Our next mommy-to-be CF blogger is Colleen! She is from the blog, *Live*Laugh*Love*Breathe, where you can follow her as starts her career as an elementary school teacher, starts Kalydeco, and goes through a complicated journey of trying to have a baby and IUI. She is 25 years old and 31 weeks pregnant with a little girl!
Everyone that has CF seems to have a very different experience. Share a little about your CF story or how CF effects you.
I was diagnosed with CF at birth due to a meconium blockage. I had surgery to get it fixed and had to stay in the NICU for about a month until I gained my birth weight back since I had lost about a pound from the surgery. Growing up, thankfully I was very healthy. I rarely did treatments and I felt like CF was kind of pushed to the sidelines and not really addressed in my family/home until I was in middle school & high school when the Vest came out. That’s when my parents tried to get me to do more regular treatments, which was not fun at that age!
I finally took charge of my own health when I went away to college and met my now-husband, Tim. I spent the next eight years doing all of my treatments, eating healthier, and exercising to be the best version of myself for him and our future family.
Deciding to have a child when you have CF is a very difficult decision. Please share how you came to the decision to ttc.
For Tim and I, it was never a discussion of if, but more of when. After speaking to my CF doctor in college about getting myself healthier, we decided we’d start trying after we got married.
TTC can be a difficult journey for many women with CF, how was the ttc journey for you?
Long! We stopped all birth control and let nature do its thing after we got married and thought I’d be pregnant within a few months. After several months off birth control, I noticed that my periods were still very irregular, so I talked to my OB who referred me to an infertility specialist. He refused to work with us until we got Tim tested to see if he was a CF carrier, which really made me mad because I felt that was our decision, not his. Either way, we finally got Tim tested and he is not a carrier.
How did you decide you needed intervention? What treatments did you receive?
Shortly after getting Tim tested, we moved three hours south where I got my first teaching job teaching Kindergarten! We started seeing a new fertility doctor, a much nicer and well-informed doctor, referred by a coworker. He did several tests and determined that my Fallopian tubes were filled with an embryo-toxic fluid (hydrosalpinx), that they needed to be removed and that Tim and I were only going to be able to get pregnant through IVF.
I had laproscopic surgery to remove my tubes, but thankfully only one needed to be removed. There was no sign of hydrosalpinx, but a significant amount of scar tissue (most likely from my meconium surgery at birth) around my tubes which damaged the one on my right side. My left tube was perfectly fine which meant we did not have to go through IVF to get pregnant!
After the surgery (February), we tried a few months with Fermara (drug to help me produce mature follicles & ovulate) with no success. Then we did three IUI attempts, and the first one (July) ended in a very early miscarriage, second one (September) didn’t work at all, and the third one (November) worked perfectly…and now I’m 31 weeks pregnant!
What were some of your biggest fears regarding the pregnancy itself? So far, have those fears been warranted?
I was very worried about being able to gain weight during pregnancy since that’s been a difficulty for me my whole life. I was also worried about losing a significant amount of lung function while pregnant. Thankfully, I’ve gained 17lbs so far and my CF doctor and OB are very pleased with that. I have lost just over 10% of my lung function, but surprisingly my lungs have been feeling excellent and I haven't really noticed.
How has your pregnancy gone so far? What have been some of the biggest challenges in your pregnancy so far?
My pregnancy has been absolutely wonderful! I have loved every minute of being pregnant! I didn’t have any morning sickness or nausea which definitely helped me gain weight from the beginning. I really didn’t even feel pregnant until about two weeks ago when I started feeling big and a little uncomfortable. But even now, I still have a good amount of energy and I really can’t complain.
The biggest challenge, for me, has been maintaining my lung function. I was on Kalydeco when I first got pregnant, and my CF doctor and I decided to stop it at 7 weeks, just to be on the safe side. I felt great for about six-seven weeks until I ended up getting sick and my lung function took a dip. My FEV1 went from, low 80s to 69% (lowest I’ve ever seen it), so I started the Kalydeco again (at 14 weeks) and did a round of Tobi, then Cayston which made me feel much, much better. My lung function, as of last week, still hangs in the 70% range, but my CF doctor is happy that I’m maintaining and not losing anymore.
How do you feel your pregnancy is different that a non-cf pregnancy? What are your doctors doing in order to ensure your pregnancy is healthy (more doctor appts, change meds, etc)?
I’m seeing a wonderful pair of High-Risk OBs. I was going every two-four weeks, but now that I’ve hit the 30 week mark, I’m now going weekly until I give birth. They are excellent doctors and are great at taking my CF into account with the pregnancy. They have told me multiple times that I’m the healthiest CF pregnant woman they've seen, and they're so proud of how well I take care of myself.
I’m also monitoring my blood sugars very closely. I was testing four times a day (fasting & 2 hours post meals), but since I was doing so well, they let me cut back to twice a day. I am also going to see my CF doctor more often now, too. I saw her last week, then I’ll see her next month and possibly two weeks after that. This one's a little harder because she’s three hours away, but thankfully I’m on summer break.
What are some of your concerns about mothering and CF?
To be honest, I’m worried that I won’t be alive to see my child(ren) graduate high school, college, get married, meet my grandchildren, etc. This is something that’s in the back of my mind, but it’s also something I use to motivate myself to keep doing my treatments and take care of myself. For the longest time, my motivation to stay healthy was to get pregnant. Now that I’ve achieved that goal, my motivation is to be the best & healthiest version of myself for my husband and our daughter.
I’m sure its going to be tough, especially in the beginning, fitting in treatments with caring for a newborn, but my husband understands the importance of my treatments and I know he’ll help me out whenever I need.
I also don’t want my daughter to be scared of my CF. I wanted her to be well informed and well educated about my disease. I’m sure we’re going to have those difficult questions and discussions, but I plan on being open and honest with her.
If you could give advice to a CF woman who is ttc or is pregnant what would you tell them?
Take care of yourself first! Your (future) child deserves to have the best version of you possible. If you're in the ttc/fertility process, don’t give up! Reach out to anyone of us bloggers, or others in social media, because chances are someone has gone through a very similar experience and will help you not feel so alone. And as hard as it is, be patient... it’ll happen when its supposed to. Of course its easier for me to say that now that I’m pregnant, but trust me, it’ll all work out. And when it does happen, it’ll be SO worth the wait!