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nectarine / 2192 posts
@jaguar: thanks, I needed that. It sounds like heis going to tweak a few things, add growth hormone and probably freeze all. Hopefully that's enough. I really think I need lovenox. We will see how it goes. I really have trouble letting go!
@dookie32: Kwak Kim. Everything online sounds great except she only does IVIG, not intralipids, location, and the extreme price. $5000-8000 plus labs, for just initial consultation?!? Yikes!
pear / 1767 posts
@dookie32: Can I ask about the name of the Chicago infertility FB group? I'm in Chicago as well and would love to hear about other local experiences.
pomegranate / 3764 posts
@AmeliaBedilia: *hugs* Keep bouncing ideas around, surely between all us girls & our different clinics & protocols ... We will have some info that's useful!
pomegranate / 3764 posts
@agold: we left our first clinic after disc overing they refused to use vitrification -- I swear the day 1 slow freezes were what was responsible for us losing so many embryos at thaw.
Most clinics now encourage vitrification.
grapefruit / 4045 posts
@jaguar: Losing embryos is always so tough to deal with at any stage. I haven't heard about freezing at day 1. But all clinics do things differently to varying degrees.
pear / 1986 posts
@AmeliaBedilia: I don't have too much to add, but I did want to mention I had several very low positive tests for APAs and while my RE did not feel it was necessary to have me on Lovenox, I saw a hematologist who specializes in hematologic disorders and pregnancy, and she did recommend Lovenox at the beginning of ovarian stimulation through almost the end of pregnancy (I think they switch you to heparin near the end because the half-life is shorter). So it will be interesting to see what your RE suggests on that front.
kiwi / 538 posts
@AmeliaBedilia: Holy cow that's a lot of money! So that's just to work with her- not including any treatments?
@shantuck: It's called "Chicagoland Infertility (IVF IUI ICSI TTC)". It's a closed group but if you put in a request to join the owner will add you. Where do you live in Chicago? Are you with a clinic yet?
nectarine / 2192 posts
@dookie32: yes!!!! I forwarded my questions to my RE tomorrow with her cost and delay vs. matzner in LA. We will see what he says. I just hope he doesn't think that she is the only one. $300 and little hassle- sure, but that kind of money in addition to the delay and travel- yikes!
apricot / 365 posts
@AmeliaBedilia: I didn't have a chance to read everything, but interested what you come across re reproductive immunology. I (and my allergist and PCP) feel strongly that I have some sort of autoimmune issue, but I haven't tested positive for anything yet
pear / 1986 posts
@AmeliaBedilia: I just wanted to wish you luck with your appointment tomorrow. I hope it brings some helpful answers and a direction forward for your next cycle.
pomegranate / 3764 posts
Bloods from today. Progesterone still only 38, but they don't seem concerned, so I guess we keep plugging away!!
hostess / wonderful apple seed / 16729 posts
@jaguar: woohoo! Great numbers! Are you having another beta in two days or so?
pomegranate / 3764 posts
@bluestriped bee: I think we're it! They wanted to see doubling and they're happy.. so I guess we wait and see now.
grapefruit / 4045 posts
@jaguar: Fantastic numbers! My RE stopped betas once I hit 1,000 and he then started doing ultrasounds. What's your next step?
pomegranate / 3764 posts
@agold: early scan booked for feb 29th! I hope we get that far... And that we see something!!
cherry / 107 posts
Thought I'd be triggering to freeze the 2 eggs I was able to make and do another cycle becuase we want a decent number of eggs for when we do DH's mTESE. Just kidding. My biggest follicle grew from 16 to 20.5 and the 2nd only from 11.5 to 14, so they're canceling my cycle after 16 freaking days. I wish they'd just done it a week ago and saved me a few thousand dollars.! Uuuugggghhh. This blows!
persimmon / 1132 posts
@Aqualov: Ugh! I'm so sorry. They should be helping you out with samples and discounts left and right, whether you have insurance or not. None of this is your fault. IF is totally not fair. I hope that it was just because they overly suppressed you and next time you will have a much better response. Hugs.
pear / 1881 posts
@Aqualov: omg, hun..i'm so sorry. i don't even know what to say. that is completely ridiculous
pea / 8 posts
@agualov: I am so sorry. That is so frustrating and just heart breaking. It just sucks so much to go through the cycle and all the meds. I hope that your Drs have a better plan for the next round and can offer some suggestions for discounts, etc on the medications.
cherry / 107 posts
Thanks everyone. I asked the doctor about getting next cycle's meds from the overseas pharmacy a few of you ladies used and she thinks that they can do it, but she's not sure. She thinks that if they can't pass along the script they can at least give me a physical copy of it so that I can send it over myself, thus reducing their liability. That would save me $4-6K per cycle. Without that I can only afford to try one more time right now. We've only used $1300 of our S20K IVF coverage so far (for my mock transfer) so we're okay on the procedure end- it's all the damn meds at such high doses!
pomegranate / 3764 posts
@Aqualov: Bloody hell, I am so frustrated and cranky for you. I am SO sorry they're cancelling your cycle.
pomegranate / 3764 posts
Speaking of disappointing IVF cycles....
We had our second opinion appt at a new clinic yesterday - yes, I kept it anyway, because I wanted a plan in place should we not have this work out. It's the most expensive company here and this particular clinic has incredible success rates. Well, I know why now.
They refuse to treat me, because my weight is over the 'normal' BMI - and expect me to fork out 1k on a 12 week nutrition/PT program before they can start. They want me to do a hysteroscopy/biopsy "just in case" despite having no history or signs of endo, polyps, etc etc. They will ONLY do IVF with PGD. No regular IVF at all. Did I mention it costs a small fortune?
Oh, and the last thing the doctor told me before I left was that he'd only give this pregnancy a 50/50 chance of viability, so to expect to miscarry. I asked why, he said because my progesterone is less than 40. So... that was the perfect thing to say to someone who is already on ULTRA HIGH ANXIETY PANIC MODE about this pregnancy.
Needless to say, even if we lose this pregnancy, we won't be going with this clinic.
pear / 1986 posts
@jaguar: OMG, what is wrong with people?! These are supposed to be medical PROFESSIONALs, not to mention humans with a heart! That is just absolutely CRAZY! Good thing you won't need to go there anyway!!!
pear / 1881 posts
@jaguar: what the heck, Jag?! What were they thinking..between your comment and another thread about the bedside manner of a clinic, I'm starting to wonder what is WRONG with some people! I'm so sorry..i would not worry right now. Are you on any sort of progesterone supplementation? I'm so sorry that you had to deal with this going into the weekend
pomegranate / 3764 posts
@NorthStar: I'm on hard core progesterone already, since this was a HRT FET so all artificial! I'm on 400mg morning & 400mg at night, then I've added in an extra crinone stick to help my paranoia.
What a day, huh??
pear / 1881 posts
@jaguar: yeah, no kidding. I thought you said you were on progesterone, so I wanted to double check. I'm so sorry you had to deal with such horrible people. You have a precious and very loved baby growing in your right now and try to remember that.
pear / 1986 posts
@jaguar: I'm so sorry that happened to you. Insensitive doesn't even begin to cover it! And also, I'm sure if your current clinic was concerned about your progesterone levels at all they would be increasing your level of support, so clearly they are not concerned!
pomegranate / 3764 posts
@NorthStar: So loved, even if just for a bit.
@GreenThumb: I must say, I rang them and OB in a panic. Clinic said they like 30+ so to breathe and it's fine. OB said you can't accurately measure progesterone through bloods and it's more important that it's being absorbed into the uterus, so not to worry.
Still... I'm anxious enough as it is, you know?
kiwi / 538 posts
@jaguar: Good God what a horrible thing for a doctor to say! That's so disturbing that's his bedside manner with women struggling with infertility. Ignore that asshole!
That's kind of crazy requiring everyone to do PGD. It sounds like something they do to increase their own success rates more than anything else. We did it but only because egg quality was our issue- it's obviously not necessary for everyone.
cherry / 107 posts
@jaguar: WT HOLY F!!?? Some people should not be allowed to practice medicine.
apricot / 344 posts
@jaguar: I'm so so sorry you had to deal with that horrible appointment today!! What a TERRIBLE thing to tell someone with IF who is over the moon about being pregnant. You're right about NEVER returning to them. My heart feels your worry about the current little bean inside too. I'm pretty much paranoid about getting thru the 1st trimester now. Though we did pay an extra $750 out of pocket with our RE to continue being monitored weekly thru the first tri. Both bloodwork and u/s's so that will give up peace of mind (best way to spend $750 in my eyes!) If anything needs to be adjusted we'll be on top of it.
@Aqualov: I'm so sorry. I can only imagine how defeated you feel right now. Luckily you still have a good amount of insurance coverage available and the overseas meds will hopefully go smoothly. Does your RE's office have any donated meds they could offer? I know I'm planning to donate my extras once we get thru the first trimester safely. Again, I'm so sorry.
nectarine / 2192 posts
@Aqualov: I'm so sorry. That really sucks!
@jaguar: wtf?!? That's terrible. They probably have high success rates because they make people jump through so many hoops. Your numbers look great, hang in there.
AFM, wtf appointment was yesterday. RE didn't see the email I sent the night before with my questions, and we didn't have time to get to all of them, but here is the jist:
He thinks we had implantation and it could be embryo quality vs autoimmune. He mentioned my borderline lupus anticoagulant and suggested anticoagulant before he even read the email about MTHFR, and is on board with that. He is ok either way with us seeing reproductive immunology. He said since I had such good response to femara, that I would probably do better with purified hormone than recombinant and will probably have me do Menopur 150 and follistim 300 instead of Menopur 75 and follistim 375. I asked about LH affecting egg quality, he said its controversial but he believed it helps. I asked about bravelle instead, he said he loves bravelle but it's impossible to get. It looks like I can get it overseas so I will ask him about that. He doesn't think I was over suppressed, that with a low AMH, response is variable, and skipping the estrogen increases the risk of a dominant follicle. He also wants a freeze all for uterine receptivity, and we will start growth hormone 4 days before stims. He said it is all or nothing but works better in younger women like me (first time 35, almost 36 is younger!) and that 50% of great response to it. He mentioned the possibility of banking embryos in another cycle depending on how we do this time-yikes, $$$ and stress! If we have to do a third cycle, they'd give me an extra discount- $8100 plus meds. Doing the freeze all costs an extra $2800 and my meds will be pricy, total costing 4000-5000 more than last time.
We are debating on whether to spend the money to see an immunologist. We have two things that weren't treated last time- mthfr and antiphospholipid, and the steps above that are IVIG, which is another $3000 or more per treatment and unlikely to be covered by insurance.
My questions for you ladies:
1. I'm worried about the higher Menopur. Please tell me this lab is reasonable and to let it go.
2. Is intralipids (sooner/more often)/lovenox/prednisone (starting two weeks before transfer)/ASA enough? All Reeoductive immunology will probably do is more tests and recommend IVIG if I can afford it, though some REs including Sher say that intralipids are as good as IVIG.
apricot / 344 posts
@AmeliaBedilia: I had egg quality issues our first round and that was on 125 units of gonal f and 75 of menopur. The second round they changed it to 150 of menopur, and 75 units of gonal f (then down to 50 about half way thru stims) and added the 12.5 units of HGH. It made a huge difference in embryo quality and ultimately worked. I wouldn't necessarily question the RE's plans since they are the experts. I think it's great to be informed, but like I did, remind yourself that this is their specialty. Let them work their magic and trust the process.
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