My Amendment to H.R. 1628

Thanks to the behind-closed-doors method the Senate is using to try to pass TrumpCare, you now have the opportunity to request that your personal health care premiums not increase by any passing of the bill.  You submit your amendment and ultimately your Senator can decide whether or not to bring it up for inclusion in the bill.  It is then introduced, read, debated, and voted on.  You can learn about the whole process at http://www.ouramendments.org and submit your personalized amendment there.

Some of the essential agreements of the amendment are:

  • [your name] shall not experience a rise in health insurance premiums or a reduction in premium tax credit or assistance with paying cost-sharing.
  • [your name] shall not experience any annual or lifetime limits on coverage; or higher costs due to a pre-existing condition as defined in Section 2705 of the Public Health Services Act.
  • [your name] shall not experience the loss of coverage of any Essential Health Benefits as defined in Section 1302 of the Affordable Care Act or have to pay more in premiums or cost-sharing for coverage including all Essential Health Benefits.

Pre-existing conditions include things like asthma, cancer, and infertility.

Essential Health Benefits include pregnancy, maternity, and newborn care, as well as prescription drugs, lab services, preventive and wellness checks, pediatric services, hospitalization, and emergency care.

I ask you to protect yourself from losing coverage and seeing your premiums increase due to the tax breaks the TrumpCare bill will give to big businesses, like pharmaceutical companies.  Submit your own amendment.  And if you’re up for it, submit your personal story for your Senator to enter into the congressional record, as I did.  For inspiration, here’s what I submitted:

I am a mother of two with a preexisting condition that affected my fertility, a condition which wasn’t discovered until after my doctors declared I was infertile and put me through a battery of tests. I have a Mullerian anomaly – a unicornuate uterus – which means I was born with only one half of my uterus. As a result, many infertility treatments were not feasible due to my congenital abnormality, and I had a high rate of miscarriage as well. When I finally had a viable pregnancy, the fetus suffered from intrauterine growth restriction and was breech. Due to this high risk pregnancy, I had twice-weekly ultrasounds to ensure my baby was growing and healthy. I also had the additional burden of a C-section due to the breech position. I cannot imagine going through this ordeal without the provisions afforded women by Obamacare. I write today on behalf of women everywhere who might have an undiagnosed preexisting condition like mine to respectfully urge the Senate to keep protections for preexisting conditions, to keep funding for essential programs for low-income women like Planned Parenthood, and to keep healthcare affordable by not giving tax cuts to the wealthiest members and businesses.

If you’re so inclined, go ahead and comment with your amendment as well.

I realize it’s not exactly popular for me to have taken a political slant with my blog.  Most of you are probably just curious about what it was like for me to go through everything, and maybe it helps you feel less alone and gives you hope for building your family in whatever capacity that means for you, which brings me such great joy.  Although my infertility struggles are over, I see my role now to be a role model for others, to share everything I learned from the process, and to ensure women are empowered with the information they need to make the best decisions they can for themselves and their (future) families.  That means letting you know when major legislation affecting how infertility, prenatal, and pediatric care might be decreased (or increased!) and giving you the tools to help do something about it.  You may not agree with me, but it does not change the fact that I will continue to advocate for policies that will benefit you through the lens of infertility.  Even if I no longer have a personal need to benefit from those policies.  Maybe that’s just the mom in me.

*I’m not a professional protester, and I have not been paid or hired to write this post.

The Affordable Care Act and Infertility, Revisited

Several years ago, during the heyday of this blog and my adventure as an infertilite, I wrote a little ditty about how increasing Americans’ access to health care was a good thing, and that the law that would become known as “Obamacare” was particularly good for women.  Little did I know that post would become one of the most read and searched for of all the posts in this blog.

So I’m going to do it again.

On the “verge” of “repealing and replacing” the Affordable Care Act (ACA, aka Obamacare), we face a lot of unknowns about what will actually happen.  A draft of the first version of the bill was circulated just 24 hours ago (notably to news outlets that have been denied entry into the White House Press Room), but it’s still just a draft and there may still be many battles to fight.  Therefore it would be a waste of my time to simply go through the draft and say all the problems that are wrong with it.  Instead, I’d like to give you the information to take to your representatives – local, state, and national – so you can tell them how you, fellow infertilite or concerned citizen, are personally impacted by the benefits of the law.

Are you a woman with health insurance?  If so, you’ve probably noticed that your annual visits to your OB/GYN, mammograms and other screening procedures, and birth control contraceptives are covered.  If you have been pregnant in the last few years, all of your visits pertaining to pregnancy, whether to your general practitioner, a midwife, or MFM specialists, are covered.  The birth is covered, too.  Providing for well-care visits and pregnancy-related care is a national mandate of ACA.  The proposed repeal and replace bill removes the national mandate for insurance companies to cover pregnancy, meaning that it will be up to your state and/or the marketplace to determine how much coverage is provided for and how much you would have to pay out of pocket.  Which means that, should you happen to only have access to plans with minimal coverage, you might have to choose between keeping your electricity on and paying for your hospital stay.  Tell your representatives that providing for pregnancy-related care is a basic human right.

Do you have a pre-existing condition, such as, I don’t know, infertility caused by a uterine abnormality?  Under ACA, an insurance company cannot deny you coverage based on pre-existing conditions.  The draft bill released yesterday keeps most of this part of “Obamacare,” but does limit the kinds of conditions allowed under protection.   Tell your representatives to keep this protection of coverage for all people regardless of pre-existing conditions.

Do you want to wait a few more years to have a child just so you can get a bigger tax break on your insurance?  Currently, the ACA provides subsidies to cover some of the cost of an insurance plan based on your income, so that the burden of coverage is more evenly distributed.  The draft bill proposes that older people, who generally are sick more often and have more medications, would get a bigger tax credit than a healthy 30-year old – almost twice as much.  But where is the equality in this situation when the 30-year old might more likely have one or more dependents who need coverage, and family-level insurance plans aren’t exactly a bargain.  Tell your representatives to keep tax credits for health insurance based on need, not on an arbitrary factor such as age.

Do you think your property taxes are too high?  You might be wondering what property taxes might have to do with health insurance, so let me explain.  Services such as Medicaid are provided by your county in part from federal money that they are granted.  Republicans have talked about creating “block grants” of money, essentially capping the amount of federal money states have access to, which leaves states, counties, and cities in a terrible predicament: do we cut services to people on Medicaid – for instance, do we close nursing homes which would displace seniors and increase unemployment in our community for the doctors, nurses, and workers who worked there – or do we find another way to pay for it?  And they’ll likely find another way to pay for it through your property taxes.  Tell your representative to keep Medicaid expansion.

Finally, I’m going to address the issue of Planned Parenthood, which under the Republican bill would lose all federal funding.  Supposedly because, and solely because, it provides access to abortion services.  What they don’t tell you is that the other 97% of services provided by Planned Parenthood to men and women across the country include preventative health exams, providing contraception, tests and treatments for STIs, Pap smears, breast exams, and outreach to schools and college campuses.  One in five women have reportedly visited a Planned Parenthood at least once in her life (see the link here).  I know abortion is a highly personal topic and questions about life run so morally deep I can’t even begin to illustrate the range of them here.  But I do know that this country was settled by a brave group of individuals at Plymouth who were considered outlaws in their home country for their beliefs and who sought to find a place where they could live as they chose in peace.  Tell your representatives to let us continue to live our life as we choose, to keep our choices for what we do with our bodies our decision, not decided for us by lawmakers, and keep the funding in Planned Parenthood.

I will continue to update the blog as progress on the health care bill continues.

Oops, I did it again

At my two-month checkup after giving birth earlier this year, my OB/GYN told me I could get pregnant again before I even got my period back.  I kind of rolled my eyes at her and said, “Are you serious?  Yeah, I don’t think that will be happening.”

“You’d be surprised,” she said.  I countered by reminding her it had taken me two years to finally get a pregnancy to stick.  “You never know,” she said.  I dismissed her advice.  Given the fact that I had beaten the odds with my son at every turn, as I’ve detailed throughout my early pregnancy, I really didn’t think I’d have the luck to beat the odds again.

I spent the first few months as a new mother panicking about the idea of raising an only child.  I worried that he would be spoiled, unable to socialize with others, not having any playmates growing up.  I worried that in old age he would be solely responsible for my husband and I, that he would have no one else to confide in.  I thought about my relationship with my sister, and my husband’s with his siblings, and I wanted those same bonds to exist for my son.  And I dismissed my feelings and resigned myself to being a great mom even if that meant only being a mom of one.

Well, here I am, 12 weeks pregnant, against all odds.  I am still holding my breath, as if none of it seems real.  And knowing what lies at the end of the road, I’m a little more nervous about another c-section.  Sometimes ignorance is bliss.  My OB/GYN group this time around is taking a wait-and-see approach to my care; “It’s possible you just make small babies,” one doctor said.  “That’s just how your body works.”  At this point I feel utterly clueless about how my body works.  Why now and not four years ago?  What about my body is so different?  It’s older now; I thought you were supposed to be more fertile when you’re young?

I’m already fielding questions, again somewhat unexpected, that seem somewhat insensitive to the infertilite journey.  “Well, I heard your body is more fertile after being pregnant,” said one nurse.  This doesn’t seem like a statement of fact to me; and she’s a nurse.  “Are you still considered high risk even though you’ve already been stretched out?” said another person.  And my answer: “Yes, I am,” because the uterus returns to its usual size after pregnancy, which for me is the shape of a deflated balloon.  A little deflated banana balloon.

Here we go again!  I will be tracking both responses to my pregnancy as well as observations going through this for a second time.  For me it is all about getting through one day at a time, and being thankful for the family I’ve been blessed with.  And my wish for you is to give you Hope, that though it seems preposterous, though it seems far-fetched, though it’s something you might roll your eyes at, it’ll happen for you and sometimes when you least expect it.

Freaky Friday and the minor miracle

At my week 10 appointment I officially “graduated” from the fertility clinic to my OB/GYN group.  My PA performed the ultrasound and let me watch the baby the entire time she took measurements.  I was shocked at the amount of movement going on in there that I couldn’t feel at all.  Little kicks and little waves, already trying to push its way out of the narrow spaces.  Then the other shock – hearing the heartbeat for the very first time.  I would be lying if I said it wasn’t freaky, hearing the big “BUMP bump.  BUMP bump.”  (that’s you, the doctor said) then a little “whish-whish-whish-whish-whish-whish” after she moved the transmitter a little to the left.  FREAKY.

Oh, but that wasn’t even the freakiest news of the day.  In her final measurements, the PA located and measured the follicle from which the egg had erupted.  “I saw this last time but I wanted to make double sure.  You ovulated from your right side.”  Meaning, from the ovary that doesn’t have a fallopian tube or half-a-uterus to connect to.  Meaning, that little egg had to criss-cross my abdomen to even get sucked in by the other fallopian tube, then it had to get fertilized, and then it had to be healthy enough to even stick.  And the chances of that happening in a unicornuate infertilite is like slim to none (technically less than 5%).  Maybe running 12 miles a week helped move things along?  J

Oh, but wait – the story gets much better.  There is kind of a superstition in my family that when one person dies, someone gets pregnant.  It’s just how it goes, and how it’s always worked ever since I could remember.  In late January my husband’s grandmother passed away and I really didn’t think much of it, because after all she was an in-law and probably didn’t count in my family rule.  But then I got pregnant and miscarried right afterwards.  Oh, but then I got pregnant again.  “Do you realize,” my husband said to me last week, “That you’ve been pregnant every possible time that you could have been since she died?  How do you feel about the name Agatha?”

He likes telling that story to his aunts and uncles, especially now as we are finally cleaning out her house and dividing her belongings.  I think it helps him have some kind of ownership of an experience that is largely out of his control, even if it’s not entirely true.  And thanks, Grandma Agatha, for your divine intervention, but your name still isn’t on the list.

A visitor of undetermined location

When, on my seventh cycle of clomiphene citrate – and the third round at 100mg doses – my period didn’t arrive when expected on day 28, I didn’t panic.  The previous month it had extended my cycle to day 30, so I didn’t worry.  I took a HPT which was negative and went about my business.  When it didn’t arrive on day 30, I didn’t panic either, thinking it would happen any minute.  But on day 32, when putting on a sports bra to jog was nearly unbearable, I took another HPT – got two lines – then panicked.  I purchased a different brand HPT and took it in the afternoon the next day.  Two lines again – positive.  Having just begun to accept that the natural odds were stacked against me I had to unwind all of my thoughts and start preparing for the next whirlwind of steps.  I called my clinic and was scheduled for my first blood test early Tuesday morning. 

After a six hour wait for the test results, my nurse called with the news exactly at the time she said she would.  “Congratulations!  You are pregnant.  Your hCG level is at 80.  We will have you come back in two days to check your levels to make sure everything is rising.”  W-o-w.  There was no more denying it.  I googled an expected due date (end of November).  Based on my calculations I should have been, technically, about four weeks pregnant.  On the ride home that day I thought twice before sticking a piece of gum in my mouth, wondering if the artificial sweeteners and chemicals in it were safe to ingest.  I thought better of it and put the gum down, despite the Pavlovian need I have to chew gum while driving home. I was determined to give this pregnancy every possible chance to succeed.

In those first few days I had mild cramping, deeper and higher than usual PMS cramping, which started on day 32 and lasted until the day after my first blood test (day 36).  Everyone told me this was normal to experience, and at best it was distracting, at worst mildly irritating.  But in my mind, as long as I felt cramps, something was growing.  So when they topped part of me was relieved (maybe I could finally concentrate on work), but part of me knew something wasn’t right that they had stopped so soon.  I don’t know that I could call it women’s intuition, but I guess I’ll just say my fears were confirmed with Thursday’s test result phone call, which took at least three hours longer to get than Tuesday’s: “Your hCG is rising but it’s rising abnormally.  It’s at 96.  We would expect the number to have doubled by now, somewhere between 150-160.  We need you to come back in two days.”  By now the inside of my elbow was bruised, but at that point I knew and started to prepare myself that things weren’t going to last.  I waited another 48 hours for my third set of results.  The number then was only 123.  This is the point at which they start to prepare you for the worst – that it’s ectopic, meaning in the middle of my only good tube, which has a danger of rupturing the tube and could be fatal.  I panicked, backed off my exercise routine and waited another five days for my next appointment – an ultrasound. 

I didn’t know what to hope for from that appointment.  I hoped that it wasn’t ectopic.  I hoped that it was in a place where there might be a fighting chance.  I hoped I hadn’t done something wrong to cause the word “abnormal” to become the situational descriptor of choice.  But nothing prepared me for the sight on the screen – an empty gray and white cavity (my uterus, which the doctor and nurse had both concurred, “That sure doesn’t look unicornuate from that angle”), and a dark spot barely discernible by even those who stare at these kinds of pictures all day long in the top left corner.  It was like trying to find the big spot on Jupiter, if Jupiter’s atmosphere was entirely as orange as the spot is.  “We think that’s it,” the nurse said.  “It doesn’t look ectopic but we can’t be sure.  We would call this a ‘pregnancy of undetermined location.’  But your levels are still not rising as they should.  If it doesn’t take care of itself naturally, we’re going to have to give you some medication.”  

I went home to tell my husband and to prepare for what I knew would be coming – the reality of this pregnancy being non-viable and the side effects of methyltrexate.  In typical fashion, my husband was optimistic.  “This is good,” he said.  “That’s okay if this doesn’t work out.  What it means is that it’s possible – that it could happen.  This is all right.  This is for the best.”  I wish those feelings came as naturally to me as they do to him.  That’s why I fell in love with him. 

Three days later, the miscarriage started just as it had four years earlier.  I updated the folks on the message boards I belong to, who had been sending positive thoughts and well wishes my way since the start.  And there, one of the women gave me a new meaning that eased my pain and gave me the strength to move on: 

“Maybe somebody out there doesn’t want you to give up.”

Uni-what?

A little over a week after my HSG I still hadn’t heard from my doctor’s office regarding scheduling an ultrasound or MRI, and the waiting was killing me.  I finally called them and left a message for the nurse, as usual, asking to schedule an MRI and ultrasound as a follow-up to my HSG.  The nurse called back and seemed confused.  “Why do you need these?”

“I have a unicornuate uterus.”

“A uni-what?”

“Uni-corn-uate uterus.  Dr. X. said we need to know more.”  I was about to explain that I thought I might have one kidney, though I also thought it troubling the nurse hadn’t ever heard the term before.

“Well, it’s good that you’re on top of this because clearly we’re not.”  She said it with a kind of chuckle, but I think it was her way of apologizing.  I, meanwhile, fought the urge to lay into her on the phone.  But I know in a large office things have a way of disappearing.  “We have to schedule you for an ultrasound first because the insurance won’t let us do the MRI until after the ultrasound confirms it.”  That sounded reasonable to me.  “Did she say what kind of ultrasound you needed?”

“Uhhh… no.”  “Okay, well I’m sure it’s on top of your stomach.  Go with a full bladder.”