I think I'm gonna try ivf with pgd - advice?

KarenBeth714

Hey ladies -
             haven't checked in on these boards in a few weeks, we went away for our anniversary. I hope you are all having a hopeful cycle. Af came last week and I got so frustrated. So I was able to make an appointment with a top fertility doc in the area ( long island). He had a cancellation and they fit me in. He went over my history ( d&e due to genetic disease - we are both carriers for - so 1 in 4 chance for each pregnancy) and he basically convinced me to start the process for ivf with pre genetic diagnosis right away. I did the initial bloodwork and now DH has to follow through. We were going to try naturally one more time, but then the thought of having another loss is just breaking my heart. So this would be ivf with no diagnosed infirtility, as fortunately, my eggs are looking good and no known issues. This would be purely to avoid the genetic disease we both carry. I am really nervous, as I have heard some stories. Anyway, any advice would be helpful. I'm also nervous about insurance issues, so anyone with ghi ( teacher nyc employee) insurance who has been through something similar, would be helpful. Thanks!

SnobunnieMel

I don't have any answers for you, but may be in the same boat soon. I am a carrier for 3 diseases and we are waiting on DHs results. If he has any matching our RE recommends IVF with PGD as well. Hopefully someone here has some info, good luck on your journey!

KarenBeth714

oh keep me posted @SnobunnieMel ! Finding out we are both carriers just through us for a loop. Whole different ballgame now. Initially, I didn't want to do ivf but a few months post loss and I'm changing my mind and going to give it a try. There is another option I found in doing my research, there is a doctor that can design a single gene genetic probe in Maryland and he can determine if baby has the gene by around 8-9 weeks, rather than waiting for cvs results which could be 15-17 weeks ( depending on condition and how cells grow in a dish I was told) If you want the info for that, it's another option. We are going to use it to fall back on in case I get pregnant naturally or ivf isn't successful and or we get frustrated/ run out of insurance coverage. Good luck, I hope your dh is carrier gene free! Ours is super rare and all the docs were kind of surprised we both had it. sigh.

SnobunnieMel

Good luck to you too @KarenBeth714
i was devastated to find out since I am not in the ethnic group they worry about so each one alone carried a 1/300 chance and I have multiple. (Story of my whole TTC journey). Hopefully it's isolated to me. I do need to warn my brothers now though since they are both starting families soon and may be carriers as well. If we both have it I don't want to risk anything naturally. In my life a 25% chance would be a certain since I am the .001% of everything and it happens. 

KarenBeth714

Oh man, I know what you mean. We are both in the ethnic group that they worry about ( both eastern European Jews) but ironically the disease we carry is not known as a threat for our ethnic group. We have no clue where it came from. We are going to find out with the other doctor who is doing our genetic probes. so it's like 1/40,000 for this disease, and less chance we were both carriers, and then the 25% chance our baby would have it, and it did. 2016 was not our year.

BornReady

I am currently in the midst of IVF with PGS (testing for chomosomal issues). No PGD, as we have no known genetic carrier issues. We are completely covered for IVF via Blue Cross, but had to pay out of pocket for each embryo tested. I think PGS is pretty standard to be out of pocket, but I'd be curious what insurance would cover for known carrier issues/PGD. 

I have overall found the IVF process to be more emotionally challenging than physically. However, I am pretty grateful that it's even an option, science has been good to me. What are your concerns with the process?

KarenBeth714

Thanks @BornReady I am going to call insurance tomorrow and ask those specific questions. They told me "three cycles" but doesn't clarify the coverage of pgd. My concerns are that it will be stressful on us with all the appointments and the egg retrieval process I'm nervous about, wondering about how long it will all take being that I want to get pg as fast as possible.. but even though I know that doesn't make much sense if all I want really is to be assured we have a healthy baby. I'm also worried about it not working and running out of coverage and or not having any healthy embryos that make it. So many concerns, but I guess we'll never know unless we try.

BornReady

@KarenBeth714 The timeline is the hardest part for me of this process. From starting stim meds to ER to waiting on PGS results to birth control pills to FET will be about 10 weeks in my case, not including the TWW after transfer. It is a painful wait for sure. In my case, I keep reminding myself that the likelihood of getting pregnant on my own is slim, so this is at least an improvement over that.

As far as the appointments, it is a process. For monitoring my clinic is open super early in the morning and you need to be in by 9AM for blood and ultrasounds. You are literally in and out, I think I maxed at like 10 minutes between doing both things, a total well-oiled machine. 

KarenBeth714

Thanks for sharing. I think the time line will also be very hard for me. Each month that goes by I'll be wondering if I could have been pregnant. Oh and I'm also worried about the hormones they give for egg retrieval and worried about gaining weight ( more weigh than I already gained from the years ttc stress!) Which I know is so superficial, but whatev

KarenBeth714

Just got off the phone with the financial billing person at the doctor's office. Even with my 75% coverage it's probably going to be between 5,000-8,000 depending on a few factors. DH freaked out and said we don't have the money. Now I'm freaking out, fearing another loss and thinking it's worth it.

AandDM2014

There are companies that specialize in IVF financing. I personally used ARC, and they were really nice and very quick with the approval process.

For my first stim cycle I started on 9/15 with a cycle day 2 or 3 appointment (not sure, I didn't write down which), took bcps until 10/13 due to needing surgery to remove a polyp (would have been a week sooner if I hadn't needed that surgery), started injections on 10/17 and had retrieval surgery on 10/30. I didn't do PGS (though now of course I wish I had), but you have to wait until your next cycle to start the FET process, which for me is about 2 weeks of bcps, then 3 weeks and 4 days of body prep before transfer, then the 10 day wait afterwards. If I were to do another stim cycle with PGS and FET, it would probably take about 4 months from the start of a period to the beta. My clinic may just drag things out a lot though.

KarenBeth714

WOw, helpful to know - I know they did mention to me something about a "rush order" costing $700 extra, but so that they can get more done under the coverage of one cycle ( because I only get three) don't know more details and it may have to do with the pgd - but it was mentioned and recommended.

caseyw8784

@karenbeth714 - DH and I have to do IVF with PGD due to me being a single gene disorder carrier with a 50% chance of passing a mutation on to a child.

First thing, I would appeal to your insurance. Ask your doctor (is it an RE?) to write up a statement that the PGD is basically a preventative measure, and also do some research into the disorders/diseases that you and your husband are carriers for. Find out how much a lifetime of care would be if you had a child that suffers from one of them; since insurance would have to pay for that care, often the $25,000 price tag of IVF can be far far less (in my case, a lifetime of care would surpass 2 million dollars.) Sometimes the insurance companies will give special consideration. We had to appeal, and were successful to get the entire IVF covered!

Depending on what state you live in, some states have mandatory partial coverage for IVF, and also have financial assistance programs and/or no interest loans. 

The IVF process with PGD does take longer than it does for "regular" IVF...but don't let that get your hopes down! I too want to get pregnant as quickly as possible, but knowing that everything that I have to wait for is going to give me the most healthy embryo possible, is tempering my impatience. 

First thing (and I'm not sure if this step was specific to my case or is the same with all PGD probes) they're gonna need to get DNA samples from your immediate family. Meaning, your mother and father, and your brother, and any other siblings you may have. I've heard that some labs only require the parent's DNA. They probably will need samples from your husband's parents as well. The genetic lab will have to isolate the location of the gene with the disorder, and will use that to build a "genetic probe" to test embryos against.

In my case, I was adopted as a baby, and i (luckily) am in reunion with my biological mother and sisters, but they have been less than cooperative with this, and what should've taken 3-4 weeks to get them tested and to get their results, it's been almost 6 months (this is NOT normal, so please don't think it will take this long for you!!!!)

Once the results are in, the lab needs 3-4 weeks to build the probe (in my case; I'm not sure if other disorders or multiple ones take shorter/longer to build). THEN, I can start the IVF process. Once the eggs have been retrieved, they will be fertilized, biopsied, and the results should take about 10-14 days to get back. Then, any normal ones will be transferred back by FET. Then, wait the 2 weeks for a beta, and if a BFP, yay! get to proceed normally. If a negative, hopefully there will be other frozen embryos left over and go immediately into another FET.

I know how daunting it is at first with all of the unknown...also, this is just my experience and timeline. I would call up your doctor and ask EXACTLY what they will be doing for yours. Like i mentioned earlier - it could be shorter!! I was diagnosed in February and started the process immediately. If my biological family didn't have their heads up their you-know-whats, we would have done the IVF cycle late April-early May, and I could've easily been pregnant by now!

Hopefully it will only be a 2-4 month process for you...!

ETA: holy hell, I am so sorry for this freaking novel! once, i started typing, it all just spilled out! :d

KarenBeth714

@caseyw8784 No apologies needed! Your novel was super helpful. I am going to call tomorrow and ask these questions. I never considered comparing it to the cost of lifetime of care for a child with this disease. It can be very severe and fatal in most cases.
DH is going his for his part of the testing and semen sample.  We already had the genetic carrier blood work done through another doctor with dna samples from all of our parents, for other testing ( basically an early cvs in case I were to get pregnant naturally) I'm wondering if they can use that. I will have to ask. If you want any info on this doctor, he's in maryland and hes the only one who can do this type of testing, so it's good to have as a back up to the Ivf.  I want to know the exact or approximate timeline so badly! I have so much going on in Sept/ Oct that I NEED to know. Making me crazy!!
Good luck with everything. Keep us up to date on your progress as well! It is worth it to know that you have a healthy baby.

caseyw8784

@KarenBeth714 - glad it was helpful! my RE was actually the one who told me that insurance sometimes might reconsider with something like this when you present them with the ivf bill vs lifetime of care cost. she said they really like to give out as little money as possible, so it sometimes works in our favor! haha.

it's good that your parents already have done the testing. Getting my biological family tested is what is taking so long. Once they know whose DNA they'll need, I think they will just send out one of those swab kits, so that part shouldn't take too long.

It's funny, you saying that you have so much going on this fall - I naively thought that we would have done the IVF cycle and testing already, so I planned nothing for this summer and a bunch of small weekend trips this fall. Now it's looking like I'll have to cancel/postpone some of those if/when we can finally move forward! oy!

KarenBeth714

oy vey - just checking in tonight. Got some bad news.. we are carriers for another disease. We are going to test for two diseases. Still can't get answers on how much it will all cost. Frustrated beyond belief. In the stages of getting parents dna and previous test results over to the other company who is doing the genetic probe design.

roxgibbons

@KarenBeth714 I'm sorry to hear this. It's a rough road and I feel like there seems to be always something we are dealing with. I hope you get all your answers soon snd can figure out next steps. 

RiverSong15

I'm so sorry to hear that @KarenBeth714. Hopefully, though, this means you have an even greater chance of success once you screen for a healthy embryo! Hurdles like this always suck though, so hugs for you!

DungeonTrollMel

@KarenBeth714 oh no. I am so sorry. I'm sure that's the a horrible thing to have to absorb when this has already been drawn out and stressful for you both. Hopefully things stay on track 

brooklyngirl18

@KarenBeth714 ugh I'm sorry to hear the bad news. I hope the financial aspect get straightened out and you get all the results back quickly. hugs

KarenBeth714

Thanks guys - I'm not getting clear answers on whats covered or not by insurance. Thinking about getting a lawyer. I don't know if I even want to do this any more.

NewMommyCoop

@KarenBeth714 I'm sorry you got bad news. Thinking about you.