Friday, February 10, 2012

My Body And Baby

Deciding to have a baby when you have CF is such a hard decision. I spent countless nights trying to decide what the right decision for my little family would be. Was it selfish to want a baby and risk my health? Would I ever be happy without at least trying? Would I be cutting into the time I have on this earth with my dear husband?

Fast forward to this week. I am 22 weeks pregnant and had a clinic appointment to check on my lungs. I was down a 3% last month and the doc wanted to make sure that it was not a trend of losing ground. Turns out I didn't need to worry. My FEV1 is now over 5% higher than my baseline and the highest it has been since 2004! My FVC is now 100% which is only a little higher than it was before, but I will take it! My weight is up almost 10 lbs and I am feeling amazing! My doc who was not overly thrilled that I wanted to get pregnant has always been supportive, but not overly excited about it. This appointment was different. He seemed genuinely pleased and was very optimistic about the rest of my pregnancy. He said I had a great chance of going full term (or darn close) and he predicts I will do well for the duration of the pregnancy.

I am not naive and know I have up to 20 weeks left (if baby comes late) and anything can happen. CF is unpredictable and as baby gets bigger and squishes my lungs it will be harder to clear them out, but I never in my wildest dreams thought my body (CF and all) would do so well during the first half of pregnancy. I heard so many stories and was fully prepared to be very sick, weak, and tired during my 9 month pregnancy.

So how did this happen???  Many people on CF forums say they would never attempt pregnancy if their numbers were below 70% and others say they wouldn't try with numbers below 60%. And yet here I am with PFTs in the 50s (pre-pregnancy) and  doing so well. My question is, how?  I wish I could take credit for doing so well, but it really was luck!

My doctor said that there are usually 2 routes they see with CFers who get pregnant. One, the patient has trouble gaining weight and loses lung function throughout the pregnancy. The beginning transition to pregnancy is often the hardest for women and this is often when the first trouble occurs. The other category is somewhat of a phenomena. Some women seem to do better during pregnancy than when in a non-pregnant state. They gain weight easily, they watch their lung function increase, and feel better than before.

Why? Well, because CF and pregnancy is not well studied, nobody knows! It does not make sense as creating a human life is draining and very hard work so how would a taxing situation on the body also be the time that a person is their healthiest?  My doctor said some people believe it has to do with hormones, but that is really just a guess.

When I was telling a few friends about my appointment they responded by saying I should be so proud of myself, but I am NOT! I am proud that I have been working hard and doing my treatments, but I do not feel like I can be proud of my increase in lung function. I had no say in how my body responded to pregnancy and therefore cannot be proud of something I simply got lucky with. Would I feel bad about myself had I not done as well? No, because I would not have chosen that either. If my lung function starts dropping quickly by my next appointment will I feel like I failed? No! I try not to personally attach myself to things I have no control over. I AM however, grateful every morning I wake up and feel well. I feel like I am dreaming that I will be a mommy and am still waiting to wake up. The fact I am doing so well makes it that much more surreal. Not a day go by that I don't stop and thank my body and realize how lucky I am to be feeling well and loving this pregnancy.

At first, I felt weird writing about this (I had an appointment on Monday and delayed writing till today) because I felt like I was bragging and know that many cysters are not finding pregnancy so easy. I decided that I wanted to write this because I had so many doom and gloom comments about CF pregnancy from the CF community and I wanted cysters to know that it isn't always a bad experience even with someone with lung function in the 50s. Of course, we all know it is a risk and there aren't always happy endings, but we need to hear the good with bad.


  1. Thank you so much for sharing this! It really gives me hope that as I work hard to keep my lung function in the 50's maybe I to will be able to have a little one some day. I'm so excited for you and your amazing luck! I can't believe how perfectly everything is going. I can't wait for the little one to be here. You're gonna be an amazing Momma!

  2. Inhaling Hope, this post made me so very happy. I am thrilled that you are doing so well in your pregnancy and that your lung function is not only maintaining, but increasing. I know the sleepless nights you have had wondering about what to do because I still go through them. I'm so terrified of pregnancy and how it will effect me, but I also know I want to try. We cysters NEED to hear these good posts because I feel like the bad posts are what we focus on. The truth of the matter is that none of us have any idea how well we will fare with pregnancy, no matter how calculated everything thing. We can predict, based on stability and FEV1, the chances for a successful pregnancy for both baby and mommy, but we can't be certain. That's what makes this so terrifying for us. I hate how hard of a decision it is for us to have a baby, and I can't even begin to imagine how hard the decision would be to try for a SECOND child if the first went well. This post was beautifully written and you are NOT bragging at all! You are an amazing, strong woman and I just can't wait to read all of your posts once Peanut is here. You are going to be one incredible mother!

  3. Wow, not only was that an essay, but it also had some significant spelling/grammar errors. Sorry! I hope you can still understand what I meant :)

  4. Great post! I'm a cystic mom myself, and I did very well with my first pregnancy. I think people hear the warnings and horror stories so often that they forget there are also those of us who've had GREAT experiences. I truly hope that your luck and health continue, and if it's okay I'll be checking back often. :)

  5. Thanks for your support ladies! I so appreciate my cysters because nobody can really understand the life of a cyster except another cyster!

    Jenny- of course you can check in as often as you want :) I am so happy to hear your pregnancy was a great experience as well. I agree that we hear all the horror stories and so we forget that not everyone has a horrible pregnancy experience.

  6. Way to Go! You should be proud of yourself, all of you hard work and dedication has paid off. I am so happy for you!

  7. Thanks JWags! You are right I should be proud of the hard work I put in. Thanks for reminding me :)