Is all this worth it?

Sometimes I wonder.. with all the effort, time and energy going into all these tests and treatments — is it all worth it? I’m tempted to ask my friends with infants and toddlers — did growing your family really add that much more to your life? Even though you’re waking up multiple times a night and battling stubborn toddlers — are you happy? Do you love your life? Would you have chosen a different path? Do you miss your old life?

In some sense, it’s strange for me to even think that — I’ve always known I wanted kids. I was the kid who would be playing with the babies instead of the ones my age. I’ve never seen myself as not-a-mom when I ‘grew up’. But sometimes, I wonder.

In other ways, I have a fairly happy life. I have a good marriage. A career that I’m (finally) getting a foothold in. A loving family. Supportive friends. Enough financially for our needs. Good health (barring the infertility related stuff).

Infertility is a weird beast. Sometimes it consumes so much of me that it’s hard for me to remember all that. These days, I measure time in cycles. I have 1 cycle of vacay. I start my new job in my next cycle. It’s just ever pervasive and even during my enforced break, it’s hard to not think of what the decisions are, whether different meds are working. Every day, there’s meds I take that remind me, yet again, that this is now a part of my life. Honestly, I just want this part to be over and soon. I want to stop thinking about taking various meds to get my body to function normally. I want to have the normal baby problems. I want my worries to be what stroller I should buy. Sigh. 2018! *crosses fingers*

In which I learn a little more about insurance

One of my personal summer projects is to tabulate all my healthcare expenses to evaluate just how much all these fertility treatments are costing us. How cheap are certain treatments/tests? Who covers them? How are clinics billing differently? I’d love any suggestions for questions to look into!

All of my day yesterday was in tracking down all my (fertility-related) bills, crossing them with my clinic receipts to see what each procedure/test costs. (Still not done. There’s several expenses that I haven’t been able to figure out what they were). Some of what I learnt is probably obvious to others but was a revelation to me.

Probably the biggest thing I learnt so far is the concept of an ‘adjustment’. Basically amount billed by doctor = amount I pay + amount insurance pays + magic money that no one pays. The magic money is the adjustment. Personally, I’m calling it fake money because it’s money that no one really cares about. The doctor doesn’t get it. The insurance doesn’t pay it. It just magically disappears from the system. Ofc, as my dad said, if you don’t have insurance that number becomes very real money. What irks me about it is the insurance company gets credit for that money. In their statements it’s “money you paid” and “what we took care of”. Umm, no you didn’t. Or did I miss something and magic money comes from.. the government? I’m not sure what other options are.

It’s actually a pretty big amount. Somewhere in the range of 50% of the costs seem to be this magic fake money. Diagram is still preliminary but the pink is the adjustment, purple is what the insurance company shelled out and brown is me. The “prep for cycle” is the birth control pills cost ($0 for me). “Gynec attempts” is the time spent monitoring in the gynec’s office + 1 clomid only cycle. I pay an awful lot for thyroid stuff – that’s because I’m on name brand synthroid because I had a weird reaction to the generic and I still have to deal with all the red tape to get that properly covered. Annuals are free to me. Good – that’s how a system should be designed. I included annual check-ups in this just because some of the testing/immunization was related to fertility.cost_split_by_payer.png

 

As for costs to date:

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Numbers are rounded so the totals might not work anymore 🙂 I’m actually surprised that the ectopic cost so much. After all, that’s an emergency issue that can happen to anyone. Isn’t that exactly what insurances are supposed to cover? We switched plans right before starting the IUI’s at the beginning of the year so some of the difference in coverage is from that. We pretty quickly hit our deductible but are (surprisingly) still well below our Out of Pocket max. Not sure we’ll hit it this year actually, even with an IVF cycle.

The interesting question to me was “How expensive am I to the insurance company?” A priori, I would think I’m an expensive patient – fertility treatments are expensive, aren’t they? But.. actually not so much. So last year, premiums = $1900. Money that insurance company paid out $1750. (Caveat – I only counted fertility expenses — there’s also hubby’s medical costs and a couple of non-fertility related costs for me. But those are pretty small). So.. they made some money off us. Even this year — our YTD premiums are $1600 (more expensive, lower deductible plan). YTD amount that they shelled out ~ $3000. Ok, that’s significant. But let’s not forget that this is employer sponsored so the insurance company is getting our premiums + whatever employer spends on it. Oh and the decade before this when I paid for insurance and barely used anything. So.. overall, even with fertility treatments, I’m actually still a good bet. Even if I missed some details, broadly that conclusion should hold, right?

More to come… I should have prefaced this post with the caveat that I know almost nothing about insurance. And all these are preliminary thoughts.

Happy News!

Well, not baby related. But I’m allowed to have not baby related good news (right? Sometimes it’s hard to remember other parts of life).

I graduated! I’m officially a Dr.!! Way too much of my life has been in pursuit of the degree so it’s such a relief to be done finally!

I’m excited for next steps too — I’m doing exactly what I wanted to which is a public policy version of the type of work I do now.

I have a month before starting the postdoc and so, have a bunch of projects lined up — putting together a photo/memoir album from my grad school days, knitting for various babies that are due (that’s its own unique bittersweetness), understanding insurance costs…

I hate my FSA

(Apologies for yet another rant. Actually no. That’s why I created this blog. To rant!)

Health insurance as a system doesn’t really make a whole lot of sense to me.

All of this morning was spent in dealing with my FSA provider. So we got yet another request for an EOB for the money we spent from there. I get the point of requesting such info – after all the FSA money can be used in, say, CVS to buy anything. How do you prove that it was used for qualified medical expenses? Or that it wasn’t used for, idk, teeth whitening at a dentist? But, please, do share, what can i possibly spend money on at a fertility clinic that’s not a qualified expense? No, please do share. On top of the annoyance of gathering all the documents and sending it to them, they give dates by date of payment while the insurance documents are by date of service. And these are from the ectopic when I was going in several times a week. How on earth do I correlate those together? I refuse to spend time trying to solve the knapsack problem for

Oh and let’s not get started by the communication methods. Why do all these places insist on faxing? Who even owns a fax machine anymore? Or if they have online portals, they’re some of the worst programmed websites I’ve seen. Do they intentionally hire cheap and not-good companies to code this stuff? And why are there so many ID numbers — I have my insurance number. Then my FSA number (which for some reason isn’t connected to the insurance one). Then employer id (which is somehow connected to the FSA but I haven’t figured out how). The FSA debit card number (which isn’t the ID). My social security number (which is sometimes an ID). Oh and did I mention that all this is through my husband’s employer so to get anything done, the master of the house has to give permission. (Not to imply anything about him – he’s super sweet. Just that this system has weird assumptions).

Anyways, I ranted at them. Not that it accomplishes anything other than getting my BP up. I felt kinda bad for the call center girl and ended up apologizing at the end of it. This whole system is ridiculous to me – when there’s a clinic involved, why not contact them? Or my insurance company? Why put all the onus on the patient (who has a gazillion other things on their mind)? Apparently HIPAA. But.. if that’s the case, knowing the clinic name + patient name should already be a HIPAA issue, no? Because no one goes to a fertility clinic for anything but.. fertility. Surprise!

I ended up just sending a dump of ALL my EOBs from that time period. May they have all the luck sorting it out.

#MicroblogMonday: Insurance

Can I just take a moment to comment on the ridiculousness of health insurance in this country?

I’m lucky in many many ways – I’m in a state covered by the infertility mandate and our insurance is quite good. I can’t imagine going through all these treatments and constantly having to check in about the financial status (and hats off to anyone who is doing that!). It’s not perfect and our out of pocket costs are still significant (one of my summer projects is tabulating infertility expenses).  Also our HSA provider has been less than amazing*.

Fundamentally, I find it so strange that, for so many people, infertility isn’t covered. It is an actual medical issue with medical diagnoses. And the resolution and treatments are not exactly something that’s solved without, you know, actual medicine.

Also as a PSA to all those people who think that IVF is a ‘luxury’ fancy treatment: No one wants to go through IVF. The whole process is hell. Why would anyone voluntarily choose this path??!


Why is contraceptive, fertility, maternal and pre-natal health is all considered costs to women and a burden on men? Last I checked, for anyone of those, a man was involved to create a baby. Why isn’t the insurance bill split between the two? It’s always treated as a women’s issue but a lot of it seems joint to me. Isn’t it in both parties interests to ensure a healthy baby and mommy?

Mostly this is a rant to all the (typically white male) politicians who say “why should I pay for someone else to have a baby?” Well, by that logic, why should I pay for your increased risk of heart disease (increased risk for males)? Or prostate exams/cancer? Or sexual dysfunction or skin cancer (light skin -> increased sun burn risk)? Or any X-linked disease? Or any genetic condition that you passed on to your kids ( I don’t have an Alzheimer risk, why should I pay for yours)? It’s a slippery slope (well, less a slope than a cliff) and obviously a ridiculous argument but still somehow is being made.


*Random HSA side story: We’ve been getting requests from our HSA to provide an EOB for the money we’ve spent at the fertility clinic. For starters, I really don’t know more than the basics of insurance and had to look up what an EOB was. Once I did, it made more sense to me that the HSA interface with the insurance company and getting information direction? Isn’t that easier and more efficient than putting the onus on the consumer to do this type of work? Also, the HSA money is quite literally my own money. Anyways, I called them, getting increasing frustrated at the “Ma’am, ask your insurance provider” responses (‘You asked for this damn document, not them. So you give me a response’). Finally I just said, “This is for a fertility clinic. What else do you think it was used for? What non medical expense can possibly exist at a fertility clinic?” And I could totally hear her .. just freeze and not know how to respond. Goes to show that fertility is still totally a topic that people are uncomfortable with — even in the medical field.

 

Random Musings

I’m done with one week of birth control pills. I’m probably just weird but somehow those pills are a tangible object of loss and I hatehate taking them. After all, if my baby was growing safe and sound, I wouldn’t be having those. And I’ve been counting down. Only 7 more weeks of this to go.

Do women actually take these for years on end? No wonder there’s such a high practical failure rate. And I somehow came across an article by a young woman who had a stroke which was caused by, wait for it, birth control. So that’s been comforting to my nerves.

Also, have all these women around me been taking them all the time and I’ve just been oblivious? I’ve been timing mine a little after dinner so days we go out, I’ve just taken it in public. Which feels super weird. But oddly enough, less weird than say, clomid. I suppose that makes sense — birth control is ‘normal’. No one would blink an eye. But admitting that I’m taking clomid (or whatever else) is admitting that we want kids. And we’re failing at it. And failing badly. It’s also made me realize that as much as we’re open with some friends, there are plenty who don’t have a clue.

I’ve lately been finding myself wanting to run around, hands in the air, telling those those couple friends who aren’t thinking about kids yet – ‘but your eggs! and sperm! do you know how many other problems exist? and how many failure points? and what the probabilities are?’ Of course last time I talked probabilities with a friend, they ended up pregnant in 2 months (even after major thyroid issues) and I ended up bitter. (To put myself in a slightly better light, we were talking about life plans and then I ended up doing a brain dump of all the reproductive-related information I’ve collected over the years such as BBT measuring and preseed).

Also, yep to Mel’s Infertility Manifesto. I feel like at some point, I’m going to break down and print a stack to hand out to anyone who says something weird/inappropriate.

Thank you Obamacare?

In one of life’s little ironies, I now have to start birth control. So weird. In order to get pregnant, I have to prevent myself from getting pregnant.

And I’m a total n00b (did I use that correctly?) – *quietly admits* I’ve never actually taken birth control before. I’ve never even seen a birth control pill pack (umm, no sisters, no idea what mom did, roommates/friends apparently never took it or were super discreet or had an IUD). Culturally, this seems so .. not-normal. So there I am with a gazillion questions about side effects and how to take it and the pharmacist looks at me as if I’m crazy. Is it really that weird? Waiting till marriage (or at least a long term relationship) isn’t that unusual, is it? Or choosing alternate forms of BC? Or just letting chips fall as they may?

And of all things about the cost of this whole infertility deal, this turns out to be the one that’s fully covered by insurance. Zero cost. (In more incidents of noob-ness, I took out my credit card wondering just how much this was going to hit the wallet.) Thank you, Obamacare?

And honestly, I’m envious of those who actually need this. In my mind, I can’t even fathom that. Like, people actually exist who have to try hard not to get pregnant? Even the ones I know who had no issues actually had to put some effort into timing or at least take a few months.

 

Next Steps

I’ve taken a step away from this blog for a couple of weeks. Mostly lots of personal reasons – I’ve been in the depths of thesis-sizing and in the midst of that, had to go across the country for a wedding.

Tomorrow we have an appointment with our RE to figure out next steps. Namely, do we try IUI again or go for IVF? In my head, the pros of IUI are that its an easier procedure with fewer side effects. Big con is that it carries with it a 15% risk of another ectopic (as does any method actually). Pros of IVF is that is controls the ectopic risk (not sure how. In reading, it seemed like IVF was a cause of ectopic but somehow it can control that risk?). Lots of cons — more side effects, more expensive, longer treatment protocol.

I think there’s a psychological factor too. It’s taken me a long time at each stage to admit I need a bigger step — for example, moving from the gynec prescribed clomid to actual IUI protocols took a while for me to admit to myself that I need it. After all, some people with PCOS clearly get pregnant. Right now, I’m just scared of IVF. It seems so involved and complicated. I worry about risks of OHSS (which I should ask my doctor). I think there’s also a sense of ‘saving’ harder treatments for when they’re needed. In some sense, I like having the cushion of “oh, if this doesn’t work, we can try IVF.” But on IVF, is there any such further out cushion? Added to that is the stress of starting a new job right around when I’d be starting whatever treatment I decide on. Do I really want to deal with egg retrieval surgery within the first month on a job? When I wouldn’t really be able to explain to my boss what’s going on? And the side effects just sound kinda scary to me. As do the injections but I’m trying not to think about that. Honestly, fear is a stupid reason to not doing something. But I guess it’s just if an easier-on-my-body protocol is available, why wouldn’t I give that a better shot?

From our last meeting, my RE definitely seemed to be pushing for IVF. Without the increased ectopic risk, I’d definitely stick to IUI — after all it worked. Admittedly not successfully but clearly I ovulated, sperm met egg, and zygote started growing.

Before this whole ectopic craziness, my husband and I had a conversation about what/when to do if the 3-4 IUI cycles didn’t pan out. My gut then was to take a break and wait till Nov or so, after I’ve been at new job a few months to try IVF. So some part of me is thinking maybe I should stick with that timeline — try IUI in Aug/Sept. If we do get unlucky again and have an ectopic, then that puts us around Nov/Dec for trying IVF. Then again, do I really want to carry the ectopic risk again? On the other hand, knowing that I have the increased risk, I know this clinic is going to be super particular about testing early so we’d have a head start.

Apologies for the rambling post — I’m going round and round in my mind about what to do. Hopefully my my RE can offer some clarity.

 

The Anatomy of an Ectopic Pregnancy

ectopic_spring2017

Presenting — the anatomy of my ectopic pregnancy, i.e. a pretty visualization of my last couple of months of hell. I’ve been looking forward to writing this post for a while. I’m weird, I know. It’s hopefully relatively self-explanatory — red bars are bleeding (with pretty-fied,  realistic colors), blue are the meds, progesterone in purple, and of course, the all important HCG in black.

The highlights:

  • Damn, this whole ordeal took forever. Start to end was 78 days. That’s 2.5 months!
  • The bleeding was like twice as heavy as a normal period. Cramped like crazy though. Good to know for a hopefully never-again-occurring next time.
  • What goes up must come down — HCG rises pretty fast. Once the methotrexate kicked in, it lowered pretty fast too though towards the end, there was some sort of half life effect going on.
  • The progesterone dropping — that should have been a sign that something wasn’t right. Later on, I found out that increasing HCG not accompanied by a corresponding increase in progesterone is one of the warning signs for an ectopic.
  • It’s strange to me just how long I would have tested as pregnant after I wasn’t. It took an entire month after the first shot to be fully un-pregnant. Is that a thing?
  • Apparently the starting HCG of ~10 is on the low side and often does not correlate to success (according to my RE). Something to keep in mind for the future.
  • It all looks so innocuous in all these pastel-y spring-y colors.

I’ve been getting more and more into these personal data visualizations (I hesitate to call them analyses on a sample size of .. me). But also, during the last few months, I realized that I didn’t have enough of a sense of what was going on for my own comfort. I didn’t have a sense of a baseline or what to expect. Anything I read/was told went all over the place. For example, bleeding could last anywhere from a week to 6 weeks. That’s an awfully wide range.

At any rate, this (and the lack of any tracking app/software for this type of thing) was the impetus for me to start building my own tracking — I turned to my trusty raw text files and R for the plotting (clearly, I’m very high tech). Obviously it’s not perfect (yes, I know that multiple axes are a bad idea) but I liked how it gave me a high level visualization of what was going on with my body. And it made a ridiculously shitty experience into, not a positive experience, but at least an interesting one.

#MicroblogMonday: Telling family

Oddly I found it harder to ‘come out’ to family than to friends. Perhaps because it involves acknowledging the existence of sex which is something we go out of our way to avoid with our parents.

My mom knew from back when I was diagnosed with PCOS – I was young enough that she was the one who took me to a gynec. Presumably she told my dad? I’ve always known that he knows about things but I rarely tell him myself. But we didn’t tell my parents we were trying up until we were actually starting treatments. Mostly it felt too awkward and anyways, what could they do or say? Still, since then they’ve been nothing but supportive, especially since my mom was here during my last cycle and the ectopic so she could see the drain of all of it.

In-laws — well, we finally told them when we were trying to make them understand why we weren’t planning on trip to visit then and instead wanted them to come visit us. They don’t live in the same country so a trip to visit them is usually at least 3 weeks. I couldn’t fathom losing (potentially multiple) cycles because we were traveling. To give them credit, the moment we told them, they immediately asked, “ok, when is best for us to visit?” Actually, I think they were just relieved that I wasn’t high-powered-career-woman-who-never-wants-kids. With the ectopic.. well, I never talked to them about it. My husband told them and then no one mentioned it again (which is what I wanted).

So both sets of parents know but none really knows any details. And all of them largely take our lead — if we want to talk, they’re willing to listen but they don’t bring it up.

As for extended family, we have no plans to tell anyone. Either we’d get a lot of (already known and unnecessary) advice or “well, my daughter had a hard time. she was trying for 3 whole months!” stories or “it’s not in God’s plan” stories. None of which are remotely comforting. Last time we visited, I told my husband that if any of extended family asks about kids, I’d talk to them very explicitly about ovulation or timing sex. Thankfully I never had to carry through with that threat (because I probably wouldn’t have had the guts to)!