How to begin to address infertility issues? (Male partner who has CF)

C

cf1gf1

New member
Hi all,
My husband has CF. We have been married 3 years and have always hoped that we will be able to have a family, whether biologically or through adoption. We have decided recently that we might be ready to start exploring our biological options.


I have done enough research to know that we will likely have to do IVF, and that the first step is to do genetic counseling (I have no idea if I am a carrier). However, we recently moved from Massachusetts to North Carolina... and I am honestly at a loss as to how to begin this process. I don't have any healthcare providers set up yet (we moved one month ago).


Another complication is that it appears that our insurance does not cover genetic counseling or IVF (or any infertility treatments at all - we have BCBS). This is kind of shocking to me, having left a state where IVF was mandated to be covered by insurance companies.


I guess I am feeling overwhelmed and a little scared of what might (or might not) be ahead for us. Wondering if anybody has advice or information to share. Anyone in North Carolina had success arguing for medical necessity for insurance coverage? Or recommendations of providers in the Raleigh, Durham, Chapel Hill area?


Thanks,
A
 
T

triples15

Super Moderator
Hi A,

I would start by asking your husband's CF doc if they have a reproductive endocrinologist that they recommend. Our CF clinic refers all their patients interested in pregnancy to the same RE clinic. They have a lot of knowledge of/experience with CFers so that is an advantage. If you make an appointment for a consultation with an RE they should walk you through the whole process, talk about all of your options, prices, etc. Our RE did the genetic counseling which amounted to having my husband tested and a one brief meeting. As far as the genetics counseling, our insurance covered it, I think perhaps because it was just rolled into another office visit. As far as the CF screening for my husband.... initially our insurance denied it. After a letter from my CF doc stating the reason for the testing and telling them how much money they would save by us not having a child with CF, they covered a portion of it. What a bummer to have left a state that required coverage for fertility.. Sorry!

Good luck to you!

Autumn 32 w/CF

Also wanted to add that our fertility clinic offered payment plans, low interest loans, etc. to help cover out of pocket costs. I also wanted to say that scheduling an appointment with the RE doesn't mean you have to be ready to go ahead with treatments right away. You can just get a feel for the process and learn your options as well as get the ball rolling with genetic testing for you, and other miscellaneous testing they will have you both do. That when you are ready to pursue treatments if and when you are ready.
 
J

John O

Guest
Hi A!!!

I left this same message on CL. You can now find it two places. Message me anytime I would love to answer your questions.

I have a lot of info on the fertility and IVF process as my wife and I went through with this with a successful birth this past October. My first thought is to move back to MA. I am serious haha!! It is so EXPENSIVE but it is so worth it. But we were told at our IVF clinic if you work for a company that is headquarter in MA but work in a different state then the insurance sill has to pay for fertility treatments. In fact when we were looking into IVF we knew insurance was not going to cover any fertility stuff unless someone was infertile. It was crazy that my wife was infertile and not me bc 98% of male cfers are infertile but not me. I am that lucky 2%. So I would have your husband submit semen analysis to see if there are any sperm in there. You never know he could be in that small minority population like me.

So you said you want to get tested for CF carrier status and this makes sense. My wife did get tested and we used Ambry Genetics. Ambry does the most complete genetic test for CF. They look at over 1800 mutations. Here is how they work. They send you out a blood kit and you have your blood drawn and then you send it back to the lab in California. It takes about a month to complete but it is well worth it. Our insurance thankfully covered Ambry if not we would pay a few thousand for the test.

My wife's test came back and she was discovered to be a CF carrier. She was also found to be infertile from a female test that the doctor does. So we were going to do IVF no matter what bc of her fertility issue and now on top of that we have a 50% chance of having a CF child. So we also did IVF with pre genetic diagnosis of the embryo before implantation. But my wife would have never found out she was a CF carrier as her gene is so so rare. You can have your blood tested by the OBGYN office to test for the most common CF genes I think the blood panel encompasses over 90% of the most common CF genes.

So you asked for recommendations in NC for a provider for fertility treatment.........I do not know of any but I know of a great website to use. http://www.sart.org/find_frm.html This website you can search in your zip code for a fertility doctor and even see the success rates of IVF and births. I highly suggest using this site and also setting up multiple interviews with different clinics to see who you feel most comfortable with. As you have probably heard this process is emotional and you want a caring dr!!!

I know I put alot out there and I hope it has helped some. Please ask me any questions or send me a message I love to talk about this fertility stuff :) I will leave you with this..........Never ever give up on your dreams of a family. My wife and I had our backs against the wall with her CF carrier status and her infertility but our dreams did come true and we had our amazing miracle daughter this past October! If you want to read about our journey you can read it all here on my blog post GOOD LUCK!!

http://livingmydreamswithcf.blogspot.com/p/ivf.html

John 28 yr old fibro!!
 
You must log in or register to reply here.
Top