Monday, May 2, 2022

The Financial Side of [In]Fertility

One of my goals for National Infertility Awareness Week was to make a transparent post about the financial commitment that comes along with the other highs and lows of infertility. I'm a few days after when I said I'd post this, but fortunately I don't answer to advertisers or sponsors on this little blog. One reason for my tardiness is that I've been busy busy with lots of other stuff, but another piece is that talking about money can be extremely awkward and uncomfortable. I haven't quite reached the point of "getting comfortable being uncomfortable," but maybe I will be there someday. I have said before that as difficult as IVF and other fertility treatments have been, I am at least grateful that we have been able to swing them financially. Not everyone has the chance to try once or twice, much least five times? Plus three IUIs?...but we have. So, I try to appreciate that. However, others also remind me that it's okay to be grateful for the opportunity and detest needing it all at once.

On the day of the great spicy chicken sandwich incident in December 2019, over a year before we met our RE, one of my sisters-in-law mentioned that there are lots of options to help people get pregnant. My immediate response was, "But they're so expensive," and my sister-in-law Maryanne said, "But you have money." 

But you have money.

When framed that way, the solution seems so simple. And really, problems that you can fix with money are easier than many other problems. It turns out that infertility isn't a problem that is necessarily fixed with money, but money can certainly solve the problem of access to fertility treatments. Richard and I are fortunate that we can both work, and he earns more money than a lot of people do, but we also have considerable debt for his training. While we were fortunate that we could financially swing fertility treatments, it is incredibly frustrating that we're paying so much to achieve what some people achieve for free (and sometimes on accident!), and we haven't crossed the finish line. But, we remain hopeful. 

Anyway, I've thought for a while about how to broach this topic and have not arrived at what I felt was a perfect solution. So, forgive me for any missteps in disclosing this information. My intention is 100% to spread awareness to what [in]fertility treatments can cost and not to flaunt my financial circumstances. If it helps, my car is 17 years old. 

To get started, here are a few things to know:

  1. Our insurance does not cover anything related to [in]fertility.
  2. Our insurance DOES give us a totally fair price for the therapist that I see largely due to needing assistance coping with infertility and the emotional roller coaster that comes along with that journey. I am grateful for this.
  3. I do have records of all fertility-related expenses we've paid since 2019, but I'm focusing on 2021 because that's where the bulk of the money has gone, and I already have that information in a spreadsheet thanks to filing our taxes recently.
I mentioned last week that we itemized our taxes for 2021, which was a first for us. I used H&R Block, and the software gave me a message along the lines of, "To deduct your medical expenses, they must be more than 7.5% of your adjusted gross income (AGI) and paid by you out of pocket - not reimbursed by insurance." Then, it says, "Since your entries show your AGI is $X, your expenses must be more than $Y. Are your out of pocket expenses more than or close to $Y?" I actually laughed, took a photo of my computer screen, and texted it to Richard. If only our medical expenses had been $Y! Yes, $Y is more than I expected to spend attempting to get pregnant and birth a live baby, but it's way less than what we spent in 2021.

The final amount we deducted was $81,002.82. Not all of that was [in]fertility-related, but most of it was. What's the breakdown? Good news, I've got that too.

IVF Cycle 1
The first IVF cycle (March 2021) was the most expensive because we purchased 14 days worth of medications for stims. I tend to be on the shorter side of stims, which has caused some issues but has saved us a little money over time. 
  • Eluryng (birth control ring not covered by my insurance through Richard's hospital): $123.60
  • Clinic Procedures (ultrasounds, bloodwork, physician costs, retrieval): $6,648.00
  • Laboratory Procedures (preparing the sperm sample, fertilizing the eggs, monitoring the embryos, doing a biopsy of the embryos that make it to testing, freezing the embryos): $5,844.80
  • Anesthesia (for the egg retrieval): $525.00
  • Specialty medications (not covered by insurance): $6,674.29
  • Pain management meds (covered by insurance): $5.11
  • Genetic testing of 1 embryo: $475.00
Total for IVF Cycle 1: $20,295.80

Long-time readers might recall that we only stimmed for 7 days this cycle, and our RE gave us the option to convert to IUI rather than going for the retrieval. By skipping the retrieval, we could save the costs of anesthesia, some of the clinic procedures, the laboratory procedures, and the genetic testing. However, we'd be out the clinic costs plus about half of the meds, which would be roughly $10,000. We went forward with the retrieval and ended up with one embryo that tested highly aneuploid.

IVF Cycle 2

We jumped straight into IVF Cycle 2. We had some medications leftover, which meant this cycle was about 20% cheaper than the first one.
  • Birth control pills (not covered by my insurance through Richard's hospital): $25.15
  • Clinic Procedures (ultrasounds, bloodwork, physician costs, retrieval): $6,648.00
  • Laboratory Procedures (preparing the sperm sample, fertilizing the eggs, monitoring the embryos, doing a biopsy of the embryos that make it to testing, freezing the embryos): $5,844.80
  • Anesthesia (for the egg retrieval): $525.00
  • Specialty medications (not covered by insurance): $1,981.49
  • Medicine to make my ovaries chill out because my estrogen was high at the retrieval (covered by insurance): $15.00
  • Genetic testing of 3 embryos: $1,025.00
Total for IVF Cycle 2: $16,064.44

Two embryos came back euploid, and one was highly aneuploid. With that, we headed into a third IVF cycle. 

IVF Cycle 3

Knowing we would like 2-3 children and feeling excited about the better results from the second cycle, we felt optimistic about going for another round. We had to buy more medications than the second cycle but still not as many as the first cycle.
  • Clinic Procedures (ultrasounds, bloodwork, physician costs, retrieval): $6,648.00
  • Laboratory Procedures (preparing the sperm sample, fertilizing the eggs, monitoring the embryos, doing a biopsy of the embryos that make it to testing, freezing the embryos): $5,844.80
  • Anesthesia (for the egg retrieval): $525.00
  • Specialty medications (not covered by insurance): $4,835.38
  • Pain management meds (covered by insurance): $5.13
  • Genetic testing of 1 embryo: $475.00
Total for IVF Cycle 3: $18,328.18

Out of six mature and fertilized eggs, one made it to be genetically tested, and it came back highly aneuploid.

IUI Interlude
The news that we didn't have any euploid embryos from our third cycle really crushed me. Noting that we had two euploid embryos in the freezer and wanted 2-3 children, our RE suggested trying IUI to see if we could achieve a pregnancy that way. We agreed and did three IUIs (the maximum he would do) over the summer. None of them worked, but it sure would have been cool if they did. All three of our IUIs were the same cost:
  • Clinic procedures (ultrasounds, bloodwork, physician costs): $1,144.00
  • Laboratory procedures (preparing the sample for insemination): $208.00
  • Clomid (covered by insurance): $34.92
Total per IUI: $1,386.92
  • Trigger shot (only used for IUI #3): $133.90
Total spent on 3 IUIs:  $4,294.66

After the IUIs were a bust, it was time to put one of our frozen embryos to work. In September, we started a frozen embryo transfer (FET) cycle. The expenses are a little different for these.
  • Clinic Procedures (ultrasounds, bloodwork, physician costs): $2,288.00
  • Laboratory Procedures (thawing and culturing the embryo): $1,144.00
  • Specialty medications (not covered by insurance): $709.70
  • Non-specialty medications (estradiol tablets and patches, methylprednisone, etc.): $64.65
Total for FET 1: $4,206.35

IVF Cycle 4

After the FET ended with a chemical pregnancy, we were back to retrievals. The discrepancy in amounts here is testament to how at some point we were just like, "Here's my credit card for whatever you tell me I'm supposed to pay because I don't really have another option but to say yes to that amount if I want to hopefully have biological children or, you know, at least the chance at biological children." According to my records, I only ("only") paid $5,608 in clinic procedures this cycle.  I might've paid an additional $840 some other time, but I don't have the receipt. My clinic says I don't owe a balance, and I'm good with that.

This cycle ended a little differently because we did a fresh transfer and didn't have any embryos to freeze or test. We actually have a credit of $701.19 with our RE's office that we can use for a future cycle, BUT here's what we paid. The birth control ring cost $0 through my insurance with Penn State.
  • Clinic Procedures (ultrasounds, bloodwork, physician costs, retrieval): $5,608.00
  • Laboratory Procedures (preparing the sperm sample, fertilizing the eggs, monitoring the embryos, doing a biopsy of the embryos that make it to testing, freezing the embryos): $5,844.80
  • Anesthesia (for the egg retrieval): $525.00
  • Specialty medications (not covered by insurance): $3,723.68
  • More PIO after our embryo transfer appeared to work, and my body was producing HCG (the pregnancy hormone): $159.80
Total for IVF Cycle 4: $15,861.28 ($15,160.09 if you take out the $701.19 credit.)

Other Stuff
I've talked about embryos in the freezer. Well, they don't get to chill (pun intended) in the freezer for free. After 6 months, we started paying rent on those babies (pun not this even a pun when you're talking about embryos?) Starting in September, we paid $41.67 per month for the safe storage of our embryos. 
  • Richard's semen analysis in February: $156.00
  • Embryo storage ($41.67 x 4): $166.68
  • Therapy ($25 per session, but I eventually hit the deductible, which was cool): $725.00
Total other stuff: $1,047.68

In total, we paid $80,098.39 out of pocket for medical expenses related to infertility last year. That's about what Richard and I earned in combined income when he was in residency and I was working in residence life at Centenary. 

Again, talking about money is awkward. Richard and I have chosen to spend money in this way at this point in our lives because it aligns with our current priorities, and we are so, so fortunate that we are able to make that choice. Some employers and insurance plans offer coverage toward fertility treatments, so not everyone who walks this road makes the same financial commitments we have. Prices also vary from clinic to clinic, but I have not really explored other options because we have been satisfied with our care.

I didn't think I had a great photo for this post, but then I found this screenshot of an e-mail from American Express that I got last May after we spent $50,000 on my card. Previously, I hadn't spent more than $25,000 on it in a year, so this was quite the achievement. (Actually, it made me a little sick.)

Something that made today great: We celebrated the BRYC seniors tonight, which was so much fun!
Time I woke up: 9:15 am

Wednesday, April 27, 2022

3.5 Months Later (NIAW 2022 Post 1)

 If I were in an episode of SpongeBob SquarePants or perhaps an old movie, the screen would flash "3.5 months later..." for a few seconds, and then we'd be right here. I posted on Facebook that it's National Infertility Awareness Week again, and I'm still infertile, but it is actually a good time to reestablish a non-academic writing routine.

I've thought about writing this post or any blog post for a while. After the miscarriage (which is what happened after my last post), I put as much of myself as I possibly could into working, writing my dissertation, and doing anything but remember that we're still living the nightmare that is infertility. I have been to three conferences in three states, caught up with old friends, made new friends, and picked up running again. I guess it's easy to fill up 3.5 months.

The day after our ultrasound appointment at the fertility clinic, I headed east to Georgia to stay with my mom while she had knee surgery. The day after that, she had her knee surgery, and I started the miscarriage. I've thought about how to write about it, but I don't really know how to put it. Compared to the intense stories I've read about other people, this one was about as "standard" and "mild" as possible...whatever consolation that is. Regardless, lying alone in my high school bedroom cramped up and bleeding on a cold January day was traumatic and unwelcome after everything we'd been through in 2021 and the three years before that. Actually, I can't think of any time I'd welcome that.

My marathoner spirit (also known as endurance) carries over to other areas of my life, especially the part where I tend to keep moving forward even if everything sucks and my whole body hurts. Richard, who has been the most amazing husband and support system through everything, finally spoke up and said he thought we needed a break from fertility treatments for our mental health if nothing else. Largely out of my somewhat irrational (but also largely rational) fear that I'm going to run out of eggs, I resisted at first but ended up agreeing. 

So, that's where we are right now. 

I told myself I wouldn't use any ovulation predictor kits or pursue fertility treatments until I scheduled my dissertation defense. So far, I've been true to my word, though my therapist reminds me that I'm allowed to break the deals I make with myself. I'm getting closer to scheduling my dissertation defense and am seriously considering doing the endometrial receptiva analysis (ERA -- the one where we do all of the stuff involved with a frozen embryo transfer except for transfer a frozen embryo) next month and look to another retrieval in the summer. We'll see.

I worried about March rolling around because that marked four years since we started trying to conceive. I joked last year that my infertility could have a bachelor's degree, but four years into this, I'm thinking some institution needs to go ahead and confer that. It's been a long road. Although I knew that IVF was exhausting, I hadn't realized how much I was worn out by the roller coaster of emotions; every time something seemed promising, we got worse news. Also, we had so many appointments! I itemized our taxes this year (get excited for a full financial disclosure on Friday), and my conservative estimate for mileage was that we made 45 trips (19 miles round trip) to Woman's Hospital. Similar to the miscarriage, I know other people have it way worse and don't have their fertility clinic in their hometown, but also...that's a lot of trips and time to have the outcome we had. 

The break has been good for both of us, and Richard has said he's ready to start again whenever I am. So, that's a good thing. One thing I have seen and heard about is how infertility can wreck or solidify a marriage, and I've been fortunate that we ended up on the "solidify" side of that situation. I blame our [in]fertility issues on myself because I have the low egg reserve, but Richard always frames them as "our" issues and never blames me. Sometimes I think about how he could've had a big family with someone else but got me instead, but I try not to think about that too much. When I was crying alone in my high school bedroom, I remembered times when I cried in the very same bed because of some dumb boy who didn't treat me well or didn't like me. Back in those days, I hoped so hard that I would find and marry someone who loved me unconditionally and treated me well, and I got that. Sometimes I take it for granted.

So, another thing I've worked on is nurturing my marriage and spending time with Richard. I guess it doesn't sound like he's been a priority between work and traveling, but we've had some good quality time together. Sometimes it's a quick dinner between when he wakes his up and when he leaves to work the night shift, but we've also made some little trips. We also tried our hand at tandem biking; it went great when he was in the front (in control) and was a disaster when I was in front. He didn't like it when I said I wasn't used to having an extra 250 pounds on the back of my bike. Here are some selfies of us at Lake Livingston a few weeks ago. You can't see in the photo, but I'm wearing a sweet tank top with a fish on it.
Three selfies of a white man and white woman: 1- both smiling, 2- man making a funny face, woman smiling, 3- both making a silly face

Something that made today great: My check engine light was on, but it was due to a loose gas cap and not an actual engine problem!
Time I woke up: 6:50 am

Monday, January 10, 2022

Fresh Embryo Transfer 1 - 26dp5dt

There's a lot of collaboration that occurs within academia, and this allows people to publish in some highly specific stuff related to their research. Sometimes, for example, editors of an upcoming book will put out a call for proposals for chapters related to a specific topic. This also occurs in scholarly journals; if a topic draws enough interest or relevance in the field, journals will seek submissions for articles to include in a special issue. In fact, some colleagues and I recently had a proposal accepted for a special issue of a journal, which was exciting!

What is less exciting is that today I learned I could author a chapter or article about several ways to have rising HCG without the possibility of a baby in 9 months. The first was in October/November when I had the chemical pregnancy: a little HCG, but not enough. The second was today.

This morning, we were scheduled for an 8:30 ultrasound to check on the status of the pregnancy that had followed from our fresh embryo transfer. By now, I'm a pro at taking off my pants and getting into the stirrups. When my doctor came in, he asked if I had any cramping, nausea, or bleeding, and I responded "no" to all three but said I'd been thirsty and been grazing a lot. He seemed happy to hear that and got to work with the ultrasound wand. 

I'm familiar enough with the ultrasound routine--and my doctor is familiar enough with a uterus--that I know when things are going well, the ultrasound operator finds what they're looking for pretty quickly. I moved my eyes back and forth between the ultrasound screen and my doctor's eyes, and he said a few times, "I don't like what I'm seeing." After a discussion board conversation with an internet stranger yesterday (0/10 do not recommend), I'd started to worry that my slow-rising HCG meant the pregnancy was ectopic--that is, implanted somewhere other than the uterus, often the fallopian tubes. 

"It's in my uterus, though...right?" I asked.
"Yeah, it's in the uterus," he said.
"Well, that settles one of my worries."
"Worried about ectopic?"
"I'm thinking blighted ovum." 

Blighted ovum?

I'd read a little about what a blighted ovum is because that is another thing that low/slow rising HCG could indicate. It's also known as an anembryonic pregnancy, and if you break down the term with "an" meaning "lacking" or "without," it's exactly what it sounds like: a pregnancy without an embryo. I didn't think much about the possibility of it happening to me until this morning when my doctor said he suspected it was happening to me. Then, my inner dialogue (skip a few lines if you're not one for colorful language) kicked in.

How the FUCK is there a pregnancy without an embryo when we all saw you put the embryo in?

I'm still unclear on the answer to that question, but what I have learned is that it's pretty common. According to the American Pregnancy Association, about 50% of first trimester miscarriages are due to a blighted ovum. Sometimes a blighted ovum can be a misdiagnosis if someone believes they are later in the pregnancy than they actually are (they ovulated/conceived later than they realized), but that does not happen in the case of IVF.

My RE took a few pictures of the little gestational sack and told Richard and me that he didn't think things were looking good; it appeared to be an abnormal pregnancy. I could tell he was upset by this development (or lack thereof) too.  I guess this doesn't get easier even if it's your job and you do it every day. 

He said we could do bloodwork to check HCG, and he gave us an overview of the options. We could see what my body did on its own, I could take medication to end the pregnancy, or I could have a surgical procedure called a dilation and curettage (D&C) to remove the tissue from my uterus. We opted to take the bloodwork and see what it said before making a decision. A bonus (if you can call it that) of the D&C is that the tissue could be sent off for testing to get an idea of what went wrong. The downside (which is a big one) is that it sounds really traumatic. In reality, I'd probably get used to it in the same way that I got used to the stomach injections before retrievals and the PIO shots before and after transfers, but I am hoping to avoid that path. 

When my RE called this afternoon (remember that he calls when the news is bad), he told me that my HCG had risen to 2429, which is still rising but lower than he would expect at this point. (Yeah yeah, heard that one before.) He also said he did not expect this to be a viable pregnancy but gave me four options:

  1. Wait a week and come back for another ultrasound.
  2. Discontinue my medications (PIO and estradiol) and see what happens.
  3. Take the pills to end the pregnancy.
  4. Schedule a D&C.
Richard was asleep, so I told my RE that I would text him after I had a chance to talk to Richard. Richard felt that it would be best to skip our shot tonight, so I took that to mean we were going with option 2. I had sort of been leaning toward option 1 but also knew that it could be delaying the inevitable. A downside of option 1 for someone who's having unpleasant pregnancy symptoms (vomiting, nausea, etc.) is that HCG can continue to rise and those symptoms will persist in the presence of a blighted ovum. In my case, I'd only be dealing with thirst and eating more frequently. Nothing major. It seemed like option 1 would give us the best chance at a miracle. Option 2 still leaves the door open for a miracle to happen, but it allows the miscarriage to follow if that is what needs to occur.

I guess maybe I should've held onto my pregnancy impostor status until we saw an embryo in the gestational sack. Then again, a blighted ovum is still a pregnancy loss. The fact that it is a pregnancy loss implies that there had to be a pregnancy to lose, so I guess I wasn't really a pregnancy impostor either. 

I cried almost all day. I've been nursing a [non-COVID] cold for almost a week, and I'm still having a hard time breathing quietly, especially when I am lying down. I tried to work, and I tried to sleep, but all I could do was cry. When I did attempt to sleep, I woke Richard up with my sniffling and heavy breathing. Regardless of how unpleasant today was, I will say that this is not nearly as bad as the last time I miscarried or even when we had no normal embryos after our third IVF cycle. I don't feel as if someone is holding me against a wall by the throat, and I don't want to crawl into a hole. Maybe I am getting tougher or at least getting used to dealing with this type of news.


Don't get me wrong, I'm still completely heartbroken. This time around, though, I feel more confident moving forward. In the same way that pregnancies are all different, I know that miscarriages can vary too. Provided that my body figures out what to do, I should be able to avoid the pills and the D&C. I want to start healing. Healing might involve taking a break for a bit. I desperately miss running and am going to pick that back up as I navigate this wave of grief. My best friend reminded me today that God doesn't give us more than we can handle, and it's true...but I kind of wish I couldn't handle this so God wouldn't give it to me. 

When I first opened up about our [in]fertility struggles, I said I wanted to help educate others and end the stigma that surrounds infertility. I think I've done a good job being open about my personal experience, but I want to speak to the stigma for a moment. Specifically, I want to say that Richard and I are by no means the only people in your social circles that this is happening to. I've shared before that 1 in 8 couples experiences infertility, but 1 in every 4 pregnancies ends in miscarriage. This is really unfortunate, and I hate counting myself among either of these groups, but here's what I hope that anyone reading this can recognize: in the sea of social media posts of baby announcements, ultrasounds, gender reveals, births, and children's milestones, people you know and love are suffering the same fate I am. Maybe they aren't going through IVF (or maybe they are and aren't talking about it), and maybe they haven't said they are trying for children (or maybe they weren't trying but got pregnant anyway and started to feel excited), but there are people who are suffering alone and/or in silence because they feel like they can't talk about it. Maybe they think they did something wrong or that the miscarriage was their fault. I'm really angry about my current situation, but I have an incredible support system because I refuse to be silent. However, not everyone is able to be a loudmouth like I am. We must break down the walls that we use to put people and couples into little boxes with inaccurate notions of what families, motherhood, and pregnancy look like. This is too painful for people to face alone, but that's exactly what is happening. 

Several people have asked how they can support me, and there's not much that can be said or done for me at this point. What you can do is make an effort this week to end the stigma. That can come in many forms, including taking a few minutes to read up on infertility or pregnancy loss. (And if you find a good resource, don't be afraid to send it my way!)

Something that made today great: The COVID test I took on Saturday came back negative.

Time I woke up: 7:15 am

Monday, January 3, 2022

Fresh Embryo Transfer 1 - 19dp5dt

A while ago, I told my therapist that I thought infertility would just be the beginning of worrying for the rest of my life. If we ever made it to the next step in the [in]fertility process--which sometimes it felt like we would never get there--I wondered if I would ever be able to settle in and get comfortable. As it turns out, early pregnancy comes with a different set of questions and uncertainty. I guess that's life; there are many things to celebrate and numerous ways to find joy, but there are also a lot of things to worry about. The challenge then becomes to focus on the joy, especially when the things we worry about are beyond our control. (Easier said than done.)

The great news in all of this is that as of my blood test this morning, I am not only still pregnant, but my HCG levels are rising. Since Thursday's appointment, we saw an increase from 272 to 603, which is an average increase of 48% per day and a doubling time of 83.6 hours. Most of what I am reading says that doubling time may slow to about 96 hours after HCG is over 1200, but one said that the slowing happens around six weeks of pregnancy. I guess in many situations, HCG is over 1200 by six weeks of pregnancy, but I'm allowing myself to believe that at 5.5 weeks pregnant, mine could be slowing because I'm almost to the sixth week. 

What I really need to allow myself to do is get off of Google. I am also going to limit my home pregnancy testing. It'd be super cool if I had enough self-control to test every 72 hours at a minimum, but I'm thinking 48 hours is about the best I'll be able to do. Maybe I will surprise myself, though.

The next step is to come in for an ultrasound next Monday morning at 8:30 am. We should be able to see where our embryo implanted and see a gestational sack. We might see a yolk sack. At six weeks, the baby is about the size of a pea, so hopefully we'll see that. It is also possible that there will be a heartbeat, and we will get to hear it! With our current numbers, it is difficult to say. In some normal pregnancies, a six-week ultrasound is too early for a heartbeat. Thus, I'm not really sure what to expect on Monday, but I remain hopeful that I'll still be pregnant and that our little baby will be growing.

I'm not sure if I'll post anything between now and then or not. So far, I don't have many pregnancy symptoms beyond drinking more water than usual and grazing/snacking throughout the day, but if something changes, I might be inspired to post. The internet is telling me that I'm approaching the point where morning sickness starts for many people, so I could have great tales of morning sickness to share before Monday. I simultaneously do and do not want to have morning sickness, but I'd definitely take the morning sickness if it meant our pregnancy stayed viable.

Please continue to pray for us and for our little embryo! 

Something that made today great: Watching The Wonder Years at home with Richard (because he's off work tonight!)
Time I woke up: 7:00 am