Although me and my boyfriend aren't yet living together we knew that difficulties from CF mean it's very rarely a case of 'wham, bam, thank you mam' and there's a bun in the oven. Also CF pregnancies can put a lot of strain on the body so it is important to be in the best physical condition before becoming pregnant, as I know someone who spent a year getting to the best possible health ready to start trying to conceive (TTC) we decided to go have a little a little chat with the CF doctors long before we were actually ready to start TTC. So that was about a year ago and this little chat resulted in me being advised to go on the pill, not quite what we wanted to hear but a sensible move. Although my weight and lung function were in the OK range to consider pregnancy they told me my bad diabetic control could potentially make pregnancy dangerous for both myself and the baby I was carrying. So I rapidly made an appointment with my GPs family planning nurse and also started a new insulin regime to try and get my hba1c (long term blood sugar level) down from 14.6% to a pregnancy safe 6.5-7%. Following the chat my boyfriend was referred to a genetic councillor to be tested to see if he carried any of the most common mutations for CF. At the time this just felt like a formality, it's only one in approximately 22 people who do have a single mutation so we doubted he would but unfortunately he does have a single copy of the DF508 mutation, the most common mutation to have. When we first found out I cried... a lot! We weren't sure what our options were apart from try naturally and hope we avoided the 50% chance our baby would have of getting CF and this to me isn't an option so it felt like our chances of being parents were over (we've since found out there are other options but I'll talk about those another time.) I wasn't one of those girls who planned a wedding as a little girl but I have always wanted to be a mum and it felt so horribly cruel to have my hopes ripped from me at that time. I didn't want to be near anyone who had kids or was pregnant. Seeing young children was enough to set me off crying, not good when I can see a local playgroup from my window. Looking back I should've asked to see my hospital's CF psychologist, I wasn't looking after myself and my weight and lung function dropped a fair bit. Things did pick up though, once we realised it didn't mean 'game over', and I'm fairly stable, both physically and mentally, now.
So yeah, that was August/September 2012 and I'd definitely recommend anyone with CF who wants children 'one day' to get their partner tested once they're serious, long before they actually want to start TTC as although it's unlikely they will be a carrier its far from impossible and if they are then there are options but they aren't perfect, they're potentially very expensive and they take some time to get your head round before you can make the decisions that a right for you as a couple.
As for us, we're currently in a limbo, we've talked lots about the different options, ruled some out and we think we have a plan for when we are ready which will be soon after we start living together, hopefully in the early part of 2014. I'm still working on my diabetes and have my hba1c down to 9.2% so still a way to go but big improvements, I'm maintaining a healthy weight and working on getting my lung function as high as possible and keeping it there.
Very sorry for the long post, I rarely write anything but when I do it's a bloody essay!
