Spring

Spring has arrived gently this year. The heat of May never showed its face and we have been soaking up the cool days and even cooler nights. This spring weather in combination with my behaving lungs has brought a constant flurry of activities. It has been a welcomed change to the hibernation and sickness that winter brought and I feel I emerged this spring as a new person.

Rather than finding comfort and therapy through the keys on my laptop posting to this blog, I am finding therapy in the days I spend splashing in the river with Kaylee, conversation with friends and neighbors, long walks and bike rides, feeding the baby ducks along the canal, and spending entire days tending to the garden.

I am finding my peace watching Kaylee pick handfuls of beans and a fist full of carrots only to flop down in our strawberry patch and have a breakfast straight from the Earth.

I am finding my healing in the mornings that I don't wake up coughing, the laps I can swim at the gym pool, and the roundness of my belly that only comes when my health is doing well.

I am thankful every single day that I wake and feel well, feel like myself, the self I should be. Not the self stifled by this debilitating disease. I know, after 31 years with this disease, that hard days are around the corner, my lungs will struggle to get my through the day, and the hospital will be my temporary home once again, but until then I am basking in the warmth of the sun, fresh air, and health that this beautiful spring has brought along with it.

Guest Blogger- Anika

It has been a while since I have been able to say this so I am extra excited to introduce another mom-to-be with Cystic Fibrosis. Anika is 26 year old and author of the blog, Faux Islander. She is more than half way through her pregnancy at 24 weeks!

 

Everyone that has CF seems to have a very different experience. Share a little about your CF story or how CF effects you.

At six months of age I was diagnosed with cystic fibrosis as I was not gaining weight or thriving as normal babies should. Other than not being able to digest food without taking enzymes, the CF didn’t start to affect me, well my lungs in particular, until I was 22 years old. I started getting reoccurring chest infections and had to be hospitalized for the first time with IV antibiotics at 24 years of age. As my lungs have always been healthy, it’s a bit scary for me now as I get older to see them deteriorate so quickly but I am very diligent in exercising and doing my nebulizers which helps to keep them infection-free. Regardless of the hospital admissions and lower FEV’s, I am very blessed to be as healthy as I am with CF; it is something I do not take for granted.

Deciding to have a child when you have CF is a very difficult decision. Please share how you came to the decision to ttc.

 Having kids and a family is something both my husband and I wanted, it was just the timing we were unsure of as we are newly married and didn’t know if we should work for a few years and then ttc or just go for it! In the end, we decided to just stop using protection and see what happened as I wasn’t even sure if pregnancy was possible for me due to my CF. It was definitely a surprise when, one month later, we found ourselves on the road to parenthood with a positive pregnancy test.  

 

What were some of your biggest fears regarding the pregnancy itself? So far have those fears been warranted?

 

Wondering how my lungs are going to cope is definitely the biggest fear I had, and still have with my pregnancy. I wasn’t sure if getting pregnant would cause my lungs to deteriorate faster and thus leave me worse off afterwards but the doctors and my CF team have told me there is no evidence to believe that getting pregnant takes years off your life in regards to the strain it puts on the lungs etc. I found this very reassuring and was thankful they addressed that fear because my lungs have suffered more infections during pregnancy than what is normal for me and it is easier to cope knowing that exacerbations during pregnancy are normal and will (hopefully) only be temporary. I am 24 weeks and have had IV antibiotics twice as, both times, I got sick with a normal cold and couldn’t get the infections cleared solely with oral antibiotics. I am very diligent in exercising and doing my nebulizer (hypertonic saline) with the hopes that I can prevent more exacerbations, or at least extend the times between them.

 

How has your pregnancy gone so far? What have been some of the biggest challenges in your pregnancy so far?

The biggest challenge for me has been trying to avoid getting sick. Ironically, the actual pregnancy itself has been such a pleasant experience; I’ve had no morning sickness, no nausea, no heartburn, and no food cravings or aversions. Sure I slept a bit more in the first trimester and I have the occasional ligament pain as the uterus expands but from some of the stories my friends have told me of their pregnancy experiences, I know mine has been a cake walk in comparison.

 

How do you feel your pregnancy is different that a non-cf pregnancy?

 I think the biggest difference (as best as I can theorize) is that moms without CF don’t have to worry as much about their own health; their stress and anxiety is aimed mostly towards the well-being of baby where as a mom with CF is hyper-aware of every little difference she feels in her lungs (or body in general) as it is hard to know if it’s just a normal pregnancy symptom or a CF symptom which needs to be dealt with.

 

What are your doctors doing in order to ensure your pregnancy is healthy (more doctor appts, change meds, etc)?

 Anticipating my need for more frequent IV antibiotics, my CF doctor inserted a PICC line in my left arm which will stay in until after I deliver as it allows for quick and easy administration of the meds. Having the PICC has actually been such a blessing by taking away a lot of my stress because I know that if the need arises for IV antibiotics, I can basically get them started instantly which is vital to managing lung infections; the sooner the treatment is started the better the results.

 

What are some of your concerns about mothering and CF?

Initially, I am quite concerned about the first few months of motherhood as the needs of the baby are in high demand which means little sleep for me and, inevitably, result in a weaker immune system to fight off colds. Once the baby sleeps through the night I am anticipating and hoping things will then stabilize and I can just carry on carrying on.
I do think about the future and the scary thought of leaving behind a young family if I die earlier than later but not doing things in life (like not having kids) because of fear or because of my CF is not the way my husband and I have chosen to live our lives. No one can know what the future will bring, so just be thankful for every day the Lord gives you…… and live!  

If you could give advice to a CF woman who is ttc or is pregnant what would you tell them?

 I would say, don’t lose heart or get swallowed up with fear if you are constantly finding yourself fighting off chest infections; frequent exacerbations are normal as making a baby puts huge demands on the body causing even perfectly healthy women to suffer more. Also, try and make sure you have supportive people in your life to encourage you and help you. My husband has done an absolutely amazing job at calming my fears and remaining positive when I hit some of those lows; he is my constant companion and helps out in any way he can. My family has also been a huge support and I am comforted to know they are here to help once when the baby finally arrives.
Pregnancy is hard on the body so take the time to care for yourself, whatever that may be.  

**Anika gave birth to a healthy baby boy July 25, 2015 at 36 weeks gestation. He was 5lbs 15oz ***


To read the stories of other women with CF and their journeys with CF and pregnancy/motherhood please click here.

If you are a CF mother (though adoption, step children, surrogacy, fostering) or are CF and pregnant and want to share your story e-mail me at inhalinghopecf(at)gmail.com