Friday, April 29, 2011

Busting an Infertility Myth:  Infertility treatments are covered by insurance

For National Infertility Awareness week, which ends tomorrow, RESOLVE is asking bloggers to "Bust a Myth" about infertility. I've chosen to talk about the myth that infertility treatments are covered by insurance. Resolve's "bust" to this myth can be found here . Below is mine:

Myth: Infertility Treatments are covered by insurance

Fact: Not in my state and not in most others in the U.S.

I live in a state where infertility insurance coverage is not mandatory. My HMO has a little coverage and I burned through it many years ago. It consisted of a LIFETIME maximum of $4000 towards infertility treatments, which ran out with my first IUI after initial doctor visits and all of the fun testing one goes through (day 3 bloodwork, HSGs, invasive ultrasounds...). If you look back on my history, that was a long time ago. Oh, and I forgot to mention the 50% co-pay for infertility treatments, so really it amounted to $2000 of lifetime coverage, not $4000. We've been paying 100% out of pocket ever since IUI #2.

Now, Tidy and I are fortunate enough to have well enough paying jobs and not too many other financial obligations other than a mortgage and some student loans. Because of this we haven't had to put ourselves into long term debt for the treatments we have done up to this point. But, by "afford", I mean that we are able to come up with enough money to pay for the treatments, but we are not able to save for our other long term goals nor able to improve the house that we bought with a family in mind over 4 years ago. The basement remodel, new windows and other upgrades and fixes are on hold... indefinitely. We do not have an endless supply of cash just sitting around to try one treatment after another and if those fail, move on to adoption, which is also no drop in the bucket.

So, over the last 3 years, because we are now paying 100% out of pocket, here are some of the tactics I've taken to help save on little bits of the cost of 5 IUIs, 4 IVFs, 1 laparoscopic surgery and endless amounts of doctor appointments, blood draws and other invasive tests along the way:
  • I've asked others who have had success with unused meds to donate them to my cause and have stock piled half used pens and vials of follistim, gonal-f, menopur, lupron and progesterone.
  • I've researched and found a clinical trial to get an IVF cycle AND MEDS free of charge. However I did have to drive 160 miles each way to the clinic, sometimes 2 days in a row, pay for parking, take 2 weeks off work and impose on my sisters in the city to participate in it. So, "free" may not be quite accurate. Additionally, the protocol wasn't optimal for my body, as many clinical trials have standardized protocols, so it was basically a disaster and an emotional nightmare.
  • I've cried and whined to my primary care doctor to get certain tests run through her so is covered under anything other than the category of infertility and I didn't have to pay the $2-3K for immune workups that other labs charge. I also had to convince an OB in my network to order an exploratory laparoscopy for "pelvic pain" with out any other real indication of need other than multiple failed IVFs and a suspicion of endometriosis. I felt very manipulative.
  • I've maxed out my health spending account at work for a few years to get some money tax free. Currently my paychecks are about $250 smaller than they would be otherwise.
  • I've taken out at least two 0%-interest credit cards and put large sums of $$ on them in hopes of paying it off before interest starts accruing. I am ruining my credit history just because I don't have insurance coverage for infertility treatments, not because I am financially irresponsible.
  • I've considered looking for a job in a different state that does have mandatory IVF coverage but there's no way we could sell our house right now in this market with the things that need to be upgraded and fixed.
  • I've risked having multiples by transfering up to 4 embryos back into my body because with out coverage, and lack of funds to do another IVF or a different path for quite some time, I'd rather get more bang for my buck (ie, hope for twins), or at least increase the chances that it will work. Here's a great article that says how insurance coverage for IVF will actually help the health care system save money in the long run, because single embryos transfers would be the norm and the health care system wouldn't be as burdened with such a huge increase in multiples births that require expensive pre-natal, neo-natal and ante-natal care.
These "creative ways" to save us a little money and get more information about why we haven't been able to conceive yet don't even begin to include the emotional costs on me, Tidy and our relationship that comes along with this great financial burden and struggle to understand what our next steps should be.

And that brings up one last point. We're at the point of our 4th failed IVF cycle, but we really have NO answers. I make pretty decent "looking" eggs and they fertilize well. My uterus is healthy looking. The only other thing that could be wrong is either my body is rejecting the embryos for some unknown reason, or our embryos are chromosomally abnormal. We can't really test for the first and to test for the second (genetic testing on the embryos) will require and additional $6000 on top of a regular IVF cycle. We also have no gaurantee that the embryos would make it long enough to get to a stage where they can be tested. So I'm faced with ASSUMING our embryos are abnormal and jumping into a donor egg IVF cycle. There is, however, always the possibility that it's not my eggs but my uterus. So our next step, which could end up costing about $30K is a HUGE gamble. If we did have some insurance coverage, we would have done the genetic on the embryos sooner and had a bit more knowledge to help us make our decision. Right now, I still feel like I'm stumbling around in the dark.

So, no, infertility treatments are NOT covered by insurance, but more of them should be. And I can make a good case for it.

To end, here are a few great links about Infertility 101 and also National Infertiltiy Awareness Week background.

Wednesday, April 27, 2011

More Moments in the 2ww

Here are a few random snippets from a desperate mind during it's 2ww:

  • 9dpo - I've been dizzy for the past few days. THIS WORKED! OUR NIGHTMARE IS OVER. CELEBRATE!
  • 10dpo - Dizziness is a bit less. OK, WELL, SYMPTOMS COME AND GO. OUR NIGHTMARE IS STILL  OVER (MAYBE)

Seriously. These last two days have been awful. I'm panicky, I can't focus on anything else other than just knowing what the result will be and moving on. Today, I feel like this has failed. Please spare me comments about how not everyone feels symptoms before they test positive. I don't buy it. I know how  my body reacts when I have a trigger shot in it (HCG). I know my body too well. It's doing all those wonderful things it does about 5 or so days before I usually get  my period: Skin break out, a bit more oily skin, boobs are getting a bit smaller...

I know a few days ago I said I had some calmness in me about this, but not now. I'm a mess.

I was talking with a fellow IVF vet the other day and we agreed, this is pretty much how the 2ww goes. We can break the emotional roller coaster up into about 4 segments:
  1. Calm, peaceful hope
  2. Despair, no way this worked
  3. As beta gets closer, just a few days before, DELUSIONAL HOPE sets in! YES! It worked!
  4. Failed cycle, earth shattering sadness, have to figure out how to pick up pieces.... again. Is this really my life?
I think I'm in the #2 right now. Despair, no way this worked... but I don't foresee #3 being on my radar... not after how I'm feeling today. I've done this too many times. So #4, here we come...

Monday, April 25, 2011

Moments in the 2ww

Some moments, I feel like this could work.

Most moments, I feel like this has failed and we're gonna have to figure out a plan B.

But the best moments right now are when I realize that for the last 'x' many hours or so,  I haven't thought about it... at... all!! I love when work is busy during the two week wait.

One week down. One to go. The easy half is over and I'm staring the hard half in the face, trying to figure out how to proceed through it... Pee on lots of sticks? Over-analyze any and all twitch and or feeling that isn't really normal? Stare at the toilet paper every time I wipe?

I think for now, I'll just try to breathe.

Saturday, April 23, 2011

Happy ICLW!!!

Happy ICLW! Sorry it's taken me a few days to acknowledge it, but wow, has this week been a busy one at work.... which is a good thing, considering I'm in the middle of my 2ww. For those of you who are new to my blog, please look at the tabs up top to read about my story. Tidy and I have been ttc for 4+ years. We've met some wonderful people along the way that have helped us through this and I truly feel we are stronger people. But we're still not parents and we don't really have an end in site yet. We're still looking.

In short, we are in the 2ww of a frozen transfer and I'm up and down, like usual. This is possibly our last chance with our own genetics before moving on to donor eggs or adoption, but we're not really 100% sure yet. We don't have a solid plan B if this transfer fails and that scares me a bit, but I know we'll figure it out... eventually.

I used to blog with a more public profile at As Fast As My Baby Can. Feel free to go there and read my prior posts.

Happy ICLW and welcome to my blog if this is your first time. Please follow me and Tidy along on our "Tumultuous Trip" and leave a comment below to let me know a bit about you.

Thursday, April 21, 2011

Dirty Slate

My clean slate I wrote about a few days ago got dirty today.

I'm angry and worried. I know what I wrote about worrying and I will try not to worry, but I think today my hope is just low. I was driving to work and instead of listening to my usual NPR Morning Edition, I turned on some more angry tunes that I have in my collection and just belted it out... I'm angry at myself today for believing that this could work. Why should I believe that? It hasn't yet. So why should it now?

I see this though a lot in many repeat IVF-ers in the infertility world: The definition of insanity is doing the same thing over and over and expecting a different result.

I'm insane.

(Welcome back emotional roller coaster of the 2ww... I loathe you :-) )

Tuesday, April 19, 2011

Clean Slate

Its funny.

This is my 6th transfer... yup....6th.

I have a lot of pain and sadness and anger from the fact that were are in a place that I never though we'd get to.

But there's also a part of me that can easily let go of those memories and wipe the slate clean. Its strange. While I don't have the same giddy, naive certainty that this is going to work, no problem, like I did when I went through my first IVF about 2 years ago, I still feel hope. I still feel like this really COULD work. I'm not sure how likely it is, but the fact that it COULD work gives me enough to focus on these next two weeks.

Its a strange calmness that I feel.

This calmness is new. I'm not sure if it's coming from the experience of going through this struggle and knowing that freaking out during the 2ww doesn't help any, or if its an inner calmness coming from something else.. some deeper wisdom... or the fact that most of the people I know in real life, save for a few friends, don't know about this at all.

Here's a quote a wonderful and dear friend of mine shared with me (Thanks Mags):

"Worry does not empty tomorrow of its sorrow; it empties today of its strength".

As always, I like to remind myself in the 2ww that no matter what, Tidy and I are strong and have survived through to this point. And we will survive through this cycle as well.

Monday, April 18, 2011

Fears, Dreams and French Pastries

Last night I slept terribly. Well, I slept most of the first half of the night, but I was tossing and turning, wondering if we were making the right decision or not to transfer these 3 day2 embryos.

I also woke up around 4am from a strange dream. It wasn't all that strange, but there was this feeling in it that I can't quite put my finger on...I dreamed that I was holding a baby...  my baby, I think...on my stomach and it was fast asleep and the baby kept squeezing me, holding on to me tight. It felt great... But then my sister told me that I shouldn't hold her like that, it might cause the baby to lose circulation (where does my mind come UP with this stuff, huh?) And I felt bad, like I was doing something wrong, like I was second guessing my ability to be a mom. (And what does my sister know? None of them are mothers yet either)

I think I still fear that I will be a terrible mother sometimes. But it's interesting because in real life, I feel strong. I feel like I can carry a baby in my body and I can go through the pain of labor and come through a victor. But I worry that I won't be a good caretaker of my baby. Not necessarily as an infant, but as a child, when they start emotionally interacting with me, and as a teen, when they need discipline and love, in a way that helps them learn from their mistakes... I think some of this fear comes from issues I have with my mom and my relationship as I was growing up. During times when her bipolar disease was very active, most of the time I really struggled being around here. I missed having a mom that I thought I should have and wanted one that was different, one that was emulated by my friend's and Tidy's moms. And so I did a lot to not be around her much. And I feel guilty for that. I'll expand more on this later, but its something that I must still carry with me as it surfaces here and there.

Last night I was also worrying about what to do if this fails. I usually have a plan B and this time I certainly don't. We can't decide what our next steps should be. All that I see on the horizon should this fail is a lot more money. Money that we don't have. Money that we'll have to go into debt for. That's now how I want to bring a child into this world! (Although, yes, I know, many children are born to parents who are in debt...) But we have been able, to this point, not go into too much debt with our fertility stuff which I feel very fortunate for.

Here I was, just a few days ago, all nice and calm, and happy with a little surprise that we get to move our FET up a bit instead of being sidelined for a month, and now, the fear has set in. The fear of the 2ww, the fear that we aren't taking the necessary steps to give us the best chance. The fear that we have wasted money on this last cycle without learning anything. If I had to do this all over again, I would have grown all of our embryos out to day 5 and done genetic testing so at least we would have had some knowledge about weather or not our embryos could even make it and give us more information on if we need donor eggs or not.

And now, if this fails, and decide to go move forward to something else, I'm not comfortable going to donor eggs because we STILL don't know if it's my eggs or if it's my uterus.... FUCK... I feel like I wasted a whole crap ton of $$.

So there's a lot of fear with this one my friends and I will try my hardest to let the fear go and hold onto the hope that regardless of what is or isn't wrong with my uterus or my eggs, we still have a chance... We have 4 chances in fact.

And here I type, PUPO  with 3 day2 embryos and potentially a 4th from my ovulated follicle. Transfer was this morning at 10:30 am.  My acupuncturist came with to do a pre and post transfer session and even brought along some pastries from an amazing french baker in town. Yeah, I know... pastries are NOT what the Chinese medical doctor ordered, but at the point of a 4th IVF, 6th transfer, I'm throwing all rules out the window.

Now, let's just hope that I can survive through these next two weeks focusing on that hope and more amazing pastries and not on the fear.

Saturday, April 16, 2011

Walking Pharmacy

Ovulating a big follicle (23mm) kind of hurts! Can you imagine what it would be like if you had to ovulate all the eggs you grow in an IVF cycle? OUCH!

I triggered my 1 little persistent, Lupron-defying follicle on Thursday night and can definitely feel ovulation pain today. Its amazing that it is occurring just about about 36 hours after the shot. My body does actually respond to SOME type of med in the right way.

Also, I started a plethora of other shots and pills for luteal phase support today. I'm a walking pharmacy.Here's the list:
  • Progesterone (2x daily Crinone gel) - I like this WAY better than the PIO. Hate hate hate those shots in the bum. Oh, and welcome back Prednisone! You know how much I love you.
  • Baby Asprin (1x daily 81mg) - See note below in Levenox.
  • Estrace (3x daily 2mg tablets) - Anyone else take this much estrogen during their 2ww?
  • Prednisone (1x daily 20mg tablets) - I took this for my last 2 transfers and it seems to help with the feverish feeling I got with my first 3 transfers.
  • Levenox (aka - low molecular weight Heparin. 1 40u SQ shot daily) - This, along with the baby aspirin above can help those with high APAs (which I have tested positive for, although this topic is heavily debated). I figure, it can't hurt, and maybe it can help, so I'm willing to give it a shot.
Yes, this may seem extreme, but I'm willing to try anything at this point.

Desperate? ... Maybe.

A Dr Google whore?... .Definitely!

Wednesday, April 13, 2011

Lush Lining

There is definitely a theme to this cycle, and that theme is the letter "L".  Maybe that just means it will finally be my lucky cycle, huh? (Yeah, reaching... I know... but a girl can try, right?)

A few days ago, I posted about my "Lupron Limbo" and now it seems that I have a "Lush Lining", lush enough to decide that it's just too pretty to pass up and our FET will now, not only NOT be delayed, but moved forward about 5 days from the original plan (pre-Lupron Limbo). We will now be PUPO on MONDAY!

Here's how we came to that decision: I went into the RE today to check to see if the follicle that I had been growing while on Lupron (which, my RE says usually only happens about 5-6 times a year for them) had shrunk after a week more on Lupron. And of course, as I had known yesterday after a nice showing of the fertile lady juice, it had not only NOT shrunk, but had grown from a measly 14mm to a nice big whopping ripe follicle of 23mm.  So of course I was thinking our FET would most definitely be delayed until mid May.

But, my lining was a beautiful thick and luscious 10mm.

So my RE's husband, who just so happens to also be an RE at the same clinic and was doing the ultrasound this morning, said, "Wow! Look at that lining! Picture perfect. This is just too good too pass up. Let's see if you haven't already ovulated (by taking my progesterone and LH levels) and if not, we'll trigger that follicle and do the transfer early next week"


I didn't even know that was a possibility! This isn't a natural FET, because I was on Lupron, but it also didn't take any estrogen to prep my lining because it was all my own... So what do you even call this?

So they drew my blood and after it confirmed that the big, fat 23mm follicle has not ovulated, they said it's a go! I am to trigger that sucker tomorrow and start my progesterone this weekend and we will thaw and hopefully transfer all 3 of my remaining day-2 embryos from my January IVF cycle on Monday and as quick as that, I'll be back in the 2ww.

I must say, I really like this way of going through a cycle... not even knowing you are prepping for it makes it all that much quicker.

And then tonight, it occurred to me, we can also not only use our frozen embryos but we've got a nice ripe follicle to boot... and with a little "hubba hubba" (for those Simpson's fans out there think the episode abotu  Mindy) this weekend, there's a possibility (albeit an infinitesimally small possibility) that we could be the proud parents of quadruplets 9 months from now. Now wouldn't that just be a dramatic way to end a fertility journey... ha!

Seriously though, at least one would be fantastic.

Tuesday, April 12, 2011

Hugs Needed

One of my dearest friends just found out, after 4 beautiful blissful days of pregnancy from her first IVF that her second beta dropped. Her hope that this nightmare was finally over is shattered.

Please go visit Cherm at Handling Plan B and give her some support. She could certainly use it.

Saturday, April 9, 2011

Reminders in the City

I always feel better about life and my future prospects of being a mom after a visit to see my sisters for a night out in the city.

I'm the oldest of 5 children. Me (36), J (sis, 33), J (bro, 31), L(sis, 29) & C(sis, 26)...

Yes, my mom was fertile.
And yes, my parents are Catholic.

All of my siblings, except for me, live in a very fun neighborhood in the city, within about a mile or so radius of each other. Every once in a while I go down after work on Friday for a night out on the town. It takes me a few hours to get down there, depending on traffic and I SO enjoy getting into my car, cranking up the tunes and driving in my zippy car.. (Ha, just thought to my self, Tippy's got a Zippy! I'm such a dork)... Where was it... Oh, the energy of the city is so fun. It gives me a boost, a charge, especially at night. In my next life, I will definitely live in a big city, in a high rise and not own a car or a house and take public transportation everywhere and eat out a lot... It sounds SO wonderful and sexy to me.... But I digress.

So we had dinner and some drinks at a fantastic French-Mexican fusion restaurant with my sister J, some of her friends and my other sister L, all for J's birthday. Besides the good food, drink and dressing up, it's also great to be reminded that there are a lot of women out there near my age who aren't mom's yet and that's... ok!  They have fun, fulfilling lives and they don't have the agenda of needing to have already popped out a few kids. I think I forget that sometimes because I am so immersed in a life here in my smaller city where all of my friends are parents 2 or 3 times over and most of my other friends are those that are trying and struggling to be parents just like me.

Reminding myself that I'm not the only one at my age with out children, even though that should be a VERY obvious statement, is a good thing to do every once in a while... and heck, if I HAVE to go to the city and have a few drinks and awesome food to do that.... I think I can manage.

Thursday, April 7, 2011

Lupron Limbo

I went into my RE today for my baseline ultrasound to see if my body was suppressed enough by the Lupron so we could start our FET cycle... After 4 years and 4+ IVF cycles, I've been getting pretty good at looking at my ovaries on a sonogram screen. As soon as my right ovary came into view and focus, I knew right away that our FET would be on hold.

My body just didn''t want to listen to the Lupron this month and it decided to grow its own follicle... grrr. 1 follicle, 15mm, E2 = 102. And today is CD5 after my birth control period.  Oh, and a bunch of antral follicles to boot. So I have to stay on Lupron for a week and go back in to see if it has shrunk. But my hunch is that it won't (ie, it's a "functional cyst") and we'll have to be sidelined for one more month.

But I'm not really that upset. I guess maybe because I've been through this so many times (not the growing follicle thing, but just cycling in general) that what's one more month, right? And part of me thinks that maybe, just maybe, this is the universe's way of saying, hold on girlie... your brother is getting married out of town in early December and there's no way we want you to be late in your third trimester during his wedding, especially since it involves an airplane ride and such. So we'd better make you wait another month or so... Gee, thanks universe... really... thanks... because, um, we could have just done this a few months ago instead when I did my IVF clinical trial and already HAD the baby by his wedding....but NO...

I digress.

So here we stand, in Lupron Limbo for another week, and most likely another month...

Oh, and a strange side note for those of you who believe that our bodies should be and used to be more in tune with nature. The 'functional cyst' thing that happens to many of us in an IVF cycle when they are trying to suppress us with luteal phase lupron, occurs MUCH more frequently during the spring (per my RE).... hmmmm..... Spring = Fertile time of the year?????

I think it just goes to show you that no matter how much we try to and think we can control the human body, there are other forces out there at work laughing at our futile attempts.

Sunday, April 3, 2011

Gracias, Mexico

A week can do wonders, especially when it's a week on a beach in Mexico.

Tidy and I had a great time together. We EVEN had sex for fun!!! Can you believe it? A 4+ year veteran of the infertility world having sex.... for ... FUN???  Wow.

Needless to say, it was a welcome break.

I also fell in love again... twice... once with an old friend (tequila) and once with a new friend (chilaquiles). I love Mexico.

But now it's back to reality and in the past two days since we've been back, reality has hit me hard. I've already cried to Tidy a few times, saying, "Take me back there! I wanna go back!!!"

First, I started Lupron for my FET during the latter half of my trip. I was really proud of myself for not bruising my belly and was able to still wear my bikini the whole time! I go in for my baseline this Thursday and am hoping that I am suppressed enough so that I can start my estrogen. Even though an FET is way less stressful than an IVF cycle, I still am anxious about getting into the 2ww again and getting my hopes up. Moreso, I'm anxious that we made the right decision to put these embryos back in me and not into a surrogate or even try to test them for chromosomal issues... but in the end, I didn't want to risk not having these embryos to transfer and so I guess we'll never know if my eggs truly suck or if I've just been unlucky 5 times, or if I really do have immune issues.

I also have a free phone consult with CCRM next week, but I'm not really sure I will learn anything new or want to change the course of this FET based on a 5th opinion... or whatever it is now... I can't keep track. Maybe I should read my own timeline.. LOL!

Secondly, I'm anxious for a different reason... And maybe now that I've gone 'incognito' from the majority of my IRL friends and family, I can more openly discuss another family issue that has caused me pain and anxiety... you see.... My mom is bi-polar and schizo-effective. And I love her. And she's an amazing mom in many ways, today... But she's been this way for at least 30 years. For the last 10 years or so, we've been blessed as a family that my mom has stayed on her medication and for the most part has been stable, but there are times here and there that signs of a 'sick' mom peak through and it puts all of us on edge. And that's occurring right now.... and I can't control it... and it makes me worried and anxious that she will have another episode...

... there's so much more I could go into here, but I will say that I do believe growing up in an unpredictable childhood, no matter how hard my dad tried to keep our family as stable as possible, has somehow affected my fertility. I think there's some deep issues in my psyche that relate to my relationship with my mom and have prevented me from truly being open to motherhood in some ways.... for now... i'll leave this topic at that, but the figurative can of worms has been opened.

So, on the night before I have to go back to work and give up my spring break from infertility and from worrying about the health and well-being of my family, I sit here wondering where these next few weeks will take me and hope that I can keep some of the peace (and fun sex) that I gained on the beach this last week...  Gracias, Mexico, for a much needed respite.