health was before and after, what you did to stay healthy, how you prepared for the pregnancy health wise, and whether or not it was difficult to conceive. If it was difficult to conceive, how did you overcome that obstacle? Also, what CF medicines could or couldn’t you take while pregnant? I apologize for all the questions, I want to give ourselves the best chance possible to have a baby. ��
From other articles that I’ve read, I know it’s important to have a BMI of at least 22. Currently I’m at 18.6, so I have some work to do. If you have any tips on gaming weight that would be great as well. My boyfriend is planning on getting genetic testing done before we start trying to make sure he is not a carrier.
Thank you in advance for your feedback and advice. I apologize for a long post.
Kayla

 

[Megan]

Hi, I have had 3 kids. Each time I lost 10% of my lung function that never came back. Two of my pregnancies I was very sick and required IV antibiotics. It is very stressful on the body but worth it. I would do it all over again if I had the choice. My advice is to keep moving. Nothing stressful, since the body is already under a lot of stress but lots of walking and elderly style aerobics. Make sure you have a good doctor that you feel comfortable working with when issues arise as they will. Personally, I used mucinex to thin the mucus to get pregnant. It worked every time. Your nutrition before hand is really important as you wont feel good and wont want to eat for the first few months of pregnancy. You need to be well stocked up on nutritional reserves before getting pregnant. And find some easy to drink shake mixes that are okay to use when pregnant. That's about all I could get down for the first few months of each pregnancy. Anyways, good luck! I wish you the best! My three girls have been the best thing I have ever done. They are older now, 22, 19, and 16.

 

[Meg73]

I know this is a couple months old, I've been off the forums for a while, so sorry for being late. I have had two babies, one in 2015 and the other in 2017. My FEV1 is around 58%, but it's been steady for over 10 years with only a few infections. Both times I got pregnant through IUI. Thick cervical mucus is a common problem for women with CF, so it wasn't too surprising we needed some help. The good news is IUI is much cheaper and easier than IVF.

My pregnancies were both okay. With my first I was really sick the first half, both because of the baby and some nasty colds and ended up on some IV antibiotics, which helped a lot. I also developed a blood clot near my port at 17 weeks (I've since learned that I'm more likely than most to get blood clots, has nothing to do with CF.) After that though, the pregnancy was smooth sailing. My PFTs at 8 months pregnant were just as high as before I got pregnant. Birth and recovery went smoothly, with only a slight drop in PFTs that went back up on their own without any antibiotics.

I was surprised how different my second pregnancy was from my first. I didn't get morning sickness at all, though I still got some colds and had no energy. I think my immune system struggles when I'm pregnant. I had a 10% drop in PFTs about halfway. I did IV antibiotics, which didn't raise them. Luckily, once the baby was born, my PFTs went right back to baseline. I ended up getting induced 2 days shy of 37 weeks due to low amniotic fluid. Despite being early, baby is healthy. Even though I was induced, birth and recovery were just as smooth as my first.

I had gestational diabetes both times. First was diet controlled, but it was so hard to gain weight with the second I requested to be on insulin right away, and for me, that was a very good decision. My baby is 4 months old and it looks like the diabetes is here to stay. I'm not really too bummed about it, I was pre-diabetic before my first pregnancy, so it probably just sped up the inevitable.

Good luck!