Just Found Out I am a Carrier of the Cystic Fibrosis Gene: Update in comments

okaykoala

My OB just called me with results from my bloodwork. Turns out, I am a carrier of the cystic fibrosis gene--I had no idea; I can't think of anyone in my family who has it. My husband is getting tested tomorrow, but we wound find out his results for a couple weeks.   

I am freaking out--I almost wish I hadn't found out at work because I started sobbing the second I got off the phone. It's just such a horrible disease, and I would feel awful giving it to a child. Has anyone else been through this? 

sparklingdiamond

I haven't been through this, but I just want to say I am sorry that you got these results.  Hopefully your husband is not a carrier!  I will be thinking of you.

mileswithmyles

We went through this with BIL when they had their first.  He was a carrier, but his wife was not.  I was tested with DS and since I was not a carrier, they decided not to test DH.  

I have worked with a few students with CF over the years.  I know it seems really scary, but they have made so many advances in the treatment over the last few years and I know their parents were very optimistic about the treatment options that were available.  FX that YH is not a carrier and your mind can be at ease.

Ceridwen77

Sorry to hear this. The odds are on your side. It’s less likely that your husband is also a carrier, and if he is, then you’d both have to pass the gene, which is only a 25% chance. I know it’s not odds we want to hear (we all want 0%), but the odds are on your side. Good luck. 

thunderberry

I'm so sorry. I don't have experience with this exact issue but have recently also been given scary news about risks of health issues and know how hard it is. I hope things turn out well with your husband's test. The waiting is so hard though. Just remember the odds are still in your favor! 

sharkmama39

@okaykoala I went through this with my first. Dr. called to tell me I was a carrier and I spent the next two days researching everything while DH set up a blood draw and we waited results. Thankfully he was not a carrier. Like previous posters have said, the odds are in your favor. Will send positive vibes your way.

theletlers

No experience, but sending some positive thoughts to you as you wait. Hopefully some good news from DH's test!

bearwithme

Sending hugs. We did the carrier gesting and I carry MCAD. We are also waiting for DS's blood to come back to see our risks for that. I know it's easier said than done, but try not to stress until you have all the results back. Your gene is only a piece of the puzzle! 

okaykoala

Thank you all for your kind words and positive vibes! This is just such a surprise. Not something at all we anticipated being an issue. 

@thunderberry and @bearwithme, I'm sorry you're also dealing with health issues--I hope you're finding some peace within the stress. I'll be thinking of you two.

sandbar517

Sorry you're dealing with the stress of waiting for your husband's results, FX that you get good news.  Thinking of you and sending hugs.

motherof2monkeys

No experience of this, but I’m definitely hoping you get the all clear! Thinking of you, and sending virtual positive vibes! Xxx

Julesby

Ahh mama, I'm sorry. Two years ago, I was in your shoes. I got a call at work- while working in an open workspace - that I am a Fanconi Anemia carrier. My family has traced our tree back centuries and we have no Jewish heritage, so I was dumbfounded. 
My husband had his blood work done and it took 2-3 weeks between results to get good news. He is a carrier for something else (neurological I think), but we aren't both carriers of the same thing, so we are fine. 
I know it's hard, but try not to worry. The chances of your husband being a carrier are very, very slim. Like you have a better chance of winning the lottery slim. 

okaykoala

@Julesby My OB called me when I was at work in a (relatively) open workspace too! One of my coworkers came upstairs to talk to me about a project immediately after, and I felt so bad because she awkwardly just offered to come back later--I was that upset. Poor thing; she was so taken aback!

I'm glad things worked out for you and your husband. Thank you for your kind words!

maplemom18

Yes! I found out during my first pregnancy 3 years ago that I am a CF carrier. I was also completely shocked as no one in my family has the disease. I remember getting the call on a voicemail at the end of the workday Friday  and it was the absolute worst time. I couldn't even talk to the doctor until Monday (for what it's worth, she didn't consider it a big deal and said that she'd never had a patient where both parents ended up being carriers). My husband got tested that Monday, but it took about 2 weeks to get the results. In the end, he was not a carrier. I warned all of my cousins that I was a carrier so they could make their own decisions about whether to test before children or not. 

I totally get where you're coming from; it's really scary. We did a fair amount of (internet) research during those 2 weeks and honestly, the only thing that made me calm down before we got DH's results was making a decision about whether or not we would continue the pregnancy if we had an amnio or CVS test that showed the baby had CF. It just felt better to have a plan.

My thoughts are with you and feel free to PM me if you want to chat more.

okaykoala

Hi, everyone! My husband and I met with a genetic counselor before our NT scan yesterday, and my husband's results came back negative! She did tell me I'm also in the "gray zone" for fragile x syndrome but said I'm not a an actual carrier. According to her, it could affect future generations (grandchildren, great-grand children, etc.) but she said that's more of a "tell our child when they're thinking about having babies of their own" sort of thing. It still makes me a little nervous (I'm a worrier and can easily convince myself of the most implausible things) and sad about potentially passing this on to my children's children, but I'm going to trust her at her word (it's her job, after all) and be reassured that all is well with this baby. Thanks again for your support! 

gildah

Wonderful news about your husband!
Sorry about the fragile X worry:-( It sounds like it will work out though!

nanifrog

Glad to hear this! Our grandchildren will have a whole mess of things to deal with. Don't waste energy worrying about this. By then they'll be testing for these things during conception anyway.

theletlers

@nanifrog by then they probably will have a more scientific way of making babies altogether!
@okaykoala I'm very glad to hear that his was negative. I'm sure that allows you both to have a huge sigh of relief!

abhphilly

@okaykoala Great news! And along the lines of what @theletlers  said, my sperm donor is a carrier for congenital deafness and what the genetic counselor told us was that by the time our kids are ready have kids, genetic mutations probably won’t even be an issue anymore. Science moves quickly. 

kimmy9876

Great news! I agree with those above, in the future generations I think a lot will change 

Kendrajos

Yay! Glad that you got good news !