Sunday, November 11, 2012

Guest Blogger- Cindy

I am pleased to introduce my first CF mommy blogger, Cindy! Cindy is from the popular blog, being cindy {baldwin}. She is also the creator of the CF Blogroll which features dozens of CF bloggers. Cindy is a 24 year old cyster who is currently 22 weeks pregnant with her daughter! She has overcome so many challenges to become a mother and I am thrilled that her dream of being a mommy will come true this spring!

Everyone that has CF seems to have a very different experience. Share a little but about your CF story or how CF effects you.
I was diagnosed with CF at 6 months old, after two months of being very sick and nearly dying from malnutrition caused by an electrolyte imbalance. After my first two years of life, though, my health leveled out and I was a really healthy kid. I didn't start really experiencing CF lung issues until I hit high school and started losing sleep! Winters became a tough time for me, and I always seemed to be sick with one thing or another. I would use oral antibiotics frequently and usually have one admission a year for a "tune-up." My junior year of high school, I got mono and was very sick with that for more than a year (we didn't even get the diagnosis of mono for ten months). I ended up with fibromyalgia and chronic fatigue syndrome as a result of the mono, so I have very few energy reserves and have to be very careful to get enough sleep and not overexert or else I end up immediately sick. My CF has been very unstable for the last few years, and I've been in and out of the hospital frequently, but I've been incredibly blessed this year to start Kalydeco which has made an ENORMOUS difference in my life—including giving me the boost I needed to finally get pregnant!
Deciding to have a child when you have CF is a very difficult decision. Please share how you came to the decision to try to conceive.
I came from a big family (the oldest of six) and always wanted LOTS of kids. It wasn't until I was a teenager that I learned that CF pregnancy and motherhood can be difficult and even life-threatening. It was pretty crushing news at the time, since I used to tell everyone I wanted ten kids, including a set of twins! I eventually came to terms with the fact that I wouldn't be able to have the large family I wanted, but I still hoped to be able to have at least one or two kids. When I started dating my husband and we got more serious, we had a lot of conversations about the "serious" ramifications of CF, including having kids. He is also from a family of six, and also wanted lots of kids. For the first few years of our marriage my health was unstable enough that we weren't sure pursuing pregnancy was a good idea, but we did eventually decide that we felt comfortable with it. However, our plan has always been to only have one pregnancy. With the way that Kalydeco is changing my life, we've started floating the idea of a possible later pregnancy, but that is still a huge "if". If we decide not to try another pregnancy when our little girl is a few years old, we will adopt.
TTC can be a difficult journey for many CF women as I believe it was for you, tell us about your ttc journey.
Tough!!! We waited for two and a half years for my health to stabilize before we started TTC, which was really hard in and of itself, and made it even harder when it became clear that I had serious fertility problems. I always knew I had a high chance of fertility issues, since I never had regular periods before I got married. About 6 months into our TTC journey, my hormone levels were tested and they were so low they were almost in the range of menopause—at age 23! It took us about 18 months to get pregnant.
If you needed fertility treatments please tell us a little about the process. How did you decide you needed intervention? What treatments did you receive?
I was sure that I would need fertility treatment, and actually had talked about it a lot with my doctor at the time and even set up a time to begin Clomid. However, my husband and I ended up moving very unexpectedly and I wasn't able to go through with the Clomid because of insurance changes. Ultimately, I was able to get pregnant after three months on Kalydeco. My doctors and I have theorized that the medication removed enough of the CF stress on my body that my hormone levels were able to normalize a little (however, I still needed supplemental progesterone to maintain the pregnancy).
What were some of your biggest fears regarding the pregnancy itself? So far have those fears been warranted?
My #1 fear was that pregnancy would take a toll on my health that I would never be able to recover from. I've always felt very strongly called to be a mother, but my priority has always been to be able to be around for my child(ren) as long as I possibly can. If my husband and I had not ultimately felt that that would be possible even with the physical demands of pregnancy, we would have adopted instead. However, this pregnancy has gone a million times better than I ever expected! So far, my lung function has actually gone UP a little bit (we'll see where it is now in another two weeks!), and I've been perfectly healthy. Because of the way my body handles stress (not well), I'm certain that for me, the effortlessness of this pregnancy has been because of Kalydeco. Now I am just hoping that I can make it through cold and flu season without getting anything—that will be the real test!
How do you feel your pregnancy is different than a non-CF pregnancy?
The biggest thing is that I have to be so careful all the time. Just like in regular CF life, I have to be much more careful about the germs I'm exposed to, especially as we head into cold and flu season. Also, because I already had chronic fatigue and existing energy issues, I've had to be very careful to make sure that I get even more sleep and rest than normal (a pretty ridiculous amount!). Especially in the first trimester, I've had even fewer reserves than normal, and have run a lot of low-grade fevers and so forth when I've pushed myself too hard. Also, for me at least, CF complicates some of the normal issues of pregnancy. For instance, I have a lot of CF digestive & intestinal problems, which have been exacerbated by pregnancy. I also had GERD previous to pregnancy, so as you can imagine, dealing with reflux has been even more of a problem as the baby gets bigger and bigger!
What are your doctors doing in order to ensure your pregnancy is healthy (more regular appointments, change meds, etc)?
My CF doctors have up to this point still been seeing me every 3 months. However, after my next appointment (in 2 weeks) we'll switch to every 2 months, just to make sure that I'm well monitored in the last stages of pregnancy. They also have encouraged me to come in any time I feel like I need it. In addition, I'm being monitored closely by a regular OB/Gyn and a team of perinatologists. From now on, I will have monthly visits with both and monthly ultrasounds. Toward the end of the pregnancy, my visits will increase and I'll have weekly or bi-weekly NSTs to make sure everything is going well with baby.
What are some of your concerns about mothering and CF?
Because I know that I tend to get run down very easily and get sick whenever I lose sleep or push myself too hard, I'm very nervous about the first few months! I'm trying to put as many things in place during pregnancy as I can to make those newborn months go smoothly—for instance, in the months before the baby comes I plan to cook and freeze a lot of meals ahead of time so that I don't have to worry about cooking for awhile when the baby is first here. Also, although I hope to breastfeed some, we will be supplementing with formula so that I am not so overtaxed and so that my husband can help with night feedings. I know these things will be important for me, personally, because of the huge link in my CF between sleep loss and getting sick.
If you could give advice to a CF women you is ttc or is pregnant what would you tell them?
Do your research! I am the kind of person who likes to know what is going on with everything, so I did a lot of research on both fertility issues and pregnancy. Research during the TTC period helped me to understand very quickly what was going on with my body, and to be able to assist my doctor in figuring out what the best way to address the situation was. Because my fertility problems were so complicated, it would have taken a LOT more time and frustration to rely only on the standard doctor's office tests. Research before and during pregnancy has helped me to be forewarned about a lot of issues I've faced and know the best ways to deal with them, as well as in preparing for childbirth and the first few months with a newborn.

Cindy gave birth to Kate on March 25, 2013 (a week late!). She was 9lbs 8oz and 21 inches long!


  1. I'm SO excited for your series, IH!!! In fact, if you have a label for it or are going to put links to them somewhere on your website, I'd love to put a link on my blog sometime to your series. I think it is SO much needed! I know I felt like you - when I first started trying to find info on CF pregnancy, the ONLY stories I could find were either people who had essentially no CF involvement (had never been hospitalized, lived pretty normal lives etc) or people who ended up near death because of their pregnancy... made it seem like a pretty scary prospect! It's been so helpful for me to get to "know" CF moms who really range the gamut of experiences.

    1. Thanks for being my guinea pig and going first ;) I will be adding a tab at he top of my blog so it would be wonderful once that is done if you could link it to your blog.

      I agree that all of the CF stories I heard in the past were from people that had no CF involvement, but as we both know that there are cysters of all walks having families of their own.

  2. I LOVED this post.......even a fibro can say that!!! As you have read about our fertility journey we connect with many others who are going through this living nightmare.

    Kalydeco has changed your life for the good!! I am so glad that there is a drug out there and your insurance is covering it I presume. These pills are REALLY making a difference in our community and it is awesome to read stories like this cyster.

    As far as pregnancy and all I think the only thing I can say is plan for the unexpected. I love that oxymoron. Speaking from our own labor experience and pregnancy,you do not have control over things.

    I wish there was a way to "bank" sleep because let me tell the first two weeks when Alayna was born was something I will never forget. It was a major adjustment for our sleep pattern. You heard it before when baby sleeps you sleep and that is no joke.

    On the breastfeeding topic it is really really exhausting well I only know from our own experience. There are things that will drive you waiting for the milk to come in, is the baby eating enough, is this the proper position for the baby, should I give my baby a pacifier or bottle etc. Oh one suggestion is buy a good quality pump. I know Maria is glad she bought a good one.

    I think its a great idea to supplement with formula just make sure the hospital is aware of this before the lactation nazi's come out because trust me they will. Your health is very important and even more so for your daughter. You will want to make a lifetime of memories so if you need to sacrifice some feedings with formula in order to maintain your health I say go for it!!!!

    CONGRATULATIONS again Cindy!!!

    1. Great to here a little about parenthood from a fibro! I agree to plan for the unexpected since it seems everyone's birth story is so radically different. There is no way of knowing what your body and baby are going to do, CF or not!

      I so agree I wish you could bank sleep. The sad thing is by the end of pregnancy women usually can't sleep well anymore and so you go into motherhood a little sleep deprived which just escalates with the needs of a newborn.

      I know Cindy is planning on trying breastfeeding and supplementing with formula, but the best feeding advice I got is that if baby is having regular wet/poopy diapers and is growing then they are eating just right!

      Thanks for stopping by John and sharing your advice. Maybe when life is a little less hectic you can be a guest blogger too!

    2. Okay, I just reread that after posting and wish there was a "edit" button. I realized I wrote here instead of hear and made a million errors! Can I blame sleep deprivation???

  3. Blame sleep deprivation all you want. Pregnancy brain has made me the worst typo-er! It is so embarrassing!!!

    John and IH - yes, banking sleep would be nice! I don't sleep well at the best of times, though I've actually been sleeping a little better this week since starting my childbirth class, which uses hypnosis/deep relaxation, LOL. And yes, I am planning to try to breastfeed but also supplement with formula. I'm not sure what balance we will be able to work out yet, but I'd hope to do about 50-50 - I guess we'll see! I'm definitely not making too many definite plans... life never works out in quite the way you expect it to!

  4. thanks for sharing.

    1. Thank you for stopping by my blog and reading about my guest blogger. There should be another guest blogger coming soon!