Decisions, Decisions

I got a call from my nurse earlier today, and the cycle is officially dead before it began.  Again.  After having said that the pre-implantation genetic diagnosis (PGD) probe needed to be done before I started shots, my doctor switched up on me (again) and said that he won't let me start pills until it's done.  This is at least the second time he's switched things up on me, after originally saying that he would prefer a day 5 biopsy instead of a day 3 one and then changing "would prefer" to "will only do."

My nurse is also pissed at this point.  She's pissed at the gene lab for putting her in the middle and telling her to call me and tell me they needed parent samples rather than calling me themselves.  She's also pissed at the gene lab only saying at first that they wanted samples from my parents and then later saying they actually wanted samples from both sets of parents.  She's also pissed that I did what I was supposed to and that other people not doing their jobs is what is preventing me from cycling.  So at least I'm not the only one that's pissed.  She and I were kinda yelling to (and specifically not *at*) each other on the phone today since we were both upset.

So where does that leave me now?  Well, for one thing, swinging back and forth between numbness, tears, and anger.  Especially with getting the final word from my nurse, it's a good thing I had called in sick today (I'm basically ok, but running a bit of a temp and just feeling crappy), because I would have had a hell of a time holding it together for clients. 

It also leaves me with a major decision to make, about whether to cycle in one month or three, and I'm interested in opinions.  DH told me it was my decision and that he was ok either way.  Two months just isn't an option because of an event at the end of June that DH and I are running. 

If we cycle in one month, we have to have the probe done (which takes 3 weeks after they receive the samples from all 4 parents) by April 21.  Overnight FedExing of the sample kits each way, but I'm not going to have the last address until tomorrow at best.  I'm scared of the probe not being done in time and having to go through this emotionally again.  Cycling in one month would also mean missing something at the end of May that is fulfilling to me.  I've been told my friends will make it be ok if I choose to miss it, but it's something I get a lot out of and a chance to see friends I rarely see.  Cycling in one month would also make it possible to get a second cycle in before my plan year ends on 9/30 (DH's plan year is 1/1 to 12/31).  I have an out-of-pocket max of $3000 and an employer-paid deductible of $1500.  This year, we put the other $1500 on DH's flex spending account both so that we didn't have to pay taxes on it and so we had it all at once instead of having to save it up.  For a cycle after 9/30, we would need to either pay the $1500 between deductible and out-of-pocket max by gathering it together between 9/30 and the end of the year or by waiting for that next cycle until January 2013 so that we could have a new year's flex spending account.

If we cycle in three months, I don't have to miss my May event (although I would miss it next year if the cycle worked, but then I'd miss it less because I'd have a baby), and I don't have to be scared of the probe not being completed in time.  I would start shots while DH is at or just coming back from a curling trip (yes, in the summer), but I would be about at or already at the beach with my family, and several of my cousins are/were nurses (one's a doctor, but I dunno if he'll be there).  *Insert Smithers-like tapping of fingertips together*  I would have to wait longer to cycle, though, and I don't think there would be any way to get another cycle in before my insurance plan year ends.  So IVF #2 would entail either waiting until January or coming up with $1500.  Which I know isn't an astronomical about, but still.

I don't need to make a decision right away, but I do need to make it soonish since I need to buy plane tickets if I'm going to the thing in May.  I'm working on getting the sample kits out to the parents right away either way, to leave myself that flexibility, although if it takes long to get those back, that'll make the decision for me.  It feels like the two main things driving me right now are fear of the probe not being done in time for waiting just one month and not wanting to miss the May event.  What do y'all think?

I Feel Stupid

I've been working really hard to not think this cycle would actually happen.  Yeah, turns out that was epic fail.  So now I feel stupid for not having been better at protecting and hardening my heart.

Remember me saying on Thursday that the pre-implantation genetic diagnosis (PGD) lab would now have 3 weeks and 4 days to do what should take 3 weeks?  Well, apparently the lab didn't feel it necessary to tell me that they would *definitely* want samples from all 4 of our parents.  Before it had been that they "might" want the parent samples.  So we have to have the lab FedEx collection kits to the 3 non-local parents (hey, Moms, you two have packages coming!), have them swab the insides of their cheeks, and take the packages to FedEx (or get them picked up) to be shipped back.

Even with overnight shipping each way and samples being taken immediately, that's Friday (if parents get an early enough delivery on Thursday) or Saturday.  And the lab sounded like they wouldn't deal with weekend deliveries until Monday.  And we won't have one of the addresses we need until tomorrow night at best, so that one can't go out until Thursday's mail.  And the probe takes 3 weeks to make.  And to be able to do this cycle, it would need to be done by no later than Saturday April 14.  And my fertility doc actually would want it to be fully made before I start pills.  Which I was going to do this Sunday, since I had been told that I could start the pills before the probe was done, as long as the probe would be done by the 14th.

I could just scream.  I already have fallen apart crying multiple times.  What upsets me the most is that I started trying to get things going with the lab on February 10.  That's when I gave them my insurance info.  I found out on about February 20 that the lab doesn't request authorizations and I would need to do it myself.  After a lot of being passed around, I reached the person I needed with insurance on February 24, and she called my clinic's business office that day to get what she needed.  She finally figured (after multiple calls) that she wasn't going to get a call back and worked around the business office to get the authorization fixed on March 14.  If the woman from the business office could have been bothered to do her job and call the insurance company back right away, I WOULD NOT BE MISSING MY CYCLE!!! There would have been time to get the samples.  Hell, I might could have taken a sample kit to Costa Rica with me and saved the lab some FedEx fees!

Instead I'm in the position of trying to decide whether I want to wait 3 months to cycle or miss one thing or another that's very important to me.

Whew

I heard back from my nurse today.  She got ahold of the PGD lab, and she now has orders for the sample processing.  Because of stuff not being fully open over the weekend, we'll be going in to give samples on Monday, and the lab will get the samples from my clinic on Monday.  That means they will have 3 weeks and 4 days to create a probe that takes 3 weeks to complete.  If nothing goes wrong.  Still nervous, but not quite as scared.

Keep Calm and Carry On

I've been not-quite-almost-trying-desperately-to-keep-from-panicking for much of the past week. 

Before I left for Costa Rica, I was calling the PGD lab and the fertility clinic and then calling around to insurance trying to get the auth changed from the California PGD lab to the Maryland one.  The Maryland lab was telling me the fertility clinic was supposed to submit the changed auth because they don't get auths from insurance even though they do take insurance payments.  The fertility clinic was telling me they had done their part and that the PGD lab was supposed to get the auth and that if they didn't than I was supposed to.  The insurance company was saying that the fertility clinic was supposed to do it.  And so on. 

I wanted to get it done before I left so that DH and I could get the samples submitted and the probe could be made, since it takes 3 weeks if nothing goes screwy, and I started CD 1 for the cycle before our treatment cycle the Saturday before we left.  Finally, the Friday before we left, I reached G in the local office of the care management division of the insurance company.  She said she would get it taken care of by the Monday before we left.  I didn't hear back from her that day, but I had so much to do getting ready that I had to just go on faith and hope it was getting done.  Yeah, right.

Fast-forward to getting home, and a day or two after getting back last week, I reached G again.  She hadn't been able to get a call back from the person at my clinic that she needed to talk to.  She wasn't going to be in the office Friday and would get back to me on Monday.  Yes, Monday that's a week and a half before CD 1 of our treatment cycle.  On Monday I couldn't get ahold of her, and yesterday she said she still hadn't heard back after bugging the woman at the fertility clinic again.  I explained the time crunch, and she said she was going to talk to her boss to see if she could make it happen without the fertility clinic calling back.  Later that day I was told that she could, and this morning she called me with an auth number.  Whew.

So now I can call my clinic and be able to go in tomorrow with DH to give our samples, right?  Wrong.  There are no orders on file for what to test for, since the Maryland lab didn't contact my nurse to give her that info.  My nurse called me again today (we also spoke yesterday after I called her in my not-quite-almost-trying-not-to-panic) to say that she's going to make a pest of herself with the lab until they tell her what they need from the samples.  Every day that ticks away has me more freaked out, though, even while I celebrate having the auth switched. 

If I can't cycle this month and I know that within the next week, I can't cycle one month from now unless the nurse agrees to use extra pills to move the cycle by a couple weeks, which she wasn't keen on.  I can't cycle 2 months from now unless she agrees to use extra pills to move the cycle by about one week.  So missing this opportunity could mean waiting 3 more months.  In both cases, this is because of things I already committed to.  I'm trying not to commit to much right now because of the possibility of treatment cycles, but how do I find that line between being available no matter what changes and putting my life completely on hold?  If I can't cycle this month and I find that out sometime after I start the pills, all bets are off as to timing because I'll have to completely figure out again when my CD1's will be for the upcoming months.

But of course I keep calm.  Right.  Or at least I carry on.  That's all I can do.

This Roller Coaster is Making My Stomach Hurt!!

So last night I was jumping up and down and crying and wanted to frame the approval letter (especially after having gotten one the day before that extended the amount of time they had to decide further than it had already been extended).  And last night I was sobbing on the kitchen floor after opening another letter.  And today things are ok again.  No, I'm not Bipolar, I promise.  This process is, though!

The second letter came from the PGD lab in Maryland.  The one that had told me that they took my insurance and were in-network.  The one that my insurance company had confirmed was in-network (not that I trust CareFirst for anything anymore).  The letter said that the lab did not take insurance payments, only check or credit, and that the cost was $6250.  It's a good thing DH was home already when I opened this one, because I think that's what kept the meltdown from being fairly epic, him calming me down (kinda).  As it was, I was still trying to figure out how many years this would set us back.

My mom pointed out when I talked to her about it that all was not lost and that this didn't necessarily mean that insurance wouldn't pay and that I could possibly pay out of pocket (possibly with a loan from Dad) long enough to get reimbursed by the insurance company.  I still don't trust CareFirst for anything, so this made me nervous, but I was up for talking more to Mom about it over the weekend to explore the possibility.

This morning, I got a call from my nurse, who said she had spoken to the people at the PGD lab and they needed my insurance information.  Wait a second, what??  I thought they had just said they didn't take insurance payments!  So I called the finance person at the PGD lab, and she said that they do actually take insurance payments, they just prefer not to since many insurances don't cover it.  As I gave her my insurance info, I sagged in relief, which is probably what kept me from hitting the roof at them having frightened me like that for nothing!  I'm still pissed about it.  I wish I could just tell them what to do with that letter, but they're my only chance of being able to do a day 5 biopsy without freezing the embryos with money we don't currently have, since they're right across the hall from my clinic and can therefore get and test the samples in time for a day 6 transfer.

DH thinks that by the end of this, I'll end up writing a book about the finances of infertility.  Mom thinks I should see if there are organizations out there to help couples with the insurance issues of infertility and start one of my own if there aren't any.

Like I said in the last post, this weekend (along with Monday) was a nice interlude where the whole IF thing and the whole fighting-with-insurance-and-the-clinic thing weren't bothering me so much.  It was a good break, but definitely bracketed by a lot of frustration and struggle.

When last we saw Our Heroes, they had just learned the various downsides of the California lab for PGD and were planning to make an appointment to figure out why the heck the RE would be wanting to use that lab.  Our Heroes had also at that point been waiting for 2 1/2 weeks for the medical necessity letter from the clinic to appeal the IVF denial (which I am now comparing to an insurer authorizing bypass surgery without authorizing the opening incision).

Well, we're still waiting for that letter.  The nurse called last Wednesday and said that she was going to follow up because she didn't see the letter in my chart.  I left yet another message for her today because I haven't heard anything.  I'm going to follow my one friend's advice and start calling the doctor instead, leaving messages every day until I get the letter.  I shouldn't have to do that, but nothing gets done if I don't.  Oh, wait, nothing was getting done while I had been calling the nurse every day either. 

I had called to make an appointment to try and get some answers, and got an appointment for the 25th.  Then DH told me that day was bad.  So while I was making calls today, I went to change that appointment.  Best I could get was the second week of February, and it had to be Friday the 10th since the other days that week I will be in a class in the mornings. 

Since I hadn't been getting calls back from the nurse for days at a time, I called the Maryland PGD clinic to try to get some answers.  They can do the testing without a $375 courier fee and without samples from our parents that we pay out of pocket to get tested and without taking 8 weeks to make the probe.  It would take them 3 weeks to make the probe, but that would all be covered in the cost billed to insurance, and 3 weeks is a hell of a lot better than 8 (plus the time to get samples to them from Egypt and several places in the US).  I also found out that this lab and Shady Grove have...differences of opinion...that are why they don't prefer to work with each other anymore.  I was afraid that SG was going to refuse completely to work with them and force me to go to another clinic (which would require 25-30 mile drives in rush hour traffic for monitoring appointments), but my nurse did say when I had caught her last Wednesday that they would work with the lab if people's insurance didn't cover the California lab.  So I'm going to insist that they work with this lab whether they damned well like it or not.  Just as I'm going to have to insist that they do the day 3 biopsy and day 5 transfer if they want my business, since we just can't afford the day 5 biopsy and later FET (especially not after having to spend another $300 on stuff from last plan year now that the insurance stuff from then got straightened out).

So now the plan is to badger the RE till I get my letter, appeal CareFirst's moronic decision, and insist on the RE using the Maryland lab and doing a day 3 biopsy.

And while all this is happening, I've been lapped by yet another person.  Maybe, if I'm lucky, now that I've gotten these posts out (I was going to write most of this last week, but every time I was going to it just seemed like it would take too much energy) I'll be able to concentrate on what I started trying to do 5 hours ago and have to get done before bed.

Fading into the Distance

The last couple of days have been...well...educational.  I ended up finding out that CareFirst, in their infinite wisdom, had denied the IVF for not trying IUI first while still approving and authorizing the PGD!!  (For those who aren't aware, it's impossible to do PGD without doing IVF.)  Between DH and a couple of friends, we've come to the conclusion that CareFirst's decision-makers are the monkeys that weren't smart enough to be locked in the Hamlet-writing room.

To make life more fun, I had a scheduled phone call with one of the genetic counselors at the PGD lab in California that my clinic wants to go with.  (Why they want to go to one in California when there's one they talk about on their website that's across the hall from the main clinic in Rockville, I don't know, but that's a question for another day.)  Apparently this clinic doesn't work with the genetic testing place that has a patent on actually looking at the gene, so they have to look at whether DH and I transferred the chromosome 5 from our moms or our dads.  To do that, they have to get genetic samples from at least one of my parents and at least one of DH's.  Then they get the same testing on those that DH and I got to see which of each of our parents is the carrier.  When they look at the embryo tissue, since they can't look at the gene itself, they have to look at, for instance, "OK, in this one Jessie's chromosome 5 came from her mom, so that one's the carrier.  DH's chromosome 5 came from his mom and she's not the carrier, so that makes that embryo a carrier but not affected."

So that adds into things time for them to send the sample kits to our parents, time for the sample kits to get back (when one parent out of four is overseas), time for those samples to be tested, and time for them to then create the primer (also with blood from me and DH).  Oh, yeah, and my insurance isn't going to cover getting those samples tested.  That's out of our pockets unless what insurance our parents have will cover it.  As is the $375 courier fee to get the eventual biopsied cells to California.  Yes, a $375 plane ticket for 20 cells or so.  Again, WHY do they not want to use the place across the hall??

At this point, it seems like all Shady Grove wants to do is make us spend more money and time.  Now there's no way we'll get in 3 cycles (if they're needed, obviously) on this round of deductible and out-of-pocket max.  DH was asking if it might be worth going with another clinic, but the closest clinics other than Shady Grove are in DC and Baltimore, and that would SUCK in terms of going there for monitoring!!  I am going to make an appointment for another consultation, though, to try and figure out why the hell the doc wants us to go with the California people.  If I get the answers I need before the appointment, I can always cancel it.  Oh, yeah, and I still haven't gotten that letter of medical necessity for the IVF appeal from him!

Querying the Blogoverse

OK, now that I'm ready to talk about Friday's appointment, I have questions for those who have done PGD.  When I was reading online, I only saw information about PGD done on day 3, with a day 5 transfer.  My RE was talking about that option, but also about doing a biopsy on day 5 and freezing the embryos for later FET.  Did y'all have that option?  Did y'all do day 3 biopsies or day 5?  Did you get more/better embryos to transfer by doing day 5 biopsy?  At this point, we might have to insist on day 3 biopsy and day 5 transfer because our insurance doesn't cover freezing, and we can't afford the cost of freezing, storage, and thawing.  Everything else is covered by insurance, but not that.

I did find out from the insurance company today that there is no waiting for approval for IVF since we're using an in-network clinic.  Now I just need to hear from the case managers at the insurance company about where is in network for PGD and fertility pharmacies, as well as whether a day 5 biopsy and later FET would count as 1 cycle or 2, since apparently insurance companies differ in how they count that.  Since we get three cycles per live birth covered, that is a key question!

Finally Getting Answers!!

I got a call from the RE himself on Wednesday with the results of DH's genetic testing.  DH is a carrier for exactly one thing.  To quote Love Actually, you may have guessed it, but you may not believe it, it's SMA!

So now we get to learn a lot about pre-implantation genetic diagnosis.  The article I just linked to provided some really good information.  We still have a bunch of questions for the RE when we meet with him next Friday, though.  One question that I have for anyone who has needed PGD is how significantly it impacted the number of embryos they still had to transfer/freeze, whether they still had enough.

The biggest impact that the news has on me is that I finally have some sort of answer to the cosmic question of WHY.  Why we had to deal with infertility.  Why we couldn't have our first cycle when we were supposed to.  Why we weren't able to do what so many other people can do so easily.  The question of why is still on the list of questions I have for God when I get a chance to ask him, but it's moved a lot farther down the list.