Getting ready to start IVF. My husband and I are CF carriers

Romel08

I am a bit nervous.  My husband and I have been trying for over 2 years.  We went to the fertility center October of last year and had all necessary tests done. He was fine and I was fine.  Unexplained infertility.  The frustration mounted. Among all the testing, we opted for the genetic testing and that is when I found out not only am I a CF carrier, but so is my spouse.  My emotions are up and down.  This is such a difficult process to understand.  Do we continue with IUI as previously planned and hope that our child is not the 1 in 4 affected or just continue with IVF, which my insurance does not even cover?  Looking into supplemental insurance which was suggested, but still does not cover IVF and meds 100%. Any one in this situation and who can offer any advice about dealing with IVF for the 1st time? Any CF carriers who have to deal with the same situation?  Just looking for some support and guidance here.

przemosbabe

I am not much help but I do know that CF is not the death sentence it use to be. I'm not saying you won't have medical tribulations but your child won't exactly be suffering. I know this personally. I mean i guess everyone is different but life isnt miserable for all CF patients. It can be mild or severe but there is good medical treatment. This is a very personal decison, but I would say If you're worried about it you could get IVF and have the embryos tested. I'm sorry you are worried about this. I'm having high hopes for you and your husband that everything will be ok.

yvonne0001

Hi @Romel08‌ ... My husband has CF. I am not a carrier so we are not concerned with our maybe baby, though they could be carriers.

My perspective comes from someone who loves and respects a man who has CF and I would not have it any other way. Treatments are way more advanced, his condition is under control, and yes it is stressful and hard but as I told my husband when we have been discussing PGD... If his parents had had the choice of having him or some other kid with no CF, I would take him hands down every time. The world is a better place with him in it. Even though he has to take pills when he eats and visit doctors often and what not, it is not the death sentence it was before. It is just extra stuff to take into account.

I get the concern, obviously very well, but the chances are 1:4 and maybe it won't happen but maybe it will but it all will depend on how you approach it. When and if you get there.

I am undergoing IVF right now (our first cycle) because my husband cannot conceive naturally (we had to skip(IUI completely), it is hard and rough but again as someone who lives with CF day in/out, CF is just a part of our lives, it makes some things a little tricker but we have a good, happy life together.

May not be helpful but just offering what I can. If you want to talk about CF or IVF or anything like feel free to PM me.

GL with whatever you decide is best for you and your husband

erbear84

Like @yvonne0001, I am married to a man with CF.  I wouldn't have it any other way, either.  They are SO CLOSE to curing this disease - in fact, there is a pill available for 4% of the CF population that works and one for my H's mutation that has been sent to  the FDA for approval.  My H was told as a child he wouldn't live to be an adult and get married and have kids.  Well, he had a successful TESE on Wednesday and we should be starting our first IVF very soon!  

It's up to you, honestly, to do what's covered or to pay more for IVF.  We don't have the option but if I could do something that was covered, I so would.  Best of luck to you and your H!

Romel08

Thank you all so much for your replies.  It means so much to know I can come here and find support with difficult decisions and questions.  I will keep you all updated with our progress.  I truly appreciate it!

crazygirl7882

I believe you can get genetic testing on your embryos to see if they have the cf gene. I researched it after I found out that I'm a cf carrier, but luckily hubby was not. It might be expensive but I'm sure it's cheaper than the medical expenses associated with raising a child with cf. Good luck with whatever you decide!

Twinkie0612

I found out early on in our infertility treatments that I am a CF carrier, but luckily my husband is not. We had talked while we were waiting for his tests to come back that if he was a carrier that we would move on to IVF with PGD. Our situation is a little different in that we don't have any infertility insurance coverage, so IUIs were out of pocket as well. When we found out he wasn't a carrier, we did 3 more IUIs, but none of them worked and we ended up with IVF anyway.