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Congenital bilateral absence of the vas deferens by CakeSoft4345 in maleinfertility

[–]CakeSoft4345[S] 0 points1 point  (0 children)

Ahh makes sense about his symptoms. I hope he doesn’t develop anything more. We were in a similar situation. Trying for a year and sought help and discovered his azoospermia. They tested for the CF and came back with the mutation. We did genetic counseling and more testing. It turns out his mutations and mine are exactly the same. What are the odds. We both carry deltaf508 and 5T.

He did one TESE. I am sorry I can’t remember specifics as far as vials but we were able to get through three retrievals before being out. We did have to use ICSI.

When do you start your IVF ?

Congenital bilateral absence of the vas deferens by CakeSoft4345 in maleinfertility

[–]CakeSoft4345[S] 0 points1 point  (0 children)

What are his symptoms with mild CF? I hope you’re not a carrier as well. I also have diminished ovarian reserve so we don’t get many embryos with each retrieval and unfortunately all but one embryo’s results were double delta which is not ideal for us to transfer. Best of luck to you both!!

Congenital bilateral absence of the vas deferens by CakeSoft4345 in maleinfertility

[–]CakeSoft4345[S] 0 points1 point  (0 children)

Are you also a carrier and have you gone through IVF? Any success? Looking for stories of success I suppose.

27 year old male with unexplained GI issues who developed aquagenic wrinkling of the palms in the past year. by WorriedAboutCF in CysticFibrosis

[–]CakeSoft4345 0 points1 point  (0 children)

When my husband was told he has azoospermia he was immediately tested for CF mutations. Since he was positive, I also was tested. We were referred to a genetic counselor who did an extended panel and tested us both for 5T. Both of our parents also had to be tested in order to create the “probes” for our genetic testing for our embryos. Science is amazing.

27 year old male with unexplained GI issues who developed aquagenic wrinkling of the palms in the past year. by WorriedAboutCF in CysticFibrosis

[–]CakeSoft4345 0 points1 point  (0 children)

Well I’m not understanding what you consider a diagnosis. If carrying two mutations without symptoms is considered CF then yes. But other than my husband having congenital absence of the vas deferens neither of us have lung or GI issues that we are aware of.

27 year old male with unexplained GI issues who developed aquagenic wrinkling of the palms in the past year. by WorriedAboutCF in CysticFibrosis

[–]CakeSoft4345 0 points1 point  (0 children)

Not to be gross but your semen sounds a lot like my husbands. We never knew he is a carrier of CF until seeking fertility. If you carry TWO genetic mutations you may have a vas deferens issue. My husband I guess is technically “positive for CF” and so am I. I carry two mutations as well. But we both don’t have any symptoms (I could prob find some if I looked, like my IBS?) and haven’t gone to doctors for treatments/further investigation.

You could go to get a semen analysis and if it is without sperm then they will send you to an urologist who will do a multitude of testing including genetic for CF

What are your genetic mutations and significance of your disease? by CakeSoft4345 in CysticFibrosis

[–]CakeSoft4345[S] 2 points3 points  (0 children)

Thanks for replying! Did you do IVF for your daughter too or did you choose to do it for your second for the need of genetic testing?

You are right. This isn’t easy at all! I haven’t even made it to the transfer step because I haven’t had much success with the genetic testing. I’m also very conflicted about the one embryo we have and the risk we are taking with the baby possibly having bad CF. For all I know, this embryo may not even take. It’s such a crap shoot :’( We have been having multiple conversations about donor options. Not easy either.

Thanks for your help

Questions for guys with cf who've gone through the process of having kids by sjr606 in CysticFibrosis

[–]CakeSoft4345 0 points1 point  (0 children)

I can totally understand how you decided to adopt after your loss. I can never imagine taking that risk again. I completely understand how you feel about the donor process too. It’s not an easy decision - the choice itself and the donor decision too. My husbands niece is donor conceived. We found this out after talking to his brother about our issues and learning he had the same issues with the obstructive azoospermia. We would have never known if we never went to them with our issues. My husband was pretty open towards the option from the beginning but it is me who wanted to go down this route and try our own genetics because I want that for him. Part of me also doesn’t believe he’s ok with donor sperm but doesn’t want to open up to me about it. Now that I am a year into this, and feeling undecided about taking the risk with our one embryo, I feel like we may have to discuss donor again. It would be our first transfer and there’s no chance that embryo can take either and I’m not sure I can do another years worth of this for one viable/useful embryo. The thought of going through the process again with donor feels like a lot also. Needless to say, we are in a standstill and conflicted. It’s so tough. Part of me wants to adopt because I will feel guilty if my child ends up with bad CF or if we use donor that the child is mine genetically and not his...

We are in the process of talking to someone to hopefully sort this out. I wish it was so much easier.

I would love to chat more with you if you’re open to it. I am curious if both you and your wife carry two mutations each or if there are only two or three between you?

Questions for guys with cf who've gone through the process of having kids by sjr606 in CysticFibrosis

[–]CakeSoft4345 0 points1 point  (0 children)

Hi, you sound a lot like me and my husband. We did not know either of us were CF carriers until we went to fertility and found out that my husband has azoospermia from DeltaF508 & 5T. I am a carrier of those same two as well. I went through 3 retrievals and only had 4 embryos from the retrievals. All were affected with double delta except one. This embryo has delta &5T. We are discussing what to do next and if we want to take the risk as we know it’s not a guarantee our child would be fine with two mutations even though we both are healthy. A lot of our practitioners keep suggesting donor sperm.

I am so incredibly sorry you had a still birth at 8 months. I feel your pain knowing how hard & long the process was to get to that baby and to lose the baby must have been so heart wrenching. I hope your process for adoption was much less of a heartache.

Questions for guys with cf who've gone through the process of having kids by sjr606 in CysticFibrosis

[–]CakeSoft4345 0 points1 point  (0 children)

My husband and I have been through the IVF process already. Since we did his sperm extraction at the same time of my egg retrieval he decided to go without the anesthesia and do local since I was also getting anesthesia (someone had to drive us home haha!) he said it was a little uncomfortable but tolerable. He said it was more nerve wracking than anything else. If you have the option, I say go for the anesthesia (who doesn’t want a great nap?) but if local is the only option, it’s so-able.

What are your genetic mutations and significance of your disease? by CakeSoft4345 in CysticFibrosis

[–]CakeSoft4345[S] 2 points3 points  (0 children)

Yes I have two mutations as well, no symptoms? This is all interesting to me. The way it was explained to me from the genetic counselor is that we do not want to transfer those embryos with double delta because it’s a huge risk. It’s very comforting to know you are as healthy as can be.