I'm sure you get this all the time, but I'm starting IVF and have Q's :)

JaimieLee · August 2011

Hi ladies, I hope it is ok that I post here, I am in a unique situation and there really isn't a board appropriate for me. I typically post on PAL, but most of them have not gone through IVF. I am not IF, so those boards are out too, I'm hoping since you all are SAIF, I won't offend you with my questions (or my siggy). DH and I found out we were both carriers of CF when we were PG with DD. We are very blessed to have her in our life - she's complete awesomeness - but she does have CF and in order to protect her health and still expand our family, we are opting to do IVF w/PGD (people with CF should stay at least 3 ft apart, impossible for siblings - they tend to pass the infections back and forth, resulting in lower life expectancy). We could play the odds and conceive naturally, but I'm not a huge believer in odds these days, haha. Anyway, we have our initial consult next week. Any specific questions I should ask? If you have done IVF, with or without PGD, I would love to hear your experience so I know what to expect. Also, this will be completely OOP, so some realistic feedback about costs would be very helpful. I have heard anywhere from 15k-25k, but that's a big swing:) Thank you!!

krissyh21 · August 2011

I know Hannah and Ben did IVF w/PGD so if she does not see this particular post, you can page her.

As for cost for IVF, it can vary greatly by clinic. Ones around me charged anywhere from 8,000 to 12,000 and that did not include additional testing. The price included u/s and blood draws for monitoring, egg retrieval and transfer. Drugs cost extra. Since you have no known issues with conceiving the amount of drugs you will need will be on the lower end. I needed max dose of drugs and the cost was about 2k per cycle, but that was a really high dose of everything.

Your daughter is beautiful!

Good luck with your cycle.

DavezWife · August 2011

Hi and welcome. We welcome lurkers and other folks no prob! lol.

I do not have personal experience with PGD, I believe there's half a dozen of families that have done it around here? The one that comes to mind was for a heart condition, not heard of any CF gals around here, but there could be lurkers....

anywho, the one thing I *do* know about it is that it's being "phased out" or replaced by CGH. A quick google search found me this:

https://www.in-gender.com/cs/forums/t/13367.aspx

but it's just a bunch of opinions and info to weed thru.

As for OOP, I can relate bigtime. We were accepted into a warranty program by the skin of our teeth, and it ended up being a VERY good decision for us, simply b/c I cannot seem to stay pregnant. Younger couples have even better warranties sometimes, even some with 100% back if you don't get a live baby. I bought meds "underground" (freegaragesale is pretty reliable, but risky none the less) and had amazing friends donate to me as well. I fought every insurance denial, and fought for what I thought I needed. When I was submitting my "case" to different docs, I made an easy to review spreadsheet and case history of my ART cycles, they LOVED that. You might want to put together something like that with your situation, if you think you might be shopping around a little bit.

that's all I can think of.

Best of luck, your daughter is BEEEEE-u-tiful!

Ali212 · August 2011

I did PGD with 3 of my 4 rounds of IVF. I didn't have any of the known issues you do so am not sure I'll be as helpful with questions to ask. We did PGD simply b/c our primary assumed (assumed only b/c it's hard to diagnose) dx was bad eggs. Our IF costs were all OOP so I do have a very accurate sense of what we paid but I should caveat that we went to a very expensive private clinic in NYC so I think my numbers are somewhat skewed. Anyway, for each round of IVF (including ICSI, PGD and monitoring appointments), we paid $35K. I believe the PGD portion ran around $7.5-8.0K (if I remember correctly). In addition, I paid OOP for all of our meds and I needed super high doses of the stims (for a lot of days) so spent close to another $10K for the meds each cycle as well. I know many of the large teaching hospitals in NYC (Cornell, Columbia) are much cheaper (although meds are usually pretty much what they are) and they obviously have very good reputations as well.

Hope that's helpful. Congratulations on your daughter and good luck with your IVF!

JaimieLee · August 2011

Thanks Davezwife! I think I recognize you from TTCAL from last year, or maybe I am more of a lurker than I thought;). I am definitely going to try to fight the insurance, there is one CF mom on another forum who was able to have it covered. I have all the NICU and surgery bills (insurance was billed over 700k) as well as the monthly bills for all her medication and the recent bill for her Vest (16k billed to insurance). I'm going to make the argument that 25k is cheaper for them to cover in the long run, kwim? Its worth a shot anyway. I looked into grants and programs, but i dont qualify since i already have DD. CF is pretty rare and PGD is still a bit controversial in the CF community so there aren't a lot of resources there for us. How long from your initial consult did they do the transfer? I just went off BC last month, not sure what they will do as far as regulating my cycle. The appointment is on the 9th, and CD 1 should be sometime around the 17th. I hate not knowing what to expect! I mean, I know we will discuss a plan at the appointment, but part of me wants to know everything right this second, ugh. Thanks again!

JaimieLee · August 2011

Ali212:
I did PGD with 3 of my 4 rounds of IVF. I didn't have any of the known issues you do so am not sure I'll be as helpful with questions to ask. We did PGD simply b/c our primary assumed (assumed only b/c it's hard to diagnose) dx was bad eggs. Our IF costs were all OOP so I do have a very accurate sense of what we paid but I should caveat that we went to a very expensive private clinic in NYC so I think my numbers are somewhat skewed. Anyway, for each round of IVF (including ICSI, PGD and monitoring appointments), we paid $35K. I believe the PGD portion ran around $7.5-8.0K (if I remember correctly). In addition, I paid OOP for all of our meds and I needed super high doses of the stims (for a lot of days) so spent close to another $10K for the meds each cycle as well. I know many of the large teaching hospitals in NYC (Cornell, Columbia) are much cheaper (although meds are usually pretty much what they are) and they obviously have very good reputations as well.

Hope that's helpful. Congratulations on your daughter and good luck with your IVF!

thank you for your feedback! We are going to RMA in Morristown (about 30 mins west of NYC), so I think the prices will be in the same ballpark. Do you mind sharing the clinic you went to? PM me if you feel more comfortable. A good friend of mine went to RMA for both her IVFs and highly recommended them, but I am certainly open to other clinics.

Ali212 · August 2011

JaimieLee:
Ali212:
I did PGD with 3 of my 4 rounds of IVF. I didn't have any of the known issues you do so am not sure I'll be as helpful with questions to ask. We did PGD simply b/c our primary assumed (assumed only b/c it's hard to diagnose) dx was bad eggs. Our IF costs were all OOP so I do have a very accurate sense of what we paid but I should caveat that we went to a very expensive private clinic in NYC so I think my numbers are somewhat skewed. Anyway, for each round of IVF (including ICSI, PGD and monitoring appointments), we paid $35K. I believe the PGD portion ran around $7.5-8.0K (if I remember correctly). In addition, I paid OOP for all of our meds and I needed super high doses of the stims (for a lot of days) so spent close to another $10K for the meds each cycle as well. I know many of the large teaching hospitals in NYC (Cornell, Columbia) are much cheaper (although meds are usually pretty much what they are) and they obviously have very good reputations as well.

Hope that's helpful. Congratulations on your daughter and good luck with your IVF!
thank you for your feedback! We are going to RMA in Morristown (about 30 mins west of NYC), so I think the prices will be in the same ballpark. Do you mind sharing the clinic you went to? PM me if you feel more comfortable. A good friend of mine went to RMA for both her IVFs and highly recommended them, but I am certainly open to other clinics.

I know RMA; they're prices are more in-line with the rest of NYC clinics so definitely below what I experienced (even though IVF is crazy $$ to begin with everywhere). I PM'ed you my clinic name but you may also want to explore Cornell/Columbia as well since they are the two NYC clinics that usually come to mind for IVF. Happy to help if I can in any way further.

hannah&ben · August 2011

Hi. In the summer/fall of '08 we did an IVF cycle w/ PGD that resulted in a gorgeous and amazing little boy name Henry. He just turned 2 this June.

I'm happy to share anything and everything about our experience. Really, I'm an open book.

I do wish to be honest though, and let you know that the PGD part of our cycle actually failed and my son does in fact have the genetic defect (and subsequent cardiac abnormality) that we were trying to avoid.

I'm not telling you to scare you as our situation is not the norm, more often than not it works the way it's supposed to.

I just want you to know so you can decide if you'd really like to talk about our experience. In the past I've found women to no longer be interested hearing about it from me once they know our outcome.

My email is powers dot hannah at gmail dot com. I'm happy to chat any time.

Best of luck to you!!

Hannah

hannah&ben · August 2011

I just read Davez's reply... I don't mean to say she's wrong, but, she's wrong Love you Davez!!!! You know I do!!

PGD like you would need and like I did is different from the kind of PGD that is being replaced by CHG. That is a 'broad' thing where they're looking at whole chromosomes for abnormalities. For you, you're looking for a known single gene defect. They're 2 totally different things.

hannah&ben · August 2011

Last post, I promise!

I saw you asked about time from initial consult to transfer: for the kind of PGD you will do, they need to create probes to test your embryos which takes up 12 weeks - that all has to be done before they'll start any part of your cycle. I would assume at least 4 months minimum from initial contact. I got in contact with my clinic in February of '08 and cycled in Aug/Sept '08 which was the soonest we could make it happen.

JaimieLee · August 2011

Thank you Hannah!! You answered a lot of my questions. As for PGD not being 100%, I realize that and we certainly would deal with whatever outcome. We already have a CF kid, so we know what to expect and in the long run it's not the worst thing in the world to have another (by any means). But I would feel more comfortable knowing we tried everything available. There is no guarantee when it comes to kids anyway. I would much rather have a kid with CF than have a kid who is an assshole, lol. At least there is a known genetic mutation that causes CF;) I had no idea of the 12 weeks yo create probes, the woman on the phone told me to expect 4-6 weeks. But then again, she's not a DR. Do you mind if I email you after the consult to clear up any questions I may have? I think it's BS btw that people wouldn't want to talk to you further about pgd knowing your situation. I think it actually helps to know there are other, different than imagined outcomes. I get the same reaction when I talk about my CVS results for DD to others who are going through it. No one likes to hear that sh!t happens. The one thing I have learned is that I can handle sh!t (whole other meaning when you have a kid with CF, haha). Thanks again!

hannah&ben · August 2011

JaimieLee:
Thank you Hannah!! You answered a lot of my questions. As for PGD not being 100%, I realize that and we certainly would deal with whatever outcome. We already have a CF kid, so we know what to expect and in the long run it's not the worst thing in the world to have another (by any means). But I would feel more comfortable knowing we tried everything available. There is no guarantee when it comes to kids anyway. I would much rather have a kid with CF than have a kid who is an assshole, lol. At least there is a known genetic mutation that causes CF;) I had no idea of the 12 weeks yo create probes, the woman on the phone told me to expect 4-6 weeks. But then again, she's not a DR. Do you mind if I email you after the consult to clear up any questions I may have? I think it's BS btw that people wouldn't want to talk to you further about pgd knowing your situation. I think it actually helps to know there are other, different than imagined outcomes. I get the same reaction when I talk about my CVS results for DD to others who are going through it. No one likes to hear that sh!t happens. The one thing I have learned is that I can handle sh!t (whole other meaning when you have a kid with CF, haha). Thanks again!

Absolutely, feel free to email any time! I love your attitude about all that's on your plate, it's wonderful and will serve you well through this process!

You know, maybe things have gotten better/quicker since we did all this. Or maybe for CF it just doesn't take as long. We were told 6-12 weeks and it def. took closer to 12. This was after a month or so of testing and waiting to be 'accepted' by the genetics lab. So, we were 4 months in before we started the actual IVF cycle (which takes about a month itself). It wouldn't surprise me at all if they've been able to streamline the process a bit so it's not as lengthy! It has been 3 years.

LOL @ handling sh!t

Very best of luck with your consult and please do feel free to contact me here or through email. And keep us posted!

Hannah

naflmj · August 2011

I don't have experience but my SIL is going through this due to Huntington's. Their clinic in Philly gave her a considerable discount because they are OOP (though I think most people in the area are)...I believe she is paying 8k for the IVF and PGD, so basically getting the PGD for free, they are also covering her meds. Not sure how she worked that out but it's worth asking about any discounts that maybe offered. It takes about 12 weeks to get the probes ready for the PGD so her initial consult was in August and they plan to start to cycle in November.

DavezWife · August 2011

hannah&ben:

I just read Davez's reply... I don't mean to say she's wrong, but, she's wrong Love you Davez!!!! You know I do!!

PGD like you would need and like I did is different from the kind of PGD that is being replaced by CHG. That is a 'broad' thing where they're looking at whole chromosomes for abnormalities. For you, you're looking for a known single gene defect. They're 2 totally different things.

you would know about this stuff much better than me, no worries!

Want a personalized experience?

I'm sure you get this all the time, but I'm starting IVF and have Q's :)

Re: I'm sure you get this all the time, but I'm starting IVF and have Q's :)

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