Thursday, 26 July 2012

Having CF and preparing to try to start a family

          My posts on here will probably revolve a lot around Cystic Fibrosis and having a baby over the next few years as it's the stage in life we're at, but it holds far more complications than a normal person trying to have a baby.
         Firstly we have to discus it with far more people than you'd like to, I know if I didn't have CF I would discus it with my Marc and that would be it, until we could announce that we were pregnant but I have already had to speak to four people about the fact that we want to start trying today (and we don't even want to start until October) so that was my Physio, dietician, nurse and doctor. On top of that Marc and I have obviously talked about it, we have an appointment booked for him Monday at a genetic's clinic to find out if he carries the CF gene as that will add more complications(I will discus that in more detail after he has had the test, but please all have your fingers crossed for us that he is not a carrier) It's a 1 in 25 chance he could be a carrier, so quite high which makes me really nervous but we will just have to deal with it as it happens! (and if he is a carrier it makes it a 1 in 2 chance that our baby would have CF) Iv'e also discussed it with my Mum as she comes to a lot of my appointments with me, like today and also I will need her every step of the way especially as Marc works a lot and in London (We live in East Sussex) and he has told his brother as he wanted to discus the whole process with someone which is fair enough and they travel to work together so it's when they both get a lot off their chests to eachother as they have SO much time together, that's then led me talking to his girlfriend about it which she has been very supportive and she has a lovely little boy and another on the way any day!!!! exciting!! and I've obviously told my best friend. I haven't told my sisters for the very fact that they are already telling me I need to have a baby and they are so excited at the prospect that if they knew we were trying they would be relentless and if things didn't go to plan and it couldn't happen they would be as devastated as Marc and I! I'd rather just surprise them when it happens! Then I've obviously shared it on the CF Mums site as I know I will need their advice!

          So I told my Nurse first, she said my lung function was okay (58%), we all know it could be better, my best this year has been 71% but I am in desperate need of IV's and have just started some antibiotics to see me through to August when I'm going on IV's. She said on that we had the go ahead to start trying when we are ready. She explained how my lung function would be likely to be affected and that I would need to discus it with the doctor e.t.c.
     Then I told the dietician, she explained if I kept my weight where it is, that's a great start. That I would need to up my calcium to four portions a day(going to find that hard), would need to maybe decrease my vitamin A intake as that can be toxic to baby. And the big one is I need to keep check for Diabetes; as I was borderline on my last test so for the next 3 weeks I need to monitor my levels and keep a record to show Kings! I hate doing it as I have a huge needle phobia but got to get used to it, and it's not just for my health it's for our future. So I start that tonight and will report it back to them on the 14th August when I'm day cased for IV's. They also said to start folic acid a bit nearer the time which is something all ''normal'' people trying to conceive are advised and my sister in law says she has half a tub I can get started on which is great!!
          The physio didn't have much to hand over really except they have different techniques for physio as the pregnancy gets further on and that they would want to see me in hospital once a month at least which is fair enough and I will want to be assessed so I know I'm okay through out anyway. And then she said I did really good on the bleep test and she was really quite impressed (I was hanging after, sweat pouring and could barely breathe but I'm not giver upper!)
           Then I told the Doctor, she was really helpful actually, she said my Lung Function is fine to start trying but that obviously we'd like these Iv's to boost it then keep it up as much as possible as that would be better for me and baby. She said I would need to come off Azithromycin and couldn't have most antibiotics I have and that if it came to it I would possibly have to be de-sensitised to Ceftazadime whilst pregnant which scares the crap out of me but we will just have to cross that bridge when it comes to it! The reaction I had to that was when I was about 8, couldn't breathe, swelled up all over, itched everywhere, went dizzy, lost focus.... not something I'd like to redo but it would be desperate times calling for desperate measures. She also referred me to an ENT doctor as my sinuses are a bit weird and it's just another thing which might be able to be sorted to keep me well:) As sometimes it can be a real problem making me cough more than my actual lungs.

So they were all pretty up for helping me and didn't put too much negativity in. They asked if I would be ok having the baby there and I said it would probably work out better as I know them all and Marc works minutes away from there if he was at work when I needed him!

No comments:

Post a Comment