Dazed and Confused by IVF protocols & procedures

chucktgirl

VENT: I am so over-loaded with information, misinformation, emotions, stress, and decisions to be made. Where is that IF support staff I was looking for last month? (Oh yeah, they don't exist.)
Yesterday I called my Nurse to report AF arriving early. She said, great, let's start your protocol! Okay, but we were told we weren't starting until January. So I called out of work yesterday and spent the whole day researching drug prices, arranging with a local RE to do my suppression test/bloodwork appointments, and trying to re-arrange my schedule for the rest of this month, including trying to come up with a lie to tell my Mom on why I'd be missing Thanksgiving. Then I got my calendar with lots of little surprises on it (Lovenox, Dexamethasone, Doxy, and needing to fly out on Monday!) Um, I don't do well with surprises. My DH was having a freak out over all of this coming up suddenly, plus he started looking at pricing again. The clinic's paperwork suggests an IVF cycle will cost between $17,000- $23,000. Our estimate is already around $35,000, with more surprise costs that keep popping up. We realized that neither one of us had any idea of what plan the Dr. has for us. Frustrated, my DH said last night he is just not ready to cycle and wants to postpone until January, as we had planned. I couldn't really argue, other than I would love to get this procedure over with! I called our RE today to postpone the cycle, and I asked a lot of questions. No one ever explained how a FET works to us. Today I was informed that if we freeze, which is what the RE recommends, it will be two more months before we transfer! So then I'd be looking at MARCH! Oh, I admit it... I had no idea what we were in for when I re-opened this can of worms. I am so overwhelmed right now, thinking maybe we should start tomorrow instead of waiting until January. I'm lost. Will a magic Fairy please come down with her wand and bestow some clarity, hope, and sanity upon me, please?

DoublePortion

I would be super overwhelmed too! Waiting sucks sooo bad, but rushing into the cycle might be worse. Also, that is a LOT of money and I would want to be 100% informed of what the plan was to make sure there are as few monetary surprises as possible. I hope you & your DH can find a plan that you are both comfortable with. ((hugs))

hmz819

I agree with DP.

Do you or DH have to be on any supplements to help egg quality or counts? If so those should be taken for about 3 mos so a Jan start may be better.

I hope you guys can come up with a plan that works for you both.

hmz819

P.S. What protocol are you doing?

chucktgirl

Thanks, DP. I could use a hug right now. DH feels like you do, and because I'm just in a daze, I'm following his lead. Tired of making all the decisions!

hmz, Dr. did not put us on any supplements at all (other than pre-natals). Is that odd for them?

I'm on Antagonist protocol. No priming due to FVL.
150 Menopur & Lovenox in AM, 300 Follistim & Dex in PM days 3-12, adding in Ganirelix when needed.

PrettyAccountant

Coming from someone who jumps with both feet in because I need to do this NOW!!!!!! I would plan it out and wait - as much as it kills all of us to wait . Not that I ever take my own advice.....
Hugs.

Mrs.McIrish

Based on what all the other CCRM girls have posted over the years, it is not a quick cycle there. The protocols all usually take mo the for start to finish because they are so thorough. I assume he has you doing testing on the embryos for normals before doing a FET? Also, some utes are toxic to good embryos right after stimming so sometimes doing an FET later makes sense--let your hormones level out before an ET.. Personally, I think it is better not to waste more time and just get it under way. Otherwise you are going to just stress yourself out more waiting til January. Having less time to think is better for me. Unless you are debating spending the $ to cycle at all considering what the doc told you? Only you and you DH can decide if its worth it. Deep breaths! You've done this before. The added drugs aren't a big deal You can handle them!

J&D2007

I'm so sorry about the stress. I agree with mrs McIrish if you are looking for opinions. I'd rather jump right in and go for it and I find waiting more stressful. As for the additional meds, those are pretty standard and no biggies, doxy and dex both will only be $10. Is the levenox just for FVL? As for a freeze all, I'd definitely consider it even if you don't do CCS. I really think my failed Ivfs are mostly to do with my body being too over stimulated and not ready for ET and I will do a freeze all no matter what. The way I look at it, the faster I get these aging eggs out of my body, the better! After they come out, I can take all the time I need to get ready for a FET. I was in the same boat as you and really didn't want to wait until march for that so we went ahead and started now. Good luck to you and I hope you are happy with whatever decision you make.

JSM0801

I just wanted to say I completely agree with Mrs.Mcirish's post! And honestly, waiting for an FET is so minor in the grand scheme of things. Think about how long you have waited already in the world of IF. An extra 4-6 weeks is so worth it for the best outcome! You and DH just have to decide if you are ready to jump in or would feel less stressed waiting another month to start. GL with whatever you decide! 

beachy6

If I were you...I'd wait. That's a big statement for me since I'm like pp and LOVE to just jump all in without a second thought! But, if it were me and I was paying that much for one cycle, I'd want to make sure all my ducks were in a row before starting. I agree with letting your DH take the lead on this one.

Or, just go all in and do the ER now and then the FET would be in January, when you'd planned to start. That's how I would rationalize starting now to myself I'm not a very good role model though!

luvboston

Didn't you have a follow up phone call with the doctor after your odwu? My friend is cycling at ccrm and they very clearly stated that she would have a phone call before moving forward. I would wait to cycle as it seems you are not ready. Also from everyone including my friend the time period for the fet and how long everything is going to take seems right. Also CCRM is very expensive however the additional meds are dirt cheap the only thing that can be expensive if your insurance company doesnt cover it is lovenox but your insurance comp should cover it as its a standard blood thinner.

chucktgirl

Thanks for all of the input and support! We are waiting. I was hoping a feeling of relief would come over me, after the decision had been made, but no such luck. All I'm filled with is second-guessing and anger that I could have had this all over by Thanksgiving and could (hopefully be looking forward to my FET). DH seems relieved though.
To answer a few questions:
Mrs.McIrish, we honestly have not made that decision yet. Yes, Dr. "strongly recommends" CCS testing. Of course he does. Who wouldn't want the answers? But it's also $7000 OOP. The highest quantity blasts we've ever achieved is two. So, we'd likely be paying $7000 to test two blasts that probably won't be normal anyway. All I keep thinking is that my husband's car is 7 years old and mine is 6. That's a lot of car money. That makes me nervous. I honestly don't even know the procedure for freezing and then implanting two untested embryos. I guess they must freeze them right away, then thaw and implant, then cross my fingers.
J&D, I know the additional meds aren't a big deal, but I HATE surprises, particularly IVF ones. When I'm told I'll be taking just two injectables, I don't expect that to really mean four, plus two orally, AND patches. Frustrating. Yes, the Lovenox is for FVL. I've never been asked to take it throughout the whole cycle before. Previously it was just after transfer. I need changes to be explained to me. I never just accept something because someone says to do it. I've learned to be my own best advocate that way. Are you doing CCS? I'm open to trying the FET, since fresh has not yet worked for me, but I hate the delay and more drugs.
JSM, the difference between a fresh cycle in November and a FET in March is the difference of me being a first time Mom at 42 or at 43. That may not sound like a lot of difference, but to me it really is crossing a line drawn in the sand. Dr. also got angry that I didn't come to him five months ago, when I first contacted him, like those five months have made the difference between success or not. So, taking his lead, another five months sounds like disaster!
Beachy, I'm following your philosophy. So today, you ARE a good role model!
luvboston, no! No one had mentioned a follow up phone call to me until yesterday, when I asked about switching REs within the clinic. I was told I absolutely can NOT switch. They do not allow it. But she offered to set up a follow up phone call instead, to talk about things. Ha! I'm trying to avoid ever having to talk to him again, not rush into another bad phone call! But I'm surprised that no one ever told us about getting a follow up call. It seems that many other women are having vastly different experiences with this clinic than I am. That sucks for me, I guess. Thanks for the head's up.

Well, thanks again! I guess we'll revisit this again. If AF comes early again, maybe I can cycle in December!

J&D2007

I'm sorry, ChuckTgirl. I'm so sorry you felt rushed and so sorry you don't like your Dr. It absolutely cannot be the final answer that you cannot change doctors. Don't accept that for a minute. Talk to someone else. I don't even think its legal to force you to see a dr you don't want to see. As for CCS, DH never wants to do any chromosomal testing and I prefer to do it. We are signed up and planning on doing it. But, honestly, if we only have one or two embryos (or less!) at day 5 we will seriously consider not doing it. I still will do a freeze all though. And, I do think its standard protocol there to have a follow up phone call as its written on all the calendars I've ever seen from there. Something tells me his ego is too big to reduce himself to explaining things. Did they give you the supplement list they advise for poor responders? If not, I have it and can send to you if you want. Sorry it didn't work out for you this month :-(

chucktgirl

J&D2007 said:

I'm sorry, ChuckTgirl. I'm so sorry you felt rushed and so sorry you don't like your Dr. It absolutely cannot be the final answer that you cannot change doctors. Don't accept that for a minute. Talk to someone else. I don't even think its legal to force you to see a dr you don't want to see. As for CCS, DH never wants to do any chromosomal testing and I prefer to do it. We are signed up and planning on doing it. But, honestly, if we only have one or two embryos (or less!) at day 5 we will seriously consider not doing it. I still will do a freeze all though. And, I do think its standard protocol there to have a follow up phone call as its written on all the calendars I've ever seen from there. Something tells me his ego is too big to reduce himself to explaining things. Did they give you the supplement list they advise for poor responders? If not, I have it and can send to you if you want. Sorry it didn't work out for you this month :-(

Huh. Nope, no supplement list. WTH? I'm starting to really regret choosing this clinic. I don't know why our experience is so crappy. DH feels the same, so it's not just me being picky. We agreed that both of our previous clinics had way better communication and explanations about the process. I will call and ask our Nurse about that today. What crap. I also just got my test results back in the portal (I had to call and ask for them, since they didn't show up on their own) and I have some questions about the results, too. Thanks for your feedback!

Oh, and I agree with your thinking on the CCS. If I had eight, I could rationalize the cost better. But with my normal one or two, it is painful to pay for so few.

J&D2007

You know, they didn't really seem to care too much about the supplements. I had to ask to get them, too. I think they are so confident in their ways that they don't feel that the 'extras' make much difference. You definitely have to be your own advocate out there or you get lost in the shuffle. I'm just going because of the great rep of the lab. I figure it can't hurt my chances.. (And ask about dhea for you, they didn't recommend for me for some reason, but maybe they will for you)

hmz819

I was told when I made my first appointment that whom ever I have that first appointment with that will be my doctor. They do not allow you to switch doctors.

When I asked about supplements I was told there isn't concrete research out there that they help so I can ask my nurse for the list and take them if I like. He did mention acai berry to me. I could look at my notes if you like.

I'm so sorry you are having such a rough time with the clinic. I'm not sure why your experience has been so different than others. I hope it gets better for you!

J&D could you send me the list?