Please pay for me to make a tiny human

Yesterday was my meeting with HR about my request for our insurance to cover IVF. I came prepared with a sheet of facts about how IVF coverage doesn’t necessarily increase costs as well as a study about how coverage effects employee satisfaction. I was hoping he’d drive the conversation as I wasn’t really sure what he was expecting from me. Luckily, he did.

He started out by telling me what we do cover (in regards to infertility) as well as how the process works for things that aren’t covered. Basically every year HR makes a list of the most request items as well the cost impact. They then present this list to the board and based on what they had for breakfast that morning what seems most compelling, they make a decision.  So, IVF/IUI coverage will be added to this list this year.

He mentioned that he had his benefits coordinator look into the amount of requests and the amount currently spent on infertility, and I got the feeling she didn’t think it was a remote possibility. He said something about a hidden cost of covering infertility to be an increase in premature births, which he said are some of the highest claims they see. Typically I’m terrible on the spot, but this time I pulled through! I remembered reading a stat about how in Massachusetts (where IVF coverage is mandated) the multiple birth rate is actually lower than everywhere else. So I mentioned this and said that for me, since I am paying out of pocket (and therefore have a limited amount of cycles) I am MUCH more likely to throw caution to the wind and put in 3 embryos versus 1 or 2. You could tell that got his wheels spinning, he even wrote it down!

He never gave me a company credit card with an IVF seal of approval, so husband was disappointed. But all in all, I thought it went well. Honestly I don’t have high hopes that my company will cover IVF in the near future, but at least I tried. He did say he appreciated me letting them know versus just complaining about it, and that he wished more people would do the same. I did tell him I appreciated that they at least cover the drugs, because it is a big help and I’d hate to lose that coverage.

Now to work on my letter to the Pope (my Catholic church post rant is coming, I promise!). 

There’s no such thing as a dumb question, right?

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Our IVF consultation appointment is this Thursday. I want to have a thorough, prepared list of questions to ask him. I want to leave that appointment with a clear understanding of what to expect. I’m the kind of person that will be up all night agonizing the things I didn’t ask, so I’m trying to be proactive. Here’s my current list, what am I forgetting?

  1. Based on my history, what are my odds of a live birth (and with how many cycles)?
  2. Why are their FET success rates so much lower now than in 2008 (50% vs 25%)?
  3. Do you know if your success rates went up in 2013?
  4. Why did IUI fail for us? Why might IVF work?
  5. Why was I able to get pregnant 3 times on Clomid/Femara, but not with injectables?
  6. Any sense in doing more IUIs before moving to IVF?
  7. Do you do a 3 or 5 day transfer, and why?
  8. What supplements should I be taking?
  9. Do you use vitrification? (a super fast freezing process, thought to be better than conventional freezing methods)
  10. Why would a cycle be canceled?
  11. How soon after the first fresh IVF cycle can we do a FET?
  12. How many eggs do you hope to retrieve?
  13. Will I have a specific nurse assigned to me? 
  14. Do you do bed rest after the transfer?
  15. When can I get started?

It’s just IVF…..

Since my very public 3rd miscarriage back in November, we’ve received a whole spectrum of support from friends and family. We’ve been very open about our treatment plan and how things are progressing. Frankly, we’re starting to get a little miffed pissed at peoples indifference about taking the next step to IVF. Since our problem was always staying pregnant rather than getting pregnant, it’s been difficult for us to wrap our minds around IVF. IVF is the big enchilada, the holy grail of infertility treatments and as such has more weight with people than say IUIs & injectables. Yet, people act like we’re talking about getting flu shots!

For example, on Friday we were at my in-laws and my husband casually mentioned that he’d talked to a coworker about his journey with IVF (3 failed cycles) and how he hoped we would have better luck. I mentioned the availability of a possible FET or two after a fresh IVF cycle and how that could potentially reduce our costs and the physical impact on me. My MIL & SIL were in the room and both just stared blankly at the tv as if we were discussing the migration patterns of ants. No questions? No comments? Hello, is this thing on? This is the 5th or 6th time my husband has brought up IVF with his family. My mother in law has said things like “we just really hope something works for you” or “I’m sorry you guys have to go through this.” We know they are sympathetic and we know that they do hope the best for us, but we’d appreciate some interest in this major life event! 

My immediate family has been great though, so we do have them. My mother especially is VERY interested in the whole process and has even done her own research (including visiting my RE’s website). As we go through it all, I’d love for our families to know and ask and care when the milestones occur. Is that asking too much? I’ve seen other bloggers have their entire families go with them for the embryo transfers, so I just can’t imagine wanting a text asking where things are at is too much to ask. Then there’s my grandma, who I’m close with otherwise, is quick to change the subject whenever I bring it up. It is so frustrating! We’re getting to the point where we just want to quit talking about it and just let them all wonder what is going on (maybe then they’ll ask!). 

In general, I think it just upsets us that people aren’t treating it like a big deal, and it is just a HUGE deal to us. Maybe we’re in the wrong here, maybe it isn’t that big of a deal. But even if it isn’t, shouldn’t people humor us and act like it is? I’ve shown more concern for a friend who got a bad dye job than what I’ve received from the majority of my friends. Is this common? How much support have you all received through your IVF journeys? Am I expecting too much? 

Resolve to know more about your treatment

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National Infertility Awareness Week is coming to an end. I wanted to do one more post in honor of it and to be a part of the Bloggers Unite Challenge (we are celebrating 25 years after all!).

After 29 months of regular doctors’ appointments, I’ve realized how important it is to be your own advocate with your treatment plan. No one know yours medical history as well as you do. No one cares about the outcome of your treatment as much as you do. It is up to you to keep your doctors and nurses on their toes and ensure you are getting the best treatment possible. It’s not always easy to second guess your doctor, but they are people too and no one is perfect. Since I’ve taken a more active role in my treatment, I feel more empowered and more confident of the path I’m on. Here are some tips that have helped me take charge of my treatment:

Ask questions. This one is obvious, but easier said then done. It is very important to understand why a doctor may choose one way over another. Don’t be shy, a good doctor will be thrilled to explain his methods. Why start stims on day 3 instead of day 5? Why implant 2 embryos instead of 1? If you think of something after your appointment, call your clinic’s nurses line!

Do your research. Before choosing an IVF clinic (if you’re lucky enough to have multiple in your area) check out their stats on SART (Society for Assistant Reproductive Technology). All IVF clinics are required to report their stats to them, so it’s a great place to compare success rates. You can also compare your clinic to the national success rates. The stats I find to be the most indicative of a good clinic are percentage of cycles resulting in live births for fresh and thawed cycles (don’t ignore the # of embryos implanted or cycles cancelled either).

Trust your gut. If something doesn’t feel right, question it. I’ve followed too many instructions that I wasn’t comfortable with to later regret it. If you feel like you need to do the IUI 24 hours after trigger instead of 36 hours, let them know. Obviously you need to take the doctor’s opinion to heart, but perhaps they weren’t thinking of something in your history. I’ve had nurses look at my history too quickly and give me the wrong dosing schedule. It’s up to you to know your history and be your own advocate!

Get a second opinion. Some doctors are better than others, some are more familiar with your specific condition, and some just may have more experience than others. It’s important for you to be comfortable with your doctor. If you just aren’t jiving with your doctor, find another one. Both times I’ve requested a change in doctors it’s even been within the same office. No one should question your desire to change, don’t be nervous to make the call, it’s more typical than you think.

Utilize the IF online community. If you wonder if anyone else has had luck with a specific treatment plan, there’s no better place to go than the IF online community. Post it to a board, blog about it, or ask in a facebook group. Your RE may have seen hundreds or maybe even thousands of patients, but that can’t compare to the millions of us online. Should you take your medical advice from ONE person online whose not a doctor? Of course not. Compare stories, ask around, and gather information. Bring it to your doctor and discuss it together, perhaps they’ll learn something too.

Just remember this is your journey, don’t be passive in it!

For more information please check out:

Throwback Thursday – Dr. Crazy Glasses

Here is one of the many stories that at the time I thought to myself, I should be blogging about this stuff.

After my second miscarriage, I was having some pain along with a few other strange symptoms (honestly I can’t remember what they were, but I remember being alarmed). I called my OB office to see if I needed to come in. They wanted me to come in that day, but my OB was on vacation. Instead they scheduled me with a different OB at their other location.

I waited FOREVER in the waiting room but finally got called back. Into my room walks a short little lady with a bright rainbow colored shirt, purple shoes, and crazy orange glasses. She must have been at least 70, but was trying to hide it by dying her hair a very unnatural looking black. My normal OB is the poster child for female doctors, so this new lady just cracked me up (even before she opened her mouth).

She started off by saying how sorry she was about the miscarriage and how it was extra sucky that I had to come back in, but that she’d get me all fixed up and send me on my way. We made a bit more small talk and then she began the exam. As I’m in the typical on my back legs spread OB position, she says to me as she is inserting the speculum, “So what do you do when you’re not having miscarriages?”  For whatever reason, that hit me just right and was about the funniest thing I’d ever heard (and still makes me chuckle!). I think if it had come from any other person, it might have upset me. But this lady was such a character; it was the perfect thing for her to say. I can’t remember how I answered, but I think it was something to the effect that it felt like it had become my full time job lately.

After the exam, she spent about 15 minutes with me making recommendations on how to proceed with my next pregnancy. She recommended books, gaining weight (she gave me doctor’s orders to eat ice cream nightly, which I’ve taken very seriously), medications, and a few other random tips. While she’s talking she’s writing it all down for me, in completely illegible scribbles and pictures (I wish I could have found them, would have made a great picture for this post!).  I couldn’t believe this doctor I’d never met before was taking so much time to give me advice (albeit a bit scattered). When she left, she gave me a hug and told me she’d pray for me.

When I got into the car, I sat there for a few minutes and played back in my head what just happened before I called my husband. I felt like I had just been punked or was on candid camera. Such a bizarre doctor experience! Luckily I had the scribbled paper to prove it or I’m pretty sure my husband wouldn’t have believed me. I haven’t seen her since, but hope to again if I ever get pregnant.

Anyone else have a crazy doctor experience?

(For what it’s worth, I did have an infection and had to take a week of antibiotics)

I got a response!

So if you’ll recall, late last week I posted about sending letters to my HR department requesting infertility coverage for our insurance. I am happy to report, I got a response! I really didn’t think I would hear back, so I am excited! Here’s what he said:

I wanted to acknowledge that we’ve received your letters in regards to fertility benefits. I’m doing a little research on what we currently cover regarding fertility benefits and would like to get back with you in person to discuss. Would you be open to that? 
 
I believe we do spend quite a lot on Employees and spouses who use fertility drugs. You are correct that we don’t cover in-vitro fertilization procedures which can be very costly. I would like to take the research you sent us and further evaluate these benefits to better understand the coverage and what we do and do not pay. Each year, we get many requests to cover or increase coverage for our benefits. We attempt to look at each one to determine what we cover and see if we should make a change. 
 
If you are open to meeting, I can set something up for us in a few weeks. Let me know if that would work and thanks for sharing your thoughts and information with us. 
 
I of course agreed to the meeting. I’m not exactly sure what we’ll discuss, but perhaps he’ll outline that in the appointment (which he hasn’t set up yet). Regardless, it’s a step in the right direction! Feels good to do my small little part during National Infertility Awareness Week!
 
Happy advocating! 

Resolve to know more

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RESOLVE is urging the infertility community to spread the message “Resolve to know more.” I’m writing about how others can resolve to know more about comforting someone battling infertility. Since infertility is still a fairly uncomfortable topic for most, treading the waters can be intimidating. Here are a few tips –

  • Stay away from using cliches. We’ve heard them all before and they weren’t helpful the first time.  “God has a plan for you” or “It will happen when it’s meant to happen” or my personal favorite, “Just relax” make us crazy! The next person who tells me to relax is coming off my Christmas card list. If you want a generic thing to say, try “I’m so sorry, that must be horribly difficult. If you want to talk about it, please let me know”. 
  • Be extra sensitive on holidays. Holidays can be especially painful for those of us with infertility. Imagining how events would be different with kids, seeing a facebook feed full of babies and children enjoying the holiday, and being around our family members with kids are just a few of the triggers than can make the holidays extra difficult. I have a friend who sends me a text every mothers day just to “let me know she’s thinking of me”. An easy thing for her to do, but it really has meant a lot to me. 
  • Be interested in the process. The friends and family we’ve found the most comfort in are the ones most interested in our treatment. Treating infertility isn’t just taking a few pills and having a bunch of sex. It is a time consuming, complicated, sometimes painful, always exhausting, and completely engulfing process. I appreciate when my friends and family ask questions and seem interested. 
  • Don’t complain about your pregnancy. We know you are bloated, swollen and nauseous but we’d love to feel ten times worse and be in your shoes. Whenever I hear a woman complaining about her pregnancy I want to just shake her and tell her how lucky she is and to appreciate every wave of nausea, but I don’t because that’s what a crazy person would do (and I’m not quite there). 
  • Offer your time. If you are family or a close friend, offer a ride to an appointment or to sit with them in the waiting room. A lot of appointments are involved with infertility treatments and it can get overwhelming. Having someone else come with us make it a bit more fun and spices up the routine. Personally, I prefer to go to my appointments alone but I do appreciate the offer. 

For more info on infertility please visit: 

Negatory!

No little pink line for me this morning. Rats! I wasn’t very optimistic this month, so not too crushed. I’m more bummed that we have to go through IVF. Truly I just never thought we’d get to this point since we hadn’t had that much trouble in the past getting pregnant, just struggled staying pregnant. I find it so strange that my OBGYN was able to get me pregnant 3 times with just clomid/femara yet my RE can’t seem to with the best meds out there (follistm/gonal-f). I know they say your body changes after each pregnancy (I assume that means even if you don’t carry to term) and apparently that’s been the case for me.

So today I’ll call my RE office and get a consultation on the calendar with my doctor. I have quite a few questions for him before I’ll feel comfortable moving forward. In particular, I’m interested to understand why his success rate has dropped pretty significantly in a few areas over the last few years. Specifically the frozen embryo transfer rate – in 2008 it was 46% (resulting in live pregnancies) and then in 2012 it dropped to 25%. Seems like a pretty drastic shift. I know there are a lot of factors, but that just seems like something must have changed between then and now. I’ve done a lot of research on my clinic and they seem to be close to the national average, but not quite there. Not that it really matters, there isn’t another clinic within a 100 miles of here, so they basically have me by the eggs (ha, get it?).

As much as I’d like to give the Chinese herbs a try first, I think I want to give one round of IVF a try first. I am just concerned about the lack of monitoring with the herbs (cysts/OHSS). I also just wish there was more research out about them, I don’t want to waste 3-4 months of my time on them if they don’t have a real shot of working.  We’ll see.

Reminder, it’s infertility awareness week!

 

 

Who knew I’d become an activist

Who knew I'd become an activist

Infertility awareness week starts next week! I thought I would get us all in the spirit a little early with what I’m doing to spread awareness (albeit for somewhat selfish reasons).

I’ve become increasingly more furious about the complete lack of infertility coverage with my work-sponsored plan. I’ll never understand why infertility isn’t treated just like any other disease. Can you imagine if plans took away diabetes coverage? Oh but they cover sterilization of me or my husband at 100%, super.

Rather than continually bitch about this, I decided to try and do something about it. So, I sat down and wrote letters to the President, HR Director and HR Benefits Manager. According to resolve.org, 65% of companies that offer infertility coverage did so because of an employee request.

I suspect that my company doesn’t offer this coverage for religious reasons (private company) more so than financial. I’ll save my rant against the Catholic church’s feelings on IVF for another day, Good Friday doesn’t really seem appropriate. So unfortunately I doubt anything will be done until my state mandates the coverage (did you know that 15 states already do?).

If your interested in sending a similar letter to your employer, you can use the same template I did at http://www.resolve.org/family-building-options/insurance_coverage/no-coverage-through-work.html. I decided to also include a few personal details (how long we’ve been trying, what a struggle it is for us, how isolating it is when insurance doesn’t acknowledge it’s a real problem) to try and evoke some empathy (I mean their not monsters, right?) .

Infertility is such a quiet/private struggle, it doesn’t get the attention it deserves. So, this is my small attempt to be heard. If I was bolder, I’d wear a infertility awareness shirt/pin/flag/billboard all next week . But since I’m not, I’ll start working on letters to my state representatives and the Pope!

Top 5 Reasons I hate the TWW

5) The waiting. I much prefer the feeling of actively doing something for the first two weeks (doctors appointments, injections, sex, acupuncture). 

4) The vaginal progesterone. I very much dislike the crazy dreams and the morning drips. 

3) The spending all of my free mental energy debating what to do definitely next time. Should I ask to start meds on CD4 instead of CD3? Should I do acupuncture the day after the IUI instead of the day of? Should we abstain 3 days before collection instead of 2? Should I wiggle my nose and tap my feet at the same time or wiggle my nose and THEN tap my feet after the IUI? Ok I’ve never had that EXACT thought, but just about.

2) The morning before test day. I am unable to get any quality sleep and am plagued by dreams where I take test after test. Around 3 or 4 am I inevitably give up trying to get back asleep and just take the stupid test. I’m then unable to go back to sleep and the black cloud if anger attaches itself to me for the remainder of the day.

1) The constantly evaluation of my pee frequency, boobs, or any flash of nausea or lack there of. Whenever I think I am, I’m not. Whenever I think I’m not, I’m still not. Why bother?

4 more days to go. Why do you hate the TWW?