Big plans, many questions

This is a big week - we have new patient consults with two clinics (Monday and Wednesday) and in between I have my first (and very full day) at my new job. All of which have the potential to be good. I’m trying not to think about the job until then - trying to savor the last days of a summer in which I should have accomplished more. So instead, I thought I’d share the absurdly long list of questions we’re taking with us to the consults. I suspect much of this will get covered in the consult, so I won’t actually have to ask, but since we’re trying to decide between two clinics, I figured we should have a comparable dataset from each clinic from which to work. Except that I suspect it will, in the end, come down to the things that are peripheral to the list - the vibe, the feeling we get from the staff, the feeling we get from the doctor. Both clinics are highly regarded. Both have good success rates on the (totally out of date) CDC statistics. Both are in town (though one is more convenient than the other). Both clinics seem to do lots of ICSI, blast transfers, and FETs. Both have well-trained embryologists on staff. In the end, only a few of my questions will be deciding factors. Based on my initial dealings with them, I already have a tentative preference. But I’m trying to keep an open mind until Wednesday. And then I’m all about choosing one and moving on.

Without further ado, here’s the list of questions:

Ambiance (to observe, not to ask, obviously)

• What's in the waiting room? (Are there pregnancy magazines? Toys? Comfy chairs? I will spend a lot of time here - how does it feel?)
  
• Is the receptionist friendly? (Also all other staff I meet?)
  

Procedural

• Number of patients cycling each month? How many retrievals and transfers do you do each week?
  
• What are the embryologist's qualifications: degree, experience, etc.?
  
• Are there any times when they don't do cycles (holidays, etc.)?
  
• Will we be working exclusively with one doctor or will we rotate depending on availability?
  
• Who does morning ultrasounds? What are the hours for labs/monitoring? How long should I expect to be here each morning for monitoring?
  
• How often do you perform ICSI? Blastocyst transfers? Frozen embryo transfers?
  
• Do you have specific expertise with PCOS? What kind of protocol might you suggest to reduce the risk of OHSS? What percentage of your patients experience OHSS?
  
• What are your criteria for canceling a patient's cycle? Who has the final say - the RE or us? (Thanks, unfortunately, to InSpring and Thalia for this one.)
  

Communication

• Who does callbacks with instructions? With good or bad news? If we have questions the nurse can't answer? How long does it take to get a call back from the doctor?
  
• Will we have emergency access to the doctor after hours (on call)? By phone or email?
  
• Is there a nurse or coordinator I'll be able to speak with consistently (same person throughout the cycle)?
  

Specifics

• How do you feel about the use of acupuncture in conjunction with an ART cycle? Do you allow the acupuncturist to do treatment on site before or after transfer?
  
• What do you think our prognosis is? What kind of protocol do you recommend for us? How many embryos would you recommend we transfer in an IVF? Is there any merit in doing another IUI? What medications would you use in an IUI or IVF?
  
• Do you prefer patients who ask detailed questions about treatment, diagnosis, or symptoms? Are you comfortable with patients requesting detailed information about their treatment? (In other words, how do you deal with involved, well-informed, detail-oriented patients... patients who bring in obsessively long lists of questions they’ve vetted with their infertile friends...patients who aren’t going to stop asking questions even after choosing a clinic...patients with no patience like me?)
  

Given the ridiculous length of this list, I’m not so worried I’ve forgotten something anymore, but if I have, please tell me. What would you ask?

More fun search terms

Apparently I’m a budding Miss Manners over here:

ettiquitte for teens
breakup ettiquitte

I think it’s because I misspelled ettiquette in a post, so when people also misspell it in their search, they get results from other people who can’t spell (like me, apparently). Have I mentioned that I’ve developed some bizarre version of adult-onset typing-dyslexia? It’s very odd

Then there’s the “you found me HOW??” category:

lying and saying your pregnant and your not

This time it’s not about my typos. Which is good, because that leaves me with the possibilities - were they looking for instructions? Ways to get back at someone after this?

And of course, the really bizarre:

I want to buy tea cups dog

I can’t even imagine what they were going for here. Tea cups for a dog, maybe? Do dogs drink tea? I am so confused. It makes up for that last one, though.

Tentative understandings

I had an interesting conversation with a friend of mine the other day. Generally our relationship is pretty uni-directional (she calls me to talk and we mostly talk about her) but I told her vaguely what was going on with us a few months ago, so now it comes up in conversation occassionally. We've been talking more regularly lately because she just got engaged and so there's lots of wedding stuff in her life for us to talk about. But this time, after an hour of “this venue or that venue” and “what kind of wedding dress” and all that, she asked how things are going with us. So I told her how we had maxed out our options at the ex-clinic and are meeting with new clinics in anticipation of a likely IVF/ICSI.

Now, this friend of mine is a bright person. She’s a lawyer. Her dad is a neurologist, and she’s been around medical stuff her whole life. She’s had her fair share of medical scares and mishaps. And she knows nothing about IVF. But she’s willing to ask, and seemed to want to know what it entailed. So I explained. Every so often she’d ask a question. At one point, she said, “This is probably a dumb question, but do they just pick one sperm, or do they put the egg with a bunch of sperm or what?” And I was able to explain that no, that’s actually a really good question, and that they’re both options. And then I explained ICSI.

It got me thinking about people who aren’t going through the process, and what it looks like from the outside. I ranted a bit about Inconceivable and my friend and I talked a bit about gestational surrogacy and why I’m concerned about the show’s portrayal of infertility. But it also got me thinking about something Beaver Girl said a while ago (here and here) about the possibility that even a bad representation of infertility is better than none at all. That people will start to have a sense of what the terms mean and what the process entails. (Presuming, of course, that they’ve got a halfway decent medical consultant on the show to keep things at least mostly accurate. If not, I’ll organize a letter-writing brigade right away, because that would be absolutely unforgivable. Of course, if they do like CSI, it will give people all sorts of unreasonable expectations about the innovations of technology. But I digress. Sort of.)

Another thing. We’d had my in-laws read the first couple of chapters of a well-written book about infertility, and I think it contributed to my MIL’s sudden comprehension of what we’re going through. So I figured it couldn’t hurt to try out on my mother. It took her a bit longer to get around to reading it (she insisted on buying her own copy of the book, so I guess I won’t have to explain the basics of my various tests and procedures anymore) but now that she’s read the first couple of chapters she seems to be trying to get it. “This sounds like you,” she said. I said something vague about the author’s tone (like a blogger, which is to say, like the best possible kind of snarky friend). But later I thought, it’s not that her story is like mine. It’s just that she’s managed to capture what it’s like. (At least, what it’s like for many of us.)

Mom will be here for a quick overnight visit tomorrow - we’ll see how this plays out.

Nothing we didn’t already know

We had our postmortem* with Dr. L yesterday. It started somewhat badly, both because I was a bit peeved that we had to pay for a visit to discuss how they don’t really have anything else to offer us there, and because the nurse (I think she’s actually a medical assistant) made me pee in a cup so they could do a pregnancy test. It’s an obnoxious habit they have. I understand testing before certain procedures (the HSG for sure, and even the IUIs - someone less obsessive and more ovulatory than myself could, I suppose, be pregnant and not know, and sticking things in the ol’ ute isn’t so good for a pregnancy). But why I had to do a pee test yesterday is beyond me. I didn’t even have to undress for the appointment.

Dr. L pretty much told us what we already knew. I didn’t respond to the Femara. The Kruger results meant that ICSI might be a good idea. But, some people have gotten pregnant with the same or lower Krugers, so we could try an injectable/IUI cycle and see. I asked if there was any reason we shouldn’t just move on to IVF w/ICSI. “If you have the resources to do that, it’s probably the right time,” she said. And then I thought, again, how lucky we are to have a family that can support our IVF efforts and how if I hadn’t done so much research I might have listened to only the surface of her statement and thought it was worthwhile to keep cycling with them because it’s less expensive.

I did ask her about the evil-HMO hospital’s OB/GYN and NICU services - because, you know, there’s this theory that I might need at least one of those at some point. She had positive things to say about the doctors for both, and says that there are Nurse-Midwives on staff, too (though that doesn’t mesh with what little I’ve read so I need to check further). In light of the recent conversations on other blogs it was on my mind. Not that I’m anywhere near needing an OB or anything.

She did tell us to have faith in God and each other, which felt like the Godspeak version of “just relax”. Which she got very close to when we were leaving - telling us about people who had gotten pregnant when they stopped trying or worrying about it, and who didn’t even know because they didn’t get regular periods and then suddenly they were very pregnant. I know it happens, occassionally, but I can’t even imagine NOT KNOWING I was somehow pregnant. How would I miss something like that? So, she didn’t quite say we should relax, and when I made a face she said, “I know. Easy for me to say, right?” -- which was a lovely observation coming from her.

Instead of just not thinking about it, as she suggested, we have our new-clinic consults the week after next. I received a new patient packet from one of the clinics yesterday, which I thought was appropriate timing. A bit depressing, though, since I’d failed to account for the amount of time it will take to get tested and integrated into their treatment schedule. But at least it’s progress. And I am trying to not think about it too much between now and then, because I’ve already made a long list of questions and requested that my old records be sent to the new clinics and scheduled another few acupuncture treatments and I’m not sure what else I can do. So hell, maybe I’ll try “not worrying”.

* A postmortem is the meeting after an event or project has concluded to discuss what worked and didn’t work:

“Sooner or later this situation happens to us all: You and three others just spent the last thirteen months of your lives and careers working on a special corporate project. Unfortunately, that project produced less than satisfying results. Now, instead of basking in the glow of your team's achievement, management asks you to organize a review meeting for the failed project. That's right, you've landed in the dangerous territory of the post mortem.”

Sounds familiar, doesn’t it?

The Learning-how-to-be-bitter Channel

I was watching A Baby Story (because apparently when I’m depressed I’m a sucker for punishment) and the family was having their second child - a mere TEN MONTHS after the first. I guess they got pregnant the first time they had sex after baby #1. (They called them Irish Twins - isn't that cute? No.) All together there are something like 15 cousins under the age of 10 in their family (from maybe four sets of parents). Aside from insane jealousy (seriously, they got pregnant again when baby # 1 was 6 weeks old? C’mon, share the wealth, people...) I can’t help but wonder if there’s another sister-in-law in the family someplace that doesn’t have any kids. I can’t even imagine being an infertile in the midst of such an excessive display of fertility. That must suck. I guess in comparison my life is just peachy.

I do not think it means what you think it means.*

I found this article by way of a post over at Blogging Baby (which I don't usually read, so I’m not sure how I came across it this time) about the new NBC show, Inconceivable. Basically, the producers of the show came up with the idea after sharing stories of the trials and tribulations of fertility treatments. Because they’re two gay guys (not a couple) who both had kids using gestational surrogacy.

More power to them, to be sure, but this really explains a lot. The show seems like it’s going to focus on the cutting edge technology - the stuff that people look at and think, “they can really do THAT now?” Like using the combination of an egg donor and a gestational surrogate to help a gay couple have a baby. It’s new frontier for most people. And that’s fine. But the bulk of people undergoing fertility treatments aren’t trying to be cutting edge, they’re trying to build families. And that’s emotional, and hard, and if they already were a heterosexual couple and assumed they had the necessary bits between them, then it’s brutal and can feel like a failure to do what comes naturally to so many people. (Just to clarify - I have nothing against gay couples using surrogates, or lesbian couples using inseminations, or whatever else. And I know those situations can be fraught with their own concerns and frustrations, too. But it’s a different kind of situation, in some ways.)

It was the jaw-dropping thing that convinced writer-producers Marco Pennette and Oliver Goldstick, co-creators and executive producers of the new NBC drama "Inconceivable," that their experiences with in vitro fertilization and surrogate pregnancy had the makings of a television series. (From the Yahoo article.)

See - shock value. New technology, far removed from what “normal” reproduction looks like. “Jaw-dropping” technology. I guess that’s what sells. But it doesn’t inspire much confidence in the accuracy of the show - hopefully they’ll get the terminology right (transfer vs. implant, for example) but I’m not so sure they’ll capture the experience.

As the program description suggests, the “noble quest” to “help desperate couples give birth” will be balanced by the clinic staff's “own occasional adventures involving sex, deception and secrets.”

Actually, I don’t think the show is really about fertility at all. I think it’s just a new backdrop for the same old ensemble dramas we see everywhere else (the right balance of science a la CSI and soap opera a la Desperate Housewives seems a timely choice, given the ratings). So maybe it won’t really suck that much, since it won’t really be about fertility.

Plus, have you seen the graphic for the show? That egg isn’t going to amount to anything!



* "You keep using that word. I do not think it means what you think it means." (The Princess Bride, of course)

decisions decisions

Thank you all for your understanding comments - it’s nice (and of course incredibly reassuring) to know that I’m not imagining the insanity that is the soon-to-be-ex-clinic. In answer to the questions, yes, some of it is an insurance issue - the evil-HMO only covers services they provide, and they don’t provide any other injectable options beyond the Repronex (and they DEFINITELY don’t provide IVF). And yes, I’m looking into a new clinic. We have consultations with two potential clinics in a couple of weeks. They will not be covered by insurance AT ALL, but J’s parents have been incredibly generous with an offer of financial help so we can do IVF if we need to. And that’s looking very likely. And no, I’ve never ever seen people chatting it up in the waiting room. Eyeing each other warily, sometimes, and an occasional half-hearted smile, but never chatting. I wish we could all sit in the waiting room together, instead. It could be quite the happening party, don’t you think?

I’m going to spend the next couple of weeks (because otherwise I’d spend that time twiddling my thumbs or something) compiling a list of questions for the new doctors at the new clinics, thanks in part to your suggestions. If you have further suggestions for things to ask or to look for while we’re at the clinics, please let me know. I’m counting on the shared expertise of the internets to help us make the decision. That is, which new clinic to choose, not whether to stay with the old one. I’m very sure about that part of the decision.

The last straw. Maybe.

This is really long. Sorry. I can't edit it right now because I have a paper I have to finish, so it will just have to be really long.

Yesterday I had my first appointment with my new therapist, who specializes in fertility issues and is a fellow infertile. So far what that means is that I don’t have to waste time and energy explaining terms and treatments and clinics and options and abbreviations. It’s a nice change of pace from seeing a therapist on campus in so many ways - this office is in a nice building, with a private waiting room and a comfy couch and a nice view from the spacious office. And the best part for someone like me is that there’s a separate exit - “one way traffic,” she said. Now that I’m not on campus, I’m less worried about running into someone I know (and even less worried that I’ll run into one of my students), but it’s still nice to be in a place where they recognize the importance of that privacy. The old therapist had quite a exchange with me about this where I felt like I was somehow being paranoid for being concerned about my privacy - so this is really a nice change.

On the opposite end of the spectrum, yesterday was also the day of the introductory class for the injectables program at the evil HMO clinic. I’m not sure what I was expecting - I mean, their initial fertility class was a joke, but this class was with one of the nurses from the fertility clinic (Nurse NBM, but still) and was only for people who had already been approved for injectables.

What I was not expecting was the presence of a 5ish-year-old child in the room during the class. Not cuddly enough to make me all fluttery and jealous. Just annoying enough to make me unable to ignore her. Just cute enough to make Nurse NBM interact with her during the class. I know it’s really hard to get childcare, especially for regular monitoring appointments, and that even the best plans sometimes fall through, but really. It was pretty inappropriate.

I know I’m Little Miss Overinformed, so I didn’t expect to learn much, but I also didn’t expect misinformation and misdirection from Nurse NBM. She began with a book of illustrations and showed us how the normal cycle works. (”This is the ovary, and it produces the egg. When you have sex, the semen is deposited in the vagina, here, and then swims up through here and meets the egg...”) The little girl was sitting next to her for this part and looked raptly at the pictures - I guess it was like storytime. Creepy.

NBM went on to guide us through the booklets of information detailing the clinic’s COH program. To their credit, they seem to have decent monitoring in place (which had been one of my concerns, since I hadn’t seen this evidenced in my previous experiences with them). They do daily bloodwork and sonograms during the cycle (in two different locations - so you have to drive to the network hospital for a 7:30am blood draw, and then back to the fertility clinic across town for an ultrasound at 8:30 - convenient, no?). They have voicemail boxes for you to call for your daily instructions. They’ll do monitoring on the weekends (which they wouldn’t do for my Clomid/Femara cycles). They start with BCPs to downregulate the ovaries. (Is this normal for an injectables cycle? It seems like they do it for scheduling purposes as much as anything else. It was funny watching her explain the concept of birth control pills, though. Not why they’re used in fertility treatment, but how there are different colored pills and we’ll be taking just the active pills and not the “vitamins” that you’d normally take during an off week.)

That part is all mostly okay, even with the annoying schedule. But they only use Repronex - no Follistim or Gonal-F or whatever. And I don’t think I’d be able to guarantee that I wouldn’t be seeing Nurse NBM all the time, since they take weekly shifts with the injectables patients (so either she’d be on that week or not, but I couldn’t just see someone else). And she went on and on about the risks of having multiples and their potential for birth defects and retardation and considerations of selective reduction. I know they have to do this before we sign the consent forms so that we’re making an informed decision, but it was really excessive and not all that informative. Mostly she just read the ASRM info sheets that were in our packets, and punctuated some of the points with her own examples and explanations. Oy.

And then we got to play with the needles, but not actually stick them in anything (not even oranges). After learning to do the HCG with the big needle, the little subQ needles look so damn cute I almost laughed. And this from a girl who is (was?) a major needle phobe. I’ve never even given myself a shot, and I already felt like a pro. (And the little girl was fascinated and kept getting up close to the needle so that I was somewhat worried she was going to get stabbed in the eye.)

I spent much of the time contemplating the other couples in the room - where are they in this process? Are they snarky? Is this the first time they’ve heard this information, or have they already done their research? I don’t know for sure, but I felt a bit more informed and jaded than the rest. I did joke with one woman before the class (she was the only one there without her partner, and the one I’d be most likely to be friends with) - she said something about her partner being the only one to miss it and how she wasn’t too happy with him about that, and I suggested that she tell him she needed to practice the injections on him since he wasn’t at the class. Fair’s fair, right? (She laughed and agreed, which is why I’d probably be friends with her. Having a sense of humor about all of this is key.)

If I had written this yesterday when I got home from the class I might be better able to explain how by the end of it I was certain that I’m done with this clinic. There’s no single point I can put my finger on (except for the limitations on drug options) but I’ve never been particularly pleased with the service there, and I’m not even sure we’re going to do an injectables cycle at all - IVF is looking more and more likely. And as we were leaving, I asked Nurse NBM why the clinic or the HMO doesn’t offer some kind of infertility support group and she suggested that I just talk to people in the waiting room. “Well,” I said, “I’d try, but since you can’t really tell if someone just had a miscarriage or is waiting, full of hope, for their first Clomid cycle, or is, like me, pretty jaded about the whole process it wouldn’t really be fair. I don’t want to intrude on someone’s pain or burst someone’s bubble of glee. But I also don’t want to be alone in all this.” And she didn’t really have a lot to say about that.