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Cystic Fibrosis Message Board


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I am also relieved to have found this board. My husband and I are both CF carriers with no famliy history. We found out through blood tests early in my pregnancy last year. I had a CVS test in my first trimester and was happy to hear that our baby girl was not only [B]not[/B] affected but not a carrier either. She was born in October and is the love of my life as I am sure you all understand. We are now thinking of having another baby and recently started looking into PGD. I was excited to read the post from the woman who convinced her insurance to cover the costs. I am in the same boat with no IVF insurance coverage through my carrier. Any more tips on the insurance letter writing are welcomed. I was also wondering more about the actual PGD process. I have been briefed on the general plan of events but I am interested in hearing from someone who has been through it as I am truly a rookie and pretty clueless about a lot of the details(drug side effects, time table, etc). Thank you.
Hi, I'm the one who got the insurance company to pay for PGD and am the proud mother of a 3 yrold boy w/CF AND 7 month old little girl that is not even a carrier! Man do I love science!!!

The PGD process is exactly the same process as if you were an infertile couple doing IVF, just with 1 extra step. There is ALOT of prep bloodwork, classes, planning your cycle calender ,etc- Things have changed a little since I went and now most of the fertilization drugs are in the "Epipen" form- just like what diabetics use, its not a regular injection you give yourself, its like the click of a pen.

My process was a few (2 or 3) weeks of approx 5 injections a day in my stomach or legs. Then frequent visits for bloodwork to measure your levels. Then a few more very precisely timed injections and then they do the egg retrieval, in which you are put to sleep, it didn't hurt too much, a little dicomfort. Then they take the eggs, and along with your husbands sperm, create embryos. The PGD part comes in when the embryos grow to 8 cells, they are able to extract 1 of the cells and determine if that embryo has CF, is a carrier, or not a carrier.

Then you and your doctor decide based on your embryo report what you have, what you want to transfer and what you want to freeze. The transfer of the embryo into you is an amazing, painless experience. One of the most (physically) difficult parts is the Progesterone Oil injections that go on for approx 1 month- your husband needs them to give you (they'll teach him on an orange). Lots more blood work and wallah- you're pregnant!

I did not have much in the way of side affects from the drugs, just soreness at the injection site- fear of needles, and anxiety about getting pregnant on the first try, that the process worked right, etc.

It was one of the most amazing experiences of my life :angel: - totally worth being a human pin cushion! :eek:

I have a post with details of my letter to the insurance company- its dated 8-10 and its called PGD and insurance coverage, approx 10- 12 down from this post.





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