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My last post on this was back in February when DH & I were just starting PGD with IVF ( We have a BEAUTIFUL son ,21 months old with CF). What an amazing, draining, journey it has been. Its a bit soon for me to announce, but I am 1 month pregnant!!! :angel:

My doctor implanted 1 embryo that was completely unaffected and 1 that was a carrier-- (I won't know about twins for a while)

We're amazed that they are able to not only detect affected embryo's, but carriers also. I'll be getting my embryo report Monday and I will share the results, as I remember we had quite a few affected with CF and only 1 unaffected.

I STRONGLY suggest that carrier couples look into this life saving process. Without even having an infertility/IVF benefit through our insurance company-- I was able (with a REALLY informative,convincing letter) to get both procedures covered by our health insurance, almost 100%. Clearly the alternative would have been far more costly for them.

Hope this post will get a few of you to really look into PGD (just type PGD into any search engine along with the name of your state)
Ditto here about having another child. Know there's a 25% chance that our child will be born with CF, but most of the people we know who've had children with CF have had more than one child with it. But PGD and in-vitro is very very cost prohibitive for us. Trying to weigh our options. Could you give us the "gist" of the letter you sent to your insurance provider. I've got a doctor's appointment in a few weeks and want to discuss all this with him and see if PGD is even an option in my area.
I got my embryo repory today, out of 18 embryos:
8 were affected w/ CF
7 were carriers
1 was completely unaffected/ non carrier
2 the tests were inconclusive

The 25% rule definately did not apply here, thank God for modern medicine.

As far as my letter, it was complete and left no stone unturned. I started off explaining CF and the chances of 2 carriers concieving having a child w/ CF. I sent pictures of my son when he was 7 mo. and hospitalized w/ pnuemonia when he got diagnosed. I sent copies of the hospital bills and perscription benefits.

I briefly touched on the ongoing and inevitable needs of a person w/ CF (enzymes, Ursodiol, TOBI, breathing vest, lung transplant) and the financial stress it puts on both the insurance companies and the family-- And worst of all, the sickness and poor quality of life a person w/ CF could face.

I then explained PGD (Which has been around since the late 70's) by cutting and pasting from my center's website the overview of PGD and noted that there are no procedure codes for PGD w/ IVF so this would need to be looked at on an indiviual basis. PGD drops the chances of CF from 25% to approx 1-3%.

I was amazed that the first return reply I got from my insurance company was an approval, no fight, no struggle. When explained in this matter, it only made sense to go ahead with PGD. Everyone has the right to expand their families, why not minimize all possible risks for CF carriers?

My fingers are crossed for all of you- I will answer any other questions you may have.
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.
Hi Sherry 092,
My Husband and I are in the exact situation you were in 3 years ago. We have a boy with CF who is 4yrs old now and want another child. We also have anthem. I have been reading your posts and have taken a lot of your advise to write a letter to anthem to request coverage for PGD. I am a labor and delivery nurse at Yale hospital and even all the expert advice at my job wasn't as helpful as your posts on this chat room! I am so happy for you and your success with pgd. We found the article in the Times that references your case in 2004 and will site it in my letter to the insurance company, I am also going to include all my son's medical bills as proof of the costs of CF. Are you from CT? just wondering because Anthem is different in each state it would help my case if you are. Just thought I'd let you know what an inspiration you are to someone like me who felt so helpless after I found out that PGD was not covered. The times article and your posts on this web page were the first two hits listed on ****** when I typed in "PGD cf insurance coverage" how cool is that?





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