Cystic Fibrosis Screening

mamabear7

I'm not sure if this is normal across the country or not, but my RE office just called to tell me they are now recommending all patients considering treatment to have the Cystic Fibrosis screening.  Of course the nurse weighed the options and why people choose to have the screening vs. not.

Did you have the screening?

kimarino13

Yes.

Dr.Loretta

Yes, it wasn't optional. We found out that DH is a carrier. Not that it matters much in our situation, but it was good to have that information.

BRSaugust20

Before we started TTC, since we are Ashkenazi Jews, we had DH undergo that panel as well as CF.  He wound up being negative for everything.  If he was positive for something, I would have been tested and as long as I was negative we would have been fine.   In addition to the blood work, we also met with a genetic counselor.

Chels0504

We did not.

madelyn07

We did not have this done.

MrsWood1228

Yes. Insurance paid for it. So I fortunately didn't have to weigh the pros of having the test vs. the financial cons. We both tested negative.

I'd highly recommend it. Especially if you're not OOP.

georgiagirl1212

CF screening is optional at my RE's office for those with Northern European/Scandinavian backgrounds.  I chose not to have it, partly because my DH is almost 100% Italian and at low risk to be a carrier, and partly b/c we are paying OOP and that screening cost quite a bit.

ladychicago

Yep.    it was included in our pre-IVF bloodwork

K8-B

I had the b/w for the test. It cost me $800 just for CF test. Make sure your insurance covers it!

yodasmistress

I was tested for 47 variations at my very first work up in 2005.  My husband was tested for 95 variations at our one-day work-up at CCRM last month.

mamabear7

When I called about my benefits I was told in regards to IF specifically, all labs, ultrasounds, pre treatment testing were covered as we already met our deductable.  So I guess I will have to ask again when I'm in there today if its going to be covered.

Peanut1334

Cystic Fibrosis was part of the genetic make-up pre-fertility treatment screenings my doctor ordered. I found out I was carrier for it, DH is not. Therefore there is no way we could pass it onto a child.

taraandkyle06

yes

miesl

I strongly recommend it.

CF is a nasty disease.  In addition to the lung issues, and digestive issues, there are IF issues (and frightening OOP medical costs).  There are a number of ladies on the board who are TTTC due to CF.

My DH has it.  I'm a carrier.  It sucks.

*jenjen*

Yes, we did it.  It was expensive, but worth it because we found out that we are both carriers.  Like pp said, it is a terrible, nasty disease that we absolutely dont want to pass on to our children...so now we're doing IVF/PGD to prevent it. 

And btw...we have no CF in our families...so it was a huge shock to get the news that we were both carriers...you just never know.

nikinikinine

I go in for mine next week.

KarlingG

Do it.

 I wish we would have been told about it a couple years ago. I have a 17 month old son with CF.  I am very thankful to have him - I always wanted to be a mom, but I never wanted to be a nurse.  On top of medical costs around $12,000 a month (before insurance) daily treatments, and medicines, it is hard to stay strong all the time knowing that it is our fault that our Son will battle this genetic disease all his life.  We have absolutly no family history and had no idea we are carriers. 

We are now working on IVF with PGD to have another child. 

It is worth it - even just for piece of mind.  Good luck!

debdebtx

Yes, because I am of Jewish heritage.  I am not a carrier.

Mainer-in-Texas

Yes. I recommend it it. A white couple that has not been tested for the gene has about a 1 in 2500 risk of having a baby with CF. I have CF, and I have an extremely mild case of it, but it is still a huge PITA and really impacts my daily life. And now I'm suffering from IF because of it.

My husband was tested for 97 variants and it came up negative. Keep in mind, though, that there are thousand of variants, although the top 64 most common ones make up about 80% of the total mutations, so, if you pass that test, your risk of having a baby with CF drops dramatically, but not completely. 

schoolsoutbride

I did b/c it was one of the few things insurance would pay for.

rachel06

Yes. I had mine in spring 2008 because we knew we were going to TTC. Never imagined we would be where we are now. My insurance covered it & they don't really cover anything IF related.

MrsHall44

It was optional at my RE's office so we didn't do it.

caden

Yeah we had it. it was standard. I found I'm a CF carrier, even though I have no known family history of CF. DH isn't a carrier so it wasn't an issue, but I'm sure glad they checked!

Dragonfly1226

I did it. The testing is standard at our REs office.

jloz

I did because my father's side is Jewish. It was part of the pre-fertility treatment screenings my doctor did. Turns out I am a carrier (no idea how since it is no where in my family...that we know of). Luckily, DH is not, so it's not an issue.

crysbena

I did not get an option my RE just did it and it was very pricey... like 1200 and I had to pay oop b/c my ins wouldn't cover it.