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Posted By : Chance2013 - 1/30/2014 11:15 AM
Hello out there.

I just happened to find this board as I am trying to find if there is anyone out there like me. I am 35 years old and married my love 3 years ago. My husband has Cystic Fibrosis and has already had two lung transplants. We also went through an extensive process including a procedure to aspirate his sperm, In Vitro Fertilization, and Pre-genetic determination in order to have our own healthy biological child. (I am also a carrier of CF which I did not find out until after I married my husband). We now have a beautiful and extremely healthy 9 month old baby boy. But living with the knowledge that CF will take my husband probably sooner than later is a daily struggle and it is hard to find others who are facing a similar situation. I found this board this morning and thought I would give it a shot!


Posted By : mommagilli - 8/18/2014 9:10 AM
Hi, our situation is different than yours, but I am really hoping you'll reply! I am sorry to hear what you're facing but so happy to see you have a healthy 9 month old! My husband and I had our first baby in March of this year. In pregnancy, we found out we are both DF508 CF carriers. about 3 weeks before finding out, we bought a Honda Pilot and planned on having 3 kids pretty much back-to-back, with one hopefully being adopted. So we were REALLY crushed. We had a CVS at 12 weeks and found out we were having a perfectly healthy little girl, not even a carrier!! We aren't sure what to do now. We had considered PGD but didn't know about the procedure and cost, if insurance helps, etc. Do you have any advice or insight into that process? Any advice about having a baby naturally with a 25% chance? We just feel so uninformed and know that internet data of CF gets outdated very quickly. Any info you have is appreciated!

Posted By : Chance2013 - 8/18/2014 10:45 AM
Hello there! I am at work right now but I will definitely write back when I have a chance! I do have info on PGD and how it works. I will be in touch soon! You can also email me if you want and we can talk directly through email. Be in touch soon!

Posted By : mommagilli - 8/18/2014 11:22 AM
Wow, that would be so great! I will email you directly right now; let me know if you don't get it. Thank you so much!!

Posted By : Wiley Coyote - 1/31/2015 5:29 PM
Hmm, I'm a woman w/CF married (almost 20 years now, whew!) to a man w/o CF. Chance2013, your husband must be a tough man, 2 transplants, wow. We have two daughters, both adopted, the elder from Azerbaijan, the younger from the US. Mixing CF parenting and kids is quite a journey. I guess we're similar in that I worry about CF taking ME prematurely and leaving my husband and kids alone. Not pleasant thoughts.
CF DDf508 w/ CFRD (dignosed 3 months) 43 years old, 2 kiddos

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