Tuesday, August 24, 2010

Biting my tongue.

I did it.

Yesterday I bit my tongue so hard I nearly bit it off, but I did it. And with a smile.

A patient of mine, who is an executive in health care, was in for a cardiac screening test. After I went over her results, we started talking about insurance and coverage of preventive health testing. Blah blah blah.

Then she said IT.

She said, and I quote: "Now what is really ridiculous is coverage of...what do you call it? People having babies? No, not people having babies, that's ok, but people who can't have babies and do to that...what do you call it? Insemin....artificial...in vitro....?"

I interrupted and said "In vitro fertilization?"

"Yes! That's it! They pay for that...ummmm, excuse me? I think that's insane. I refuse to pay for that!"

I could feel my face freeze in a ridiculous smile. I thought there must be a hidden camera somewhere in my office.

I managed to stammer: "Well I don't think many pay for it, actually."

Her reply: "Oh yes they do! And it's ridiculous."

I didn't say anything else. After all, she was my patient and if the conversation had continued, I likely would have decked her, called her out on her bad dye job and stupid 80's hairdo, and then been fired. How about a little compassion for those of us who aren't naturally fertile? Sheesh.

Which brings me to something else...and I am warning you, I am NOT judging anyone for selecting to transfer certain numbers of embryos...I'm just talking here.

Someone with whom I work had their first IVF recently. They are young and otherwise unexplained. They chose to transfer two very good quality blasts. They got pregnant with twins. Their twins were born way too early and have spent considerable time in the NICU. One has had multiple surgeries.

I heard another coworker talking about how we (my employer) will be dropped by our insurance company because this person's twins have bankrupted us. It's true, they probably have. I cannot imagine the cost of two babies in the NICU for several months. The coworker was saying that it's not fair.

But.

Let's take a step backwards here.

Our insurance doesn't cover IVF. If they had, I can guaran-damn-tee you that couple would not have transferred two blasts. The doctors who recommended it was going against recommended guidelines. In medicine, guidelines are gold. They are the standard. I practice to guidelines every.single.day because they are based in science and research and outcomes studies.

But when you have zippo coverage for IVF, you take bigger risks and doctors allow it, encourage it even. You transfer more than might be the recommendation because you cannot afford--literally--to fail. It's understandable. We transferred four embryos on our last IVF and I was 34 years old. Granted, we were not a typical couple--we'd have four failures prior with nary a chemical, and our embryos weren't stellar. But even still, guidelines would say transfer no more than three. So I completely understand the need to transfer 'more than enough' just to be sure. Just to up the odds. Because I did it myself.

CC.R.M. has an unacceptable multiples rate. Multiples should never, ever be the goal. I am not saying all multiple pregnancies are doomed to be costly and risky and all of that, but the goal should always be healthy singleton pregnancies. But who's going to call them out? They want the success rates, too, and I don't think they can force women do to single embryo transfers. I do know they limit the number of CGH normal embryos they will transfer, thank God for that.

So back to my stupid stupid patient and my coworker: do they ever really think? Think that if IVF were covered we might not be faced with desperate couples making decisions that stray from established guidelines, and that health care costs would actually be lower in the end?

Of course not.

Because they're stupid. And annoying. And I'm really ashamed I couldn't have spoken my mind with my patient, but alas, I couldn't.

But maybe if they could watch my video (I reposted my link to our IVF music video) they would see that we're just two human beings, in love, wanting a family, and having to go to measures no one ever should to have one.

And it didn't cost anyone else a blessed cent, we fronted it all ourselves. So there.

34 comments:

  1. What an awesome post! There are ongoing battles right now between our CDN government and IF couples on this very topic. Quebec just announced funded IVF. IFer's main arguement is to fund IVF to save our system costly $$'s caused by multiples that end up in the NICU system. So a net savings if you will. But good for you to bite your tongue...you had no choice due to the cirucumstance. But totally wish you could have ripped her face off at the same time?! Ugh!!

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  2. I hope your tongue is feeling ok. I'm sure you bit it really hard. I admire your restraint. And you are absolutely right, of course. People are just clueless because they haven't ever been in this situation. But then again, a lot of people are just clueless in general. Sometimes, I don't like people very much.

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  3. well, yet again you show more grace and restraint than i have in my little pinky.

    i don't think i have to tell you how i feel about the transfer. im cringing because our doc wants to trnsfr 2 day 3 embryos. .cringing.

    xoxo
    thinking of you
    lis

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  4. Sigh, it must be so nice for patients/people like that who can so easily judge others from their soapbox. Folks like that...well, I almost wanna put the infertility hex on THEM. See how they like it. But, even my worst enemy, I wouldn't wish IF on.

    Love your thoughts on IF insurance coverage and affect on multiples. Mel from Stirrup Queens, as a former NICU twins mom, had a similar argument. I totally agree. We need more informed spokespeople out there, thank you for publicly sharing your thoughts.

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  5. i pay into my insurance 45 dollars per pay period, over 5 years, that is 10,800 dollars! and i have only been to the doc a few times....that is totally messed up...did you know they could raise ins. a dollar per person per pay period and it would totally cover an IVF? and honestly how many people per work place actually end up having to do it...I have not met too many people in person who have had infertility...really erks me!

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  6. Great post!I have some pretty strong feelings about this (and so do the NYT, who wrote an article about this last year). When people are spending their life savings on ONE CHANCE at something that cost most people no more than a 6 pack of beer, they do take chances. I'd expect nothing less. And it doesn't take rocket science to figure out that it is CHEAPER for insurance companies to pay for ivf and limit the number of embryos transferred than not pay for it. Just like it's cheaper for them to pay for BCPs than it is to pay for a child. But alas, fertiles like your coworker bitch loudly about having to "pay" for something they'll never use. I would have explained that to her, as she's probably bitching about paying for the twins. All it takes is a little compassion in this world.

    I hope your tongue is feeling better! I don't think I could have held mine.

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  7. Correct me if I'm wrong, but I believe many countries in the EU cover a couple cycles of IVF for this EXACT reason. And because they cover it, they only allow one embryo to be transferred. It makes so much sense. I hate to say it...sometimes American culture doesn't encourage a lot long-term consideration.

    I can't believe you didn't say anything to that lady. Amazing. Not sure if I could have done that....but obviously the right move in your position. I hope you never get a patient encounter like that again. But then again, we all know it is probably inevitable because people are just plain ignorant about IF.

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  8. This is a great post. I think I would have reacted like you and been too shocked to react. I once had a patient tell me that ART was like playing god and if you cannot have children you should find another way to get there. I sat in silence and just looked at her. I wish people were better educated and that IF was treated like a real medical issue.
    You bring up an interesting point about the number of embryos transfered. I really hope you co-workers twins hang in there, that is so terrible.

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  9. Oh that's awful. AWFUL. I know, we transferred 4 a couple of times and never wanted multiples. We transferred 2 CGH normals and I never wanted twins (well, until 2 normals were transferred and then I couldn't bear the thought of one of them not making it). In fact, if we are lucky enough to get another good embryo or two, I know I will have to transfer 2 again even though I really really don't want twins for many reasons but I can't afford another failure. If we had unlimited income, I'd totally do a eSET, but since we transferred 2 and 1 stuck, there we go. I haven't even done the cycle yet and I am obsessing about it (and I still don't know if I'll get any good eggs this time, you know). I wish people could be broader minded sometimes because I'm not even asking them to be empathetic, but just realize that their own experience isn't everyone else's. The truth is, I know my brother doesn't agree with fertility treatments at all and he is completely aware of what we've gone through. I think he thinks I'm going to hell for it...but he wouldn't dare say it outright. It is very very frustrating.

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  10. I agree that CCRM multiples rate is way too high. I went through a fresh cycle at CCRM in March and transferred only one. That ended up as a chemical pregnancy. At that point, Dr. Sch recommended I transfer two or three. Three? Really? I wanted to transfer one, but on his recommendation transferred two and now am pregnant with twins. I'm trying to be happy about it, but am terrified about complications. I wish that Dr. Sch. would have the capacity to listen to his patients and when one says "gee, I would feel more comfortable transferring one" he wouldn't automatically say "transfer two or three" like it's no big deal having twins or triplets.

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  11. This post makes me want to RANT. Especially since convo #1 and convo #2 are inexplicably linked. The lack of IVF coverage is WHY people transfer more embies than they "should". Would you believe I've had this argument with my FATHER IN LAW - they guy who helped us fund our CCRM adventures?!? No, I'm not kidding. He's so ridiculous about me, my, mine and not giving ANYTHING extra to anyone else that he'd rather cough up $20K for his son to do IVF than $1/month for insurance that might benefit someone else who might not "deserve" it. *sigh*

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  12. This is so true. I do have insurance coverage for IVF (so great, so thankful to live in a mandated state) and I do think it played a huge part in our decision to do a eSET.

    But I will also say, that for all the hand-outs you get from CCRM about doing a SET, when the time came for it - I was questioned. In fact, with Dr. Sch between my legs at transfer, the first thing he said to me was, "Why are you only transferring one?" And I had to defend my decision to him (carrying twins scares me, rather transfer multiple times than transfer multiples). He said ok, but then even said, "But this is a B, right?" and I could hear his disapproval of our choice. And now I'm pregnant, with one. My old RE was the same way, gave you all this paperwork about eSET, but always transferred more.

    I think when CCS becomes more common, and the success rates begin to improve even more (10 years from now?), perhaps REs will begin to follow their own advice. We'll see. Or even better, when IF coverage becomes a federal mandate, not just one in selective states.

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  13. UGh, I'm sorry. What a total ass. I say it almost every day, and I'll say it again...I don't get people. I work with underpriveleged people and then have to listen to total douchebags talk about how "we" shouldn't have to help "them" with our taxpayer money..blah blah blah...and the thing is the people talking usually have no f-ing clue what they are talking about, just like the situation with your bad dye job woman...It just KILLS me, and I'm sorry you had to deal with her.

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  14. I LOVE this post, specifically your arguments about insurance coverage. I volunteer with an infertility support organization and I cringe every time someone is "hoping" for twins. I get it on the one hand, having paid a lot of money out of pocket and having done extraordinary things to get coverage, BUT I know so, so many horror stories.

    And the stupid woman - you still have a job; I probably wouldn't. UGH.

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  15. The fact that you did not punch her square in her face makes you my all-time hero. Seriously.

    AWESOME post on...well, everything.

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  16. Too bad there aren't more people like you making educated arguments about IVF coverage. Unfortunately it's mostly ignorant folks like your patient who are making the decisions about coverage.... Speaking of your patient, you're a better woman than I. Hope your tongue heals quickly!

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  17. I can speak from personal experience that CCRM actually pushed me towards single embryo transfer (both during fresh and FET). Ultimately it was my choice but they really really really made it clear the single was optimal.

    You're 100% right that if I had insurance coverage for this (like people get for erectile dysfunction), I would have transferred one embryo - every single time. EVERY SINGLE TIME.

    And a multiple pregnancy (even twins) should NEVER EVER be the goal - not for the health of mom or the babies.

    It would be great if our government would support healthy choices by mandating fertility coverage to aid what's not working!

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  18. CCRM & Dr. S-craft are more concerned about their success rates than anything else. My RE NEVER suggested DE or transferring more than 1 at a time. In fact, he recommended PGD testing on every round (8 rounds of ivf!) and we ended up going donor at long last without pressure from him. When I chose to transfer 2, he held my hand on the transfer table and asked gently, twice, "are you sure you want twins? they could turn into triplets or quads. these are both excellent quality embryos." Of course, we had a prior discussion about complications beforehand, so we were prepared. I'm happy to say that my twins were born 6 weeks ago, 4 weeks early
    (planned c-section) each weighing 7.5lbs - no nicu.
    On another note - no one talks about how much money we spend on people who smoke, are obese or choose to keep having children while on welfare. Who decides who and what is 'worthy' of spending money on? When we get to that point, we are hopeless.

    And on one last note - that co-worker shouldn't be so upset about her insurance dropping them. When Obama's healthcare goes into effect, employers will find it cheaper to pay the fine for not offering insurance to their employees and we'll all be on government healthcare plans.

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  19. I'm really impressed that you managed to bite your tongue. That woman makes me so angry. I probably would've said something passive aggressive like, "Oh, so I guess you've had an easy time with babymaking, then?" in a snotty voice. Then when she left I would have cried. Sounds like you did better. :)

    I also completely agree with you about IVF coverage. Infertility coverage is so inexpensive, really. Much, much less expensive than NICU stays for twins. I think Australia does it that way with their health care? (Only single embryo transfers but covered IVFs - I think)

    I wonder if your co-worker would have had the "it's not fair" attitude if the babies had been spontaneously conceived twins.

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  20. I am spitting with rage on your behalf! In this country (the UK) you can have bre.ast enlargements and reductions, tattoo removal and various other forms of plastic surgery on the NHS (taxpayers cost) if you can prove that not having it will cause you "emotional distress". Yet, no matter how much emotional distress you are under, you will only get IVF on the NHS if you tick about a million boxes. Once you add in the people treated for accidental injury while taking part in ridiculously dangerous sports, or while drunk or on drugs, and the people who have smoked, drank or drugged themselves into can.cer or other serious illnesses - all of whom are treated for free automatically - you wonder what we've done wrong that we have to pay out of our own pockets to correct or compensate for the undeserved shortcomings of our reproductive systems.

    And on the topic of SET, our clinic were quite ready to transfer two "perfect" embryos that were the result of donor eggs and it was me that had to say "no, I think one would be sensible". That one stuck, and I am SO relieved I did not follow their recommendations - I'm 41 and high risk anyway and twins would have been a really stupid idea!

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  21. Hmm, you got me thinking. I went through and paid for 2 IVF/PGD cycles (no help from insurance), and that really sucked. Even so, I’ve never been a huge proponent of passing along these costs to other purchasers of insurance – because, yes, insurance and doctors do make some money off these procedures, but mostly it is other consumers who have to shoulder the burden of these costs in the form of higher premiums, etc. Medical coverage is insanely expensive. (Stay with me, here.) I just think there are limited resources for medical care and we do have to make some priorities about what we cover, and that those suffering from horrible afflictions (cancer, debilitative diseases, etc) should get priority. But your argument makes a lot of sense, and I’d be curious to get more data on how the cost of multiples impacts overall costs. I also think that if we did extend coverage for IVF, there would have to be some parameters and limits around it for the same reasons of cost containment. Anyway, this is just my opinion on the cost side of things and I know it is a privileged one. We got lucky, pregnant the second time (miscarried a twin, actually). And we are not rich, but we managed to pay off the procedures without going into debt. I’m sorry you had to listen to that patient though. She sounded misinformed and entitled, and that was lame that you couldn’t really say anything to enlighten her about your experience; although she probably wasn’t that interested in listening to anyone but herself...

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  22. I am sorry you had to deal with that patient. That being said, I have a different view about insurance and multiples.

    I have had more than one transferred and refuse to have only one transferred. Why? I am 38, have never had a good pregnancy, and most did not implant. They implanted three grade fours last time and nothing. Zip. Because of my history, implanting one is not good. I think the number you should implant depends on your history and age.

    I personally know several women that had twins and not a single one had issues. Yes, one case could have a lot of problems, yet I know plenty of other singletons that caused a lot of financial issues and spent a lot of time in the NICU as well.

    As someone else said above, people make choices (drinking, drugs, smoking) that can drastically affect the child. IF is not a choice and I wholeheartedly believe that those who cannot get pregnant should have at least one IVF covered. Why should we be paying for a condition that is not affected by what we do? We can't cure it by eating more vegetables.

    That being said, I did get some coverage. It didn't pay everything and it was one big pain in the rear. When I had to pay myself, it was much less stressful as I wasn't waiting for approval and having to fight for everything that was truly covered. Somehow, I wonder how all that stress from insurance made a difference.

    Everyone should read the literature that comes with their treatment so they know the risks involved. Each person is different, and each person has had their own heartaches and experiences.

    T

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  23. One more thing, insurance companies get drastically reduced contracted rates. CCRM won't give you those great rates unless your insurance gives you IVF coverage for procedures. I was mislead about that before when my insurance covered meds only.

    T

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  24. OMG!!! You're a much better person that I am (not that THAT has ever been up for debate!) because I would not have been able to restrain myself from slapping her silly. It might be like that flight attendant who pulled the emergency slide and quit his job- it's fundamentally wrong to do but you still would have got you a TON of supporters! :)
    I feel the same way you do about insurance paying for these treatments and how that would greatly reduce the risks people are willing to take. Kate Gosslin (hate that woman but she DID make a point about this) said one time in an interview that her insurance did NOT cover fertility treatment on ANY level- so doing what she did (injectable meds) resulted in a ridiculously high-risk, un-necessary pregnancy, costing her insurance company WAY more than a cycle that could have been tailored to her needs would have been. She said that if insurance would have paid for IVF she would have transferred 1 embryo at a time, and never had so many babies.
    I'm very passionate about the "great healthcare debate" of our generation- changes DO need to happen, but not hastily. and we need to evaluate what we are covering (treatment for druggies, obesity, and self-inflicted illnesses of all kinds) and what we are NOT covering- things that people have no control over.
    *sigh*

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  25. What. A. Freak. No, let's spend our dollars on jackasses who come in for dialysis whilst drinking coke and eating pizza (I've had this patient). Let's cover the 4th bypass for the idiot who can't walk past a donut shop (and I'm sure you've had this one). No, we wouldn't want to assist nice folks trying to make a family. Barf.

    PS- You bit your tongue because you are the ultimate badass professional, and I don't know many who could do it (again and again) so well.

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  26. Why oh why can’t people keep their traps shut? I don’t know how you said nothing. I’m feeling a bit hostile lately, so I think I would have just flatly said, “I’ve done IVF,” and let her squirm. Of course, those types usually can’t shut up. Idiots.

    Even though my boss knows that DH and I have done IVF (had to tell when I was on bedrest for pg gone bad #2, otherwise never would have), he has said on several occasions that he doesn’t think IVF should be part of health coverage. So it was strange that just last week he said that our employer not covering a dependent’s pregnancy was an “atrocity.” Hmmm… Only leaves me to think that he worries about his 20 year old daughter getting pregnant and he might have to anty up for it. My point is that way too many people have no sympathy for situations they’ve not experienced first hand. Same thing can be said about your co-workers whining about saving the lives of the twins. Guess what, honey, public aid, a.k.a. taxpayers, pays for a boat load of NICU babies whose mothers were smoking crack and drinking themselves into oblivion. This girl, your other co-worker, just wanted a family to love.

    And if we’re going to pick apart health plans, since my employer's plan includes in-patient substance abuse coverage that includes 12 week LOA, I would very much appreciate it if they would add an optional IF rider. (Although, if I could fake a substance addiction, God knows I could use a LOA right now.)

    All so very frustrating. You handled yourself well though. Kudos to you!

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  27. You are a saint. I cannot believe how much ignorance and stupidity you have to put up with from some of your patients freely expressing their opinions. What IF has taught me is never to judge and that you just don't know what it's like until you've walked in someone's shoes. Literally. People who don't have IF and can choose to have how many kids they want and when they want to have them will never understand this heart wrenching pain.

    One point I want to make too is that the number of embryos people choose to transfer is also influenced by the uncertainty of this medical procedure. We just don't know which ones and under what exact conditions will produce a viable pregnancy. We don't. Not all CGH normal embryos result in viable pregnancies. Not all 5AA day 5 blasts result in viable pregnancies. So that is why we guess and err on the side of being more generous rather than stingy, which goes to your whole point about insurance and paying for IVF. If they did pay for it, we could have the luxury of transferring them all, one by one. If my insurance paid for IVF, I probably would have done eSET as well but seeing as is it was all OOP for me and also out of country, I chose to transfer the two embryos I had.

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  28. Both of those people suck. They are naive. There needs to be more education on fertility issues (the emotional, physical, moral and financial aspects). Since I went through IVF myself, I've tried to put myself in other's shoes in all other aspects of my life. You never know and shouldn't judge until you've experienced it yourself. IMHO

    Regarding C.CRM...they make it clear, in their literature, that having more than one baby is risky and they do not encourage it. The truth is, the patients do. You know how difficult IVF is...whether it's your first time or your tenth time, you want to go through this as little as possible and since so many people have twins and their babies are okay, you go for it. I think that woman's situation was more unique than normal. I think most twin pregnancies result in healthy babies. Maybe I'm wrong (or naive - ha!), I don't know for sure, I'm just thinking about the people I know that have twins. Some are early, yes, but many seem to do well.

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  29. Wow, I would have decked her. I think you should have said, well I had to do IVF 5 times just to make her feel like she stuck her foot in her mouth so far it came out her butt. But good for you for being so professional.

    On the multiples / insurance issue... very well put!!! Yes, I transferred 3 and 4 one time, and would have NEVER done that had I not been desperate for this very expensive out of pocket procedure to work. If insurance would step it up for those of us who have infertility, ya know, a true medical condition, then they could negotiate and lower the cost of IVF and allow more families the ability to have children and less high order multiples. The whole thing is just so unfair.

    Anyway, hope you're doing well and that your adoption process goes perfectly. Hugs.

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  30. I'm with Meg. Would it have made a difference if the twins were conceived without IVF? What if it was older kids in the PICU? A spouse in the ICU? Shit happens. True, there were some calculated risks there. People do that everyday by smoking, not exercising, not eating healthy, texting while driving, etc., etc., etc. (albeit your clinic is a healthier than most). If they think that is unfair, they really need to get out of healthcare. It is so much more complicated than that.
    B

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  31. If it's any consolation, if this woman is unwittingly sticking her foot in her mouth in front of you, she'll most definitely do it in front of someone else. Who won't have to show any professional restraint, and will absolutely say to her exactly what you would have if you could. And deck her. For sure.

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  32. This is such a great post. A lot of people are ignorant about IVF, even those in the medical profession. Just makes you want to scream.

    Yes on IVF insurance coverage and yes on SET!! I always wondered why there is a term "elective" single embryo transfer? As if transfering more than one is not elective?!

    Of course, no one talks about that if you put one in, you could end up with two, because that's so rare. We were told 2-4%, but we weren't told that a 5 day embryo transfer increases that risk. I just think it's not natural for multiple pregnancies. Humans were meant to have one at a time. No woman should be forced to have more children at one time than she wants, especially by a medical procedure that she is doing to try to get pregnant!

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  33. Wow. just wow. You are a professional beyond words because I definitely would have said something more. (which I can say since it didnt happen to me while in reality I probably wouldn't have said anything because thats just how it is....). I'm sorry you have to deal with such asshats. Truly.

    I only transferred two each time. And my doctor did encourage me to transfer more "next time", but there won't be any next time...because other people 'refuse to pay for that' because it's so 'ridiculous'.

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