June 2017 Moms

Cystic Fibrosis

My rollercoaster continues. I found out today that I am carrier for the Cystic Fibrosis gene. DH now has to go get tested, if he is also a carrier there is a 25% chance our little lady could have it. Does any one have any experience with any of this? I have done a little research and found that while things are different with treatment a infant/child/person can live a normal life. Being pregnant is not helping me handle all these emotions I am feeling  :/
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Re: Cystic Fibrosis

  • No advice, just hugs! FX DH isn't a carrier. Please keep us posted.
  • @Stankonia2014 thanks, hugs are definitely needed.  <3

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  • More creepy internet stranger hugs coming your way!!!
    Me 37, DH 40
    BFP #1 6/13 DD 3/14
    Mirena 10/14-5/16
    BFP #2 9/2/16, CP confirmed 9/8/16
    BFP #3 10/10/16 EDD 6/22/17
  • krexkrex member
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    Ugh, what a roller coaster!  Huge hugs coming your way!
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  • Im sorry you have this stress. No advice but fx your h isnt a carrier.
  • FX you get nothing but good news here on out!
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  • I'm so sorry. It's unlikely your DH is a carrier. Fingers crossed and I'll join this giant creepy cyber group hug we have going on here!
    Me: 31, DH: 34, Diagnosis: MFI, TTC #1
    IUI #1-3: Nov 2015, Feb 2016, May 2016 = BFNs
    IVF: July 2016 (20R, 12M, 10F, 8B) = 7 PGS Normal
    FET #1: Sep 2016 (single embryo) = BFP!!
    Beta #1 (10dp5dt) = 179, Beta #2 (12dp5dt) = 480
    Baby Girl! EDD: June 3, 2017

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  • How long will you have to wait for your husband's results? I hope not long and that you're able to get some good news. Sorry you're so stressed about this. 
  • @MotherofDragons it took 15 calendar days to get my results back - so I am assuming the same for his. I honestly forgot about my results and figured it was a no news is good news situation since I was busy thinking about the NIPT results that I took  two days after this test and found out the results on Monday. DH couldn't make it to the doctor's office today and is planning on going first thing in the morning but we are supposed to get a foot of snow between 1a tonight and tomorrow end of day so we will see if he is able to go or not. If not he will go first thing Monday since they don't do the genetic tests on Fridays.

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  • Stay positive!  I know it's hard.  Keep your head up and pray for the best.  
  • I'm sorry you're stressing. I know that's such a scary thing to be thinking about. Hang in there, lady. Big hugs!!
  • Giant creepy sticky with BO internet group hug!! If it helps at all one of my hs friends has CF and is living a very full life as she approaches 40. 
  • @Knottie42089123 thank you - that does help!
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  • Back when I nannied, I worked for a lady that found out while she was pregnant with her second that her and her husband were carriers. Both her kids ended up being totally healthy and after her baby was born she got her tubes tied. Hopefully your husband won't end up being a carrier. But I just wanted to give you a story with a good outcome, just in case. Hugs! 
  • We're all thinking of you and sending positive thoughts your way!!!
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  • mrtmrt member
    Long-Lasting Membership 500 Love Its 100 Comments Photogenic
    Hope you get good news from your husband's test. Also, looking at this storm in southern New England, he's going to have to wait until Monday to get the test. Probably not worth driving tomorrow morning, if the doctors office is even open. Sorry that makes your wait and worry longer.
  • Sending good thoughts your way. 
  • So sorry you got this news, FX your husband is not also a carrier... even if he is, odds are in your favor.  I know none of that helps the worrying and stress though.  ::hugs::
  • @mrt You are right, definitely not worth the drive just to shave off a few days of waiting and the office is closed regardless. I think we have 4 inches of snow already and it's coming down like crazy. 

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  • Good luck with your hubby's testing! Hopefully he's not a carrier and there's not cause for concern. My husband's confirmatory results for the 3 genes that I was initially positive for took a LOT quicker that mine (we did the saliva swab), so hopefully you'll hear back sooner than 2 weeks!
  • @gabadoo Thank you! DH is doing the same blood test I did. Horizon - Natera Carrier Screen, so thinking it will be about the same.  

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  • FX you get good results about your husband not being a carrier. Chances are very good that you will, but I know it is stressful.

    I had a close friend with CF growing up, and she had a truly wonderful and full life. She needed treatments, but she was happy and did everything the rest of us did - sleepovers, school trips, dances, general teenager nonsense. She lived to be almost thirty. It's a really serious diagnosis, but it isn't the horror it once was, and they are doing so much research and making so much progress on treatments. 
  • Will be keeping you in my thoughts! Keep us updated when possible. 
    Me: 29
    DH: 29
    DS: 18 months 4/2/2015
    Baby #2 EDD: 6/1/2017 
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  • Hopefully your husbands results will come back quickly so you don't need to stress waiting. Hoping you get some good news! Hugs xx
  • Fingers crossed for you! 
  • Fx for news your H is in the clear!  Pardon me for lurking, but MH is also being tested for CF carrier genes, amongst other things, although he has been dragging his feet on going in... :/  hope to hear good news soon!

    Turns out my BFF is a carrier, just like you, although I don't think her H has ever been tested.  I think a lot of people must be totally asymptomatic carriers, so hopefully it's nbd for you guys, either, and your sweet LO ❤
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    Me: 33 | DH: 40 ~ Married / NTNP #1: 05.30.2015 ~ TTC #1 November 2015

    5/16 - Began Creighton Method CM Tracking / Napro Fertility Medicine | Progesterone + various abx cycles - all BFNs
    8/16 - SHG: ute good, at least one tube open | Adrenal saliva test: chronic stress cortisol levels -> started adaptogens
    10/16 - azoo dx confirmed.  More bw and TRUS to determine differential dx.  Waiting for more bw and another u/s...

  • @BusinessWife no worries about lurking, I searched for other threads (even in other months) for this topic and couldn't find anything that was recent. Hoping he gets in soon and for good news for both of us.
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  • @graceriesz, I know a set of identical twins with cf. They both played hockey all growing up and in college. Birth are married, have phd's, and are quite healthy as they approach 40. 
    Married 8/29/09
    MC: 9/14
    Goober #1 born: 8/17/15
    MC: 9/16
    Goober # 2 EDD: 6/27/17
  • @shmarpler thank you for sharing. 
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