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Hellish Morning, Follow up with the RE, and lots of whining - Karen's Musings
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estherchaya
estherchaya
Hellish Morning, Follow up with the RE, and lots of whining
I just don't know what to think at this point. I had my followup at the fertility clinic today and I just don't have the warm fuzzies I'd hoped to have when it was all said and done. Not that I expected any warm fuzzies or anything, but it would have been nice.

If you are one of the few folks who read my blogger blog, this is cut and pasted directly from that one, so no need to bother reading this one.

Anyway, it was a hellish morning. Seth left the house before 4am this morning to catch a flight to NY for a one-day conference. He doesn't do this often, so I can't hold it against him or anything and I do appreciate him being willing to do it all in one day instead of leaving me overnight, but still. The point is the man WOKE ME UP too darned early in the morning. First by his alarm going off at 3am and then at 3:45 to kiss me goodbye. Sweet and all, but seriously people, a girl like me needs her beauty sleep. Badly!

J (three year old monster extraordinaire) was a royal pain in the neck. He woke up at 5am wide-eyed and bushy-tailed, and threw all manner of tantrums for the majority of the morning. My mother was supposed to come early to watch him until it was time to drop him off with the nanny so that I would have plenty of time to get to my appointment. Instead, there was an accident on the beltway, and her 20 minute drive took her an hour and forty minutes, so I was running even later than I wanted to be, Julian was screaming that he would NOT leave the house without seeing Grammy, and the cat wouldn't leave me alone just to top it all off. Finally, finally, I got Julian out the door, got my mother to agree to meet me at the nanny, and I was on my way. Late, but still plenty of time under normal circumstances.

And then I ran over a squirrel. Now, seriously, how much is a girl supposed to be able to take? I've been doing pretty darned well with this whole emotional-rollercoaster miscarriage thing. Pregnant one day, not the next, basic suckage, kidney stone, obvious smiting from G-d, whatever. I've been handling it pretty well. But running over a squirrel? I lost it. Completely. The poor little creature never did anything to me! Argh. All in all, a decidely not good morning.

By some miracle, however, I did manage to arrive on time for my appointment at Shady Hell with Dr. S. I'd like to come up with a clever name for him, but right now I'm so irritated that I'm not sure I can be that creative. Back to my appointment. Here are the basics:
  1. Dr. S. was appropriately sympathetic for my loss. I cannot fault him for that. He was sensitive and kind and appropriately mannered and so on.
  2. Dr. S. wants to do more IUIs. I don't know how many. Presumably one and voila I'll be pregnant and angels will sing in heaven and I'll feel badly for giving G-d the silent treatment and so on and so forth. Pardon my disbelief. Dr. S's theory (not surprisingly) is "well, it worked!" Yeah, 8 months, four cycles and a lot of throwing up, and it worked.
  3. I told Dr. S. that I threw up almost every single day that I took Follistim (it's true!). I also said I was okay with the fact that the doses would be higher with IVF and that it would mean more throwing up, because the odds of success with any single IVF cycle are much higher than the odds of any single IUI cycle. Not necessarily, he said, in light of the fact that I definitely had a success with IUI. Could be my odds are around the same. I find this extremely hard to believe. Anyway, the point is that he's recommended I switch to Gonal-f, which I already hate based on their stupid syringes and dosing pen. They are completely dumb and inflexible for the teeney weeney dosing that I need.
  4. I have to have bloodwork done to show that my HCG level has gone down to <5.
  5. After my HCG level has gone below 5, I shall wait four weeks.
  6. At four weeks, I shall call my nurse and say, "See, I told you I wouldn't get a period on my own."
  7. I shall then report to ye old local vampire hangout (phlebotomy lab) to have blood drawn to check my HCG (wouldn't be good to start a cycle if it turned out I'd gotten pregnant in the interim, now would it, boys and girls?), E2 and P4. (I know E2 is estradiol, and I think P4 is progesterone, but I'm not entirely clear why they check those before I can take provera)
  8. IF it turns out that I am, indeed, pregnant at that point, I shall report directly to - who the hell do you think you're kidding? Move along, nothing to see here.
  9. If it turns out that I am, more likely, not pregnant at that point, I shall proceed to take provera for either 5 or 10 days depending on how Dr. S. is feeling that day. I shall be a cranky, cranky Karen while taking provera (which, incidentally, also makes me throw up... seems to be a trend... funny that I didn't throw up while I was actually pregnant)
  10. Several days after finishing a round of provera, I should, in theory, have a period. On Day one, I call my nurse, and schedule day 3 baseline ultrasound and bloodwork (when they will, AGAIN, check my HCG, E2, and P4). And so the rest, as they say, will be history. Either that IUI cycle will work, or it won't and we'll do this exciting dance for however long they make me. Thrilled I am not.

A friend of mine very insightfully pointed out why I am so upset about doing IUIs again. She suggested I ask Dr. S. precisely how long I should keep doing the IUI dance before inevitably all roads lead to IVF. She is quite correct, because really the problem for me is not knowing where the next decision point is. If I knew we would do this 1 or 2 or 3 more times, I'd be good. If I'm supposed to do this ad infinitum until someone realizes it's not working, that's not okay for me. Therefore, I must know how many times to keep doing this ridiculous dance. And I know that if it works, I'll feel badly for calling it a ridiculous dance, except, oh wait, that's right, I won't feel badly about calling it that, because you know, TICK TOCK! I'm seriously wasting time here and I HATE THIS.

I still feel a bit like I'm doing this completely blind, because I still don't know if the miscarriage was caused by a genetic abnormality that we're predisposed to creating, in which case this is all for naught. I'm hoping I don't have to go through several more miscarriages just to prove to everyone that IVF with PGD is the only answer (I'm not advocating that it IS the only answer; I'm hoping that it is NOT the only answer). I know that it is absolutely no one's fault that I don't have the genetic analysis and that there's no more information to be had, but I'm frustrated. Since my HSG last year was normal, there's no reason to believe there's a uterine abnormality that's caused all this. Dr. S. doesn't think I need another one yet or any other more invasive test because the HSG would have shown what he needed to know if there was anything to see.

Other miscellaneous notes:

  • I shall resume taking Metformin XR, 1500 mg/day immediately.
  • I can absoultely take Aleve, Codeine, etc. for migraine relief. I may absolutely not, under any circumstances, take Depakote unless I'm going to (hah!) use birth control.
  • I do not have to see Dr. S. exclusively. If I want to get a consult from one of the other doctors, I can do that. They work as a team, though, so it's probably not worth it. Plus. Dr. S. is the head dude, it's his protocol that's made the clinic so successful, and apparently from the endocrinology end of things, he's the man... the best of the best as they say.
  • Seth and I must both have our infectious disease testing re-done. We have to prove annually that we do not have HIV, Hepatitis, or Syphillus. Not a problem, though there was that one night of indiscretion in Cancun... oh wait, I've never been to Cancun.
  • I do not have to prove that I'm immune to chicken pox. This is good, because I am not immune to chicken pox and I apparently never will be. I do, however, have to sign a waiver annually saying that I won't hold them responsible if I get chicken pox while I'm pregnant and my baby is born with feathers.
  • I had to sign a big long consent form (in order for them to give me a script for metformin) stating that I understand that technically speaking metformin isn't indicated for PCOS. Whatever. They have so many copies of my signature on file I wouldn't be surprised if I had accidentally signed away my first born (oh the irony!) to them.
  • Shady Hell still owes me close to $2000 for a cycle that I paid out of pocket that was covered by insurance. They still have not issued said refund. Today, for the third time, my financial coordinator assured me that the refund was authorised and would be processed, mailed, and arrive in my mailbox within about 2-3 weeks time. Yeah. I'm holding my breath.
  • I still have 3 IUIs preauthorized by my insurance good through 2/26/07. I have 2 IVF (+ICSI and Assisted Hatching, if needed) authorizations good through 4/30/06
  • I need an updated pap smear. Because, you know, I might have cancer now. Because G-d hates me. Right. I know they have to have one every year and it's how they keep their insurance premiums down. Mostly, I'm irritated that I forgot to ask Dr. B. to do one at my D&C followup visit. I knew it was coming due and I forgot about it. I have an appointment for that on 11/21 at 9:30am. The good news is that should be the week before I start provera, so the timing should work. The bad news is that it means YET ANOTHER gynecologic exam.
  • I should have my OB send Shady Hell the surgery report from the D&C and any bloodwork they ran.

And that, as they say, is that. Nothing more to report here in irritated perky-land. I hope you are all having better days than I am!

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Comments
marag From: marag Date: October 26th, 2006 02:16 am (UTC) (Link)
It's almost comforting to know that Shady Hell's doctors are just as annoying as GIVF's were. All we wanted was a [expletive deleted] answer to the question "How many times will we try this?" And we never ever got it. The doctor would start going on about this and that and the other thing and we'd wander out in a daze.

Obviously I hope that you get pregnant on the next IUI attempt, but I totally understand your dubiousness. I was dubious also. And correct, I might add.

IVF sucked, but not much more than IUI is sucking for you, so I hope you get to go for it.

Oh, and I made Avi do all the stupid dosing for the Gonal-F the one time we used it. It was his job to fiddle with the little bottles and diluent and crap. It was my job to whine and get stuck with the needle.
estherchaya From: estherchaya Date: October 26th, 2006 02:23 am (UTC) (Link)
I need 66 IUs. The dosing on the stupid syringes they provide are 37.5 IUs, 75 IUs, 150 IUs, and up. There are 600 IUs per 1ML.

I called Seth and told him I was going to need his help with the math because I just couldn't wrap my brain around it. Before I'd even finished explaining the details, he said, "you need 0.11 MLs."

Oh. Sometimes having a pharmacist husband is extremely handy.
(Deleted comment)
estherchaya From: estherchaya Date: October 26th, 2006 11:37 am (UTC) (Link)
Good point on the syringe replacement factor. Fortunately, we have lots and lots and lots of 1ML syringes and since my supergenius husband did the math for me, I'm golden. :)

I'll be happy to take the Gonal-F off your hands (even though I'd really rather stay on follistim, since nausea or not, I know it works). *hugs*
(Deleted comment)
estherchaya From: estherchaya Date: October 27th, 2006 02:03 am (UTC) (Link)
Well, Delaware's not far from here, and I won't need it before December, so surely I can drive there. There is also the good old fashioned postal service, but that's less interesting.

You guys are busy this Sunday. Next Sunday Seth and I are going to Cirque du Soleil. How's the Sunday after that for you guys?
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marag From: marag Date: October 26th, 2006 05:59 pm (UTC) (Link)
Exactly! I'd stare in dismay at all the little bottles and my brain would turn to goo. Then I'd wave at it all and say, "Here. This is your problem!"

Except the time the pharmacy inexplicably gave us a different-sized bottle of HCG, containing the exact same ingredients. But we thought it was the wrong size and were running around in circles freaking out, because we'd always just used the whole bottle before that and...well, long story short, a friend finally calmed us down and got us to look at it rationally.

Ugh.
(Deleted comment)
estherchaya From: estherchaya Date: October 26th, 2006 11:35 am (UTC) (Link)
Yes it should be 07. I'll change it later (no time now). Thanks for pointing that out.

I don't think it all sucks. I don't mind the medicine, the doctors, the ultrasounds, the whatever, as long as I get a kid in the end. It's the waiting that I find interminable.
kmelion From: kmelion Date: October 26th, 2006 04:25 am (UTC) (Link)
JOOC, why were you off the Met? I take it for PCOS and from what I've read, it can help prevent first term miscarriages. It's up in the air regarding later term miscarriages.

I go to the RE on Sunday to find out how much longer I need to be taking the various drugs I'm still on, Met included...
estherchaya From: estherchaya Date: October 26th, 2006 11:34 am (UTC) (Link)
The studies are mixed in using metformin in the first trimester. Some say there's a possible benefit to preventing early miscarriages (I was just barely 2nd trimester, so it's N/A to me anyway), Some say there's no known benefit or drawback either way, Some say it's too risky b/c there might be adverse effects on the fetus. Every doctor has a different opinion on it. My RE was adamant that I stop taking it around 6 weeks, I think. So I stopped taking it. I wondered if it would have been better to have stayed on the metformin, but I don't think it would have prevented this particular miscarriage. I expect it will be a long time before I have to worry about asking the question again. It was on my list to ask the RE yesterday, but it seemed like the least of my problems when all was said and done.
estherchaya From: estherchaya Date: October 27th, 2006 02:08 am (UTC) (Link)
I must amend my original comment. A year ago when I researched the metformin issue, things were far more equivocal than the current studies look. Still, I do know that there are a lot of doctors who are very conservative about metformin use during pregnancy, so the answer really does vary based on which doctor you have.

But now I'm looking at the more current studies and I can't find a reason NOT to consider staying on metformin if I get pregnant again. I am not, however, going to bring it up with the RE. I'm going to talk to my OB about it instead, because he's the one responsible for my obstetrical care and choices.

Thanks for the heads up.
beaniekins From: beaniekins Date: October 26th, 2006 04:31 am (UTC) (Link)
I know it's kind of wrong to be cheering the squirrel gone from the world.

butIkindofam.

Sorry it happened to you though.
estherchaya From: estherchaya Date: October 26th, 2006 11:43 am (UTC) (Link)
I forgot about your mission for squirrel genocide. Glad to be of service to the cause.
hannahsarah From: hannahsarah Date: October 26th, 2006 06:10 am (UTC) (Link)
1. The squirrel was obviously suicidal. You did him a favor.

2. If they can get DNA from a dinosaur's toenail, why can't they do a panel on the fetus? I would kick and scream - a lot.

3. Can you get a prescription for Meclazine, or some other anti-nausea drug? I know that there are some out there that are OK with pregnancy, etc.

4. {{{hug}}}
estherchaya From: estherchaya Date: October 26th, 2006 11:40 am (UTC) (Link)
I have phenergan, but I can't work when I take it; it makes me too drowsy. It's not so much that I mind the throwing up. I can handle it. I just would prefer to have higher odds of success if I have to put up with that.

They couldn't do the genetics on the fetus, because the ER didn't put it in the correct solution for genetic analysis. The ER followed proper protocol under normal circumstances, but the solution that they normally use precludes genetics. They weren't able to run genetics on the remaining tissue from the D&C either, which my doctor told me would likely be the case. It's no one's fault, it's just frustrating.
ailsaek From: ailsaek Date: October 26th, 2006 10:51 am (UTC) (Link)
Blah. Ugh. Fertility doctors. Pfui. I hope the rest of your day goes better, and that the meds they will let you take for migraines work.
estherchaya From: estherchaya Date: October 26th, 2006 11:42 am (UTC) (Link)
The Aleve and Codeine help make the pain tolerable, but I build up a quick tolerance and start getting rebound headaches after a while (which are even worse than migraines). The problem with trying to get pregnant or being pregnant is that I can't take anything prophylactically to stop the migraines from happening in the first place. Still, it's a small price to pay if it means I end up pregnant.
From: have_inner_lady Date: October 26th, 2006 02:30 pm (UTC) (Link)
Yuck. Too many things in the way. I hope something turns out unexpectedly simple for you today.

Thanks for the laugh over, "...and my baby is born with feathers." :-D
estherchaya From: estherchaya Date: October 26th, 2006 10:30 pm (UTC) (Link)
I had a really good day today. And I'm glad SOMEONE laughed at the feathers comment!
mrn613 From: mrn613 Date: October 26th, 2006 03:55 pm (UTC) (Link)
Have you ever had an autoimmune and clotting panel done? Seems like it might be worth investigating, especially since you had first trimester bleeding.

And you already know I think you should be doing IVF. Since you authorization ends in April you almost need to be getting ready now, since you have to wait four weeks, and then cycle again, in order to retrieve in January.
estherchaya From: estherchaya Date: October 26th, 2006 09:24 pm (UTC) (Link)
- Yes, I've had an autoimmune and clotting panel done; nothing alarming came out of that. First trimester bleeding was due to the subchorionic bleed, as it turned out, and that's extremely common, so my OB wasn't alarmed (nor was the RE)

- I agree that I should be doing IVF. Not so worried about the authorizations expiring. It's very easy to get the insurance company to issue an extension. I just wish I didn't have to even think about this dragging on past April. I'm so ridiculously tired of this. I know a lot of people have gone through this far longer than I have, but isn't FOUR YEARS enough?
eyelid From: eyelid Date: October 26th, 2006 07:25 pm (UTC) (Link)
If you're insurance-approved for IVF, why won't the clinic just do it already? Is there another clinic around that will? My clinic was like "hey, whatever you want to do, we'll do it, just pay us."
estherchaya From: estherchaya Date: October 26th, 2006 09:25 pm (UTC) (Link)
I think the concern on the part of this RE is staying as minimally invasive as possible. I could switch clinics, but I'd be starting all over again with insurance authorizations if I did. If I can get my question answered of how many times are we going to do this, then I'll do the IUI for X number of times. If no one will give me a hard answer, I will force the issue.
eyelid From: eyelid Date: October 26th, 2006 09:54 pm (UTC) (Link)
I'm probably being cynical, but I can't help wondering if the RE's actual priority is making sure you do as many procedures as possible.

You should do whatever makes you most comfortable, of course, but I think for myself I would be spending the next 6 weeks the doctor wants you to wait getting myself those insurance authorizations for another clinic.
estherchaya From: estherchaya Date: October 26th, 2006 10:28 pm (UTC) (Link)
It wouldn't be in the clinic's best interest to do that. IVF is their cash-cow, not IUI. It would take 6 IUI cycles to equal the cost of one IVF. Medically speaking, there's no reason not to continue doing IUIs. It's an emotional issue for me, not a medical one. Frankly, given that the authorization is there for IVF and it is therefore not a cost-factor for me, I'm surprised he wasn't all for IVF, because odds are in my favor that it would boost their IVF stats. IUI stats are not reported to the CDC in the same way.

I spoke with another RE recently (casually, not officially), and his recommendation was also to stick with IUI because of the physical toll that IVF takes on your body. I get it. I just don't love it.
eyelid From: eyelid Date: October 26th, 2006 10:33 pm (UTC) (Link)
what is the toll?
estherchaya From: estherchaya Date: October 26th, 2006 11:45 pm (UTC) (Link)
IVF is far more invasive than IUI. While I personally don't have an issue with this, it's a big issue for a lot of people. My clinic is fairly conservative with a person my age with my history. Their goal is to achieve a healthy, viable, singleton pregnancy in the least invasive manner possible. I respect this goal and I think it provides a good framework for making valid medical decisions about my care.

Some people do IUI without ovulation induction, but I don't. I take gonadotropins, the same drugs I would take with IVF but in smaller doses, and induce ovulation with HCG before my IUIs. This means I'm already doing basically the same thing as I would with most of an IVF cycle, but on a much smaller scale.

The goal (in someone my age with my history) with IUI and ovarian stimulation/ovulation induction is to produce 1 or 2 mature follicles for ovulation induction. The goal in IVF is to produce as many possible mature follicles, without any one or two of them coming out as the leaders of the pack. This significantly increases a woman's risk for OHSS (Ovarian Hyperstimulation Syndrome). In a woman like me, with PCOS, that risk is already much higher, because we are "super responders" to gonadotropins (hence I take teeney teeney doses of gonadotropins to produce my one or two follicles at ovulation time). With the doses in IVF, the side effects are an order of magnitude greater than with the doses I take for an IUI cycle and the side effects are already fairly unpleasant at the IUI dosing.

Egg retrieval is about as invasive as it can get, what with sending a needle through the vaginal wall to aspirate the follicles on the ovaries. This is, of course, done under IV Sedation (some places actually do general anesthesia, which in and of itself is not without risks).

There is also the emotional stress in an IVF cycle that isn't nearly as pronounced in an IUI cycle. Aside from the hormonal ridiculousness that is worse with IVF dosing than with IUI dosing, there are far more hurdles to get through to get to transfer. First, how many eggs are retrieved? How many fertilize by the next day? How many survive to day three? Will you do a day three or day five/six transfer (up to the embryologist)? If you do a day five transfer, how many make it to blastocyst stage? If you're lucky and there are multiple good quality blastocysts come day five, how many will you transfer? What will you do if your two transferred split and you end up with quads? (I'm not kidding, this actually happened to a friend of mine... apparently something about IVF increases the rates of that happening) Each of those milestones/decision points is a source of stress.

All in all, I think IVF is completely worth it, but there's no denying that it is physically and emotionally far more invasive and far more draining for the couple, particularly the woman. I definitely respect that my clinic didn't start out with "All roads lead to IVF, so let's cut to the chase." In fact, that would have made me very wary, because I would have wondered if they were saying that because they make more money off of IVF. A lot more. I definitely feel that the clinic as a whole is keeping my specific, individual circumstances in mind when making recommendations for my care.

My current feeling is that I have an OB/GYN appointment next month for an annual exam. I am going to ask my OB/GYN a number of questions, one of which is what HE thinks is my best course of action (IUI vs. IVF). I have nothing but respect for his opinion and I know he'll take me seriously when I talk to him about it. (The other is whether it would make sense for me to stay on metformin if and when I get pregnant again, but that's a whole other issue) Assuming I don't hear differently from my OB/GYN, what I will likely do is one IUI and if it fails, push to move on to IVF. At that point I will have had 5 IUIs and I'm just tired of it, despite the going theory that since it worked, there's no reason to continue doing it. I actually wholeheartedly agree that there's not a compelling medical reason to move to IVF at this point. I just don't want to wait around any longer. Four years of waiting is enough.
(Deleted comment)
estherchaya From: estherchaya Date: October 27th, 2006 02:02 am (UTC) (Link)
If Seth and I had the same exact issues that you and Rebecca had, my doctor would absolutely have advocated IVF with ICSI. I know this because of some specific conversations that my doctor and I had about this. I'll be happy to elaborate outside of LJ if you'd like, but it's not that important.

Our issue, 100% is that I do not ovulate without medical intervention. There is absolutely no medical reason, then, that IUI shouldn't be the first line of treatment, and now that we've proven that it can work, and that I don't have implantation issues, and so on, medically speaking, there's a good argument for saying, let's stick with IUI. LIke I said, I don't like it, but I don't think it's a medically inappropriate choice.
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