“Everything’s Gonna be Alright”

alrightI woke two days ago at 3 a.m. with the chorus to David Lee Murphy and Kenny Chesney’s “Everything’s Gonna be Alright” running through my head. I was wide awake but calm despite the disappointment of the night before (see Round 2: Thursday Week 3).

There was nothing to do but wait for our clinic to open at 8 a.m. Mountain time, 9 a.m. our time.  I had to lead a training session (complete with administrators) at 9 a.m., so I made sure my supervisor would be present to take over because there was no way I was NOT answering the call even mid-training.

Luckily, my phone rang around 8:40 (thankfully our nurse is an early-rising over-achiever, too).  She said they’d fixed the issue, so I could go ahead and reserve donor #2622.  She verified that we were just going to go right ahead and accept her (usually once a recipient reserves a donor, the nurse calls with additional information and to confirm the reservation).  I confirmed, hung up, and reserved our donor from my cell phone.

We got her.

Later in the afternoon, our nurse called back with additional information.  She had contacted the donor to let her know she had been chosen and to get her cycle day 1 information.  She had already ordered the donor’s birth control, so a few hours later I got the call from the pharmacy for payment information.  Now, we wait.  Once our donor calls in with cycle day 1, we’ll have a tentative retrieval week.

As this cycle is fresh (last time we used a donor who had already completed retrieval and had frozen eggs), the process is a little different. Typically, with a fresh cycle, the donor and recipient submit their cycle information as well as any “black out” times (when they are unavailable for a retrieval or transfer).  Then their cycles are aligned so that approximately five days after retrieval (and insemination), an embryo (or two) can be transferred directly to the recipient.  Then any remaining quality embryos are frozen.

However, we’ve also chosen to CCS test the embryos (for more about testing see A Little Q&A and To Test or not to Test…).  Just as with a regular fresh cycle, the eggs will be retrieved and inseminated, and any resulting embryos will grow for five or six days to the blastocyst stage.  However, instead of immediately transferring the embryos, the embryologists extract DNA from each and then freezes them.  The DNA is tested for chromosomal anomalies.  Abnormal embryos are discarded, and the remaining embryos are available for transfer. Because of the time required for testing and freezing, our cycles do not need to be aligned, so we aren’t tied to each other’s schedules and availability.

At a guess, I think the earliest we could transfer is November.  Once our donor hits cycle day 1 (assuming the next two months are good for stimulation and retrieval), it’s approximately six weeks to retrieval.  Testing can take anywhere from two to six weeks.  (The clinic “batches” DNA testing, so once they get enough embryos to test, they’ll run a batch.)  Then my protocol for transfer is about another six weeks.  It looks like we’ll be transferring around the same time as our first transfer with the last donor.

For now, we’re back to waiting. But at least we’re not waiting on Thursday updates anymore.

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Round 2: Thursday Week 3

I logged into the database early, so I could compare the remaining donors to my cheat sheet and update my list.  New donors are not identified as new in any way, so the easiest way to see who is new is to keep a list of who was there before and scan the list to compare their donor numbers.  In updating, I removed #2523 who had been on our short list from the week before.  I was disappointed she was gone but not surprised.

But even though I was preparing, I was over it even before the database was supposed to update at 5. Then when refresh after refresh revealed no one new at 4:05 and 4:10 and 4:15, I went on about chores for the evening, internally ranting about how stupid having to have a donor is and how stupid the database is and how stupid it is that we have to race against other desperate couples to get “our” donor.

After doing a few chores outside, I came back in and refreshed the screen again.  Three or four new donors popped up.  I quickly skimmed through them, looking first at ethnicity and then at their donor histories.

There was one repeat donor who was not dissimilar to those from previous weeks.  There was also a new donor who was tall, six foot tall to be exact, but wasn’t a repeat donor.

About fifteen minutes later, I got a call from our nurse.  She was very excited about number 2622, the six foot tall donor.  She was, in fact, a repeat donor with 33 eggs retrieved with 26 mature and a positive pregnancy resulting.  Her most recent tests showed an AMH level of 2.41 and 26-28 resting follicles.  In addition, she’s gorgeous–“looks like a model” even.  Our nurse couldn’t gush about her enough.  She strongly encouraged us to consider her.

So after hanging up, we reviewed her profile again.  She had a 3.9 GPA and a degrees in Pastry and Business.  She is a pastry chef.  We discussed.  We decided to accept her.

I clicked the “reserve this donor” button.  Then, I confirmed that I did, in fact, want to reserve this donor.

But a red banner appeared: “Members can only make one reservation.”

What.  The.  Fuck.

I tried again.  error  I tried on another browser.  error  My husband tried on his computer.  error  Red banner error, red banner error, red banner error.

Some technical glitch won’t let us reserve her.  I called our nurse.  No answer.  I called the main nurse line.  No answer.  I left message after message and even sent an email through the patient portal.  Everyone had gone home for the night.

The only other reservation we have made was nearly a year ago for our first donor.  We’ve not reserved anyone since.  And yet, we’re locked out.  We can see her pictures.  We can read all about her.  We can fall in love with her.

 

We can’t reserve her.

 

How Do You Choose?

A little over a year ago, I wrote How do you choose the mother of your children?  Even though we selected a donor and tried twice to conceive, I still don’t have a good answer to this question.

Having been through the selection process once, we thought we knew the type of donor we were looking for: an unremarkable medical history, a solid educational background, a physical build relatively close to mine, hair and eye color within an acceptable range.

But having been through the transfer process once, we now have additional factors to consider: number of donations, number of eggs retrieved and blasts created, number of resulting pregnancies.

Now we’re balancing our preferences in a donor with her donation history.

scale

Which side does the scale tip to?

In the database are two donors our nurse likes.

#2413 is a sixth time donor.  She’s 5’5″ and 176 pounds with blonde hair and blue eyes.  All of her last three donation cycles have resulted in double-digit blastocysts: 14 (March 2018), 10 (2017), and 13 (2016).  While looking at her baby pictures, I wrote a note that says “looks like she could be my sister.”  On a “matching” scale of 1-10, our nurse says she’s a facial match of an 8 but  didn’t initially bring her to our attention due to the mismatch in physical build.  She had a high school GPA of a 3.0 and an ACT score of 21.

#2523 is a second time donor.  She’s 5’6″ and 140 pounds with blue eyes and brown hair.  Her previous cycle yielded 17 eggs and 9 blastocysts.  Her most recent follicle count was 21.  Our nurse says she’s a better body type match but not a great facial match (a “6”), but she is very, very pretty.  She had a high school GPA of 3.5 and an ACT score of 26.  She has a B.S. in Nursing and is working on her Nursing doctorate while heading up a high-risk obstetrics department.

So which do you choose?  The donor who has a history of high egg production and is good facial match but lacks other qualities we were looking for.  Or do you pick the donor that produces fewer eggs but is a better physical and educational match?

Or do you go rogue and pick #2273.  She’s a sixth time donor who is 5’5″ and 145 pounds with brown hair and brown eyes.  Her donation history is exceptional: 2017: 56 eggs, 36 fertilized, 19 blasts; 2017 (earlier): 35, 33, 16; and 2016: 43, 19, 15.  According to our nurse, she’s very pretty but not a good physical match.  She had a 2.5 GPA and a 32 ACT score.

On one side of the scale sits the donation history; on the other are the qualities we’d like to have. Which weighs more?

There are lots of questions considering history.  How many blasts do we really need?  Those high numbers from the repeat donors inherently sound good (our three blasts last time was a disappointing number for both us and our doctor), but how many is too many?  If we transfer multiple embryos at a time (and there’s no question that our doctor will let us transfer two at a time) and we have ten embryos (some donors had even more), that’s potentially five transfers.  If we are successful early on, there’s no way we’ll use them all.  If we’re not successful, do we really want to try five (or more) times?  (Because as long as you still have frozen embryos you feel an obligation to keep trying.)  Can we afford to?

On the other side sits all the qualities we were hoping for in a donor.  This side determines half of our children’s genetic make-up.  How much does the donor’s hair color really matter?  I’m blonde but my husband is brunette and carries blonde in his family.  A brunette child would fit right in.  How much does body type really matter?  There’s a range of body types in both my and his extended families.  What about educational background?  We all know that GPAs and test scores don’t tell the whole story.  But some part of us does really care about all of these things because we’re choosing the woman who replaces me.  She’s my substitute; she’s supplying my half.

On one side of the scale sits the donation history; on the other are the qualities we’d like to have. Is it possible to find the donor who balances both?

Back to the Database We Go

Today is Thursday.  I’m in a familiar place, sitting on my living room floor in front of my computer.  I was here last week too.  And just a few months ago, I was here every Thursday for weeks and weeks.

Thursday is database update day.

This is week two of our second search for an egg donor.  Last time, it took us 8 weeks to find donor #2561.  This time we have to be even more selective.  In addition to finding a good “match” for me, we’re also looking for a proven donor–a woman who has previously donated, has high numbers of eggs and embryos which resulted in successful pregnancies.

Unfortunately there are few repeat egg donors.  After approval, sperm donors can walk into the clinic and leave shortly, donating repeatedly with little hassle.  Egg donation is much more complicated.  Donors undergo the same battery of invasive tests, and once approved, the same rounds of medications.  Their ovaries are stimulated by multiple daily injections, sometimes swelling to the size of grapefruits.  Then, they are anesthetized for retrieval–a surgical procedure involving yet more needles.  If unlucky, a donor’s ovaries may be overstimulated, and after retrieval, the follicles can fill with fluid.  It’s understandable that many women only donate once.

Last week there were the twenty women in the database (the same twenty were there today); six are repeat donors.  Of those, two are on their sixth donor cycle.  Their numbers are outstanding.

Woman one’s most recent donation was in 2017.  The clinic retrieved 56 eggs, 36 fertilized, and 19 embryos made it to the blastocyst stage.  Earlier in the same year, she had 35 eggs, 22 fertilized, and 16 blasts.  In 2016, she had 43 eggs, 19 fertilized, and 15 blasts.  Unfortunately, she’s not a good physical or personality match for me.  Our nurse confirms that we look nothing alike.  (We get to see childhood photos of the donors but no present-day photos to protect their anonymity.)

Woman two’s most recent donation was in early 2018.  She had 24 eggs, 15 fertilized, and 14 made it to blast.  In 2017, she had 17 retrieved with 10 blasts.  In 2016, her numbers were 32, 17, 13, and in 2015, 21, 13, 5.  When I looked through her childhood photos, I noted that we could have been sisters.  Our nurse confirmed that we couldn’t find a better facial match.  However, our body types and education are much different.

Both women are still in the database today, for as successful as they are as donors, they aren’t as physically desirable as others.

And here’s where someone “out there” starts to criticize.  She (or he) begins to argue that the physical appearance of the donor shouldn’t matter.  Mounted on her high-horse, she comes charging out to declare that even considering the physical characteristics of our donor is, at best, shallow.  Because, after all, wouldn’t I still love my child no matter what he or she looked like?  And I couldn’t guarantee the physical appearance of my child even if it was my own.

And here is where I pause to take a really deep breath (or ten) before I continue.

We all like to think (and say) that looks don’t matter.  We’re quick to point out that there are plenty of very attractive people who we don’t like because they aren’t very nice.  We argue that we select our mates on qualities other than their physical attractiveness.

I don’t disagree.

But, we must also acknowledge that physical attraction does play a role in our selection of partners.  Whether consciously or unconsciously, we consider the physical traits our partners may pass on to our children. While fertile couples imagine their unborn children as having “his nose” or “her eyes,” for donor-recipient couples, half of the picture is simply incomplete.  Because no matter who we choose, our children won’t have any of my parts, and we don’t get to see their mother.

index

Would you go blindly into half your child’s gene pool?  Would you select a random partner based only that person’s fertility?  What if you were the one giving up your genetic link to your child?  Would you still choose blindly?  Or would you want to select someone like you in all the best ways?  And unlike you in all the best ways?  Which qualities would be most important?  Which would be less so?  How do you choose?

There’s no one right answer here. It’s too complex and personal to apply a formula to it.  And it’s just one of the many factors that infertile couples must consider that fertile couples simply don’t.

Let’s look at this from another perspective.  Potential donors undergo genetic screening, and in each of their profiles is a section identifying and describing the genetic conditions they are carriers for (if any).  For many of these conditions, selecting the donor means resulting children could also be carriers for it.  However if the donor and the partner are both carriers of the same disorder, it means the child could have the disease.

My husband is a carrier of mucolipidosis.  Until we started fertility work, no one in his family knew.  It’s possible that his siblings are also carriers of this disorder.  My husband (and his siblings) never considered this disorder when selecting their partners or having children.  They didn’t know they had to.  No one would blame them if they accidentally passed a genetic disorder on to their children if they didn’t know they were carriers.  Similarly, no one would fault us for ruling out a donor who is a carrier of mucolipidosis.  In fact, we’d be judged if we selected her.  Because we knew better.

But here again, we’re faced with another set of decisions that most fertile couples simply aren’t.

It’s easy to judge our choices when you’ve never had to make them.

 

The Cost of Infertility

buying happiness

I’ve joked that conceiving a child costs some people a Friday night’s bar tab, but for those of us with infertility, the price is much higher.  It’s no wonder that one of the most significant barriers couples face when struggling with infertility is financial.  How will we even afford to try to have a child?

Although there is a range of prices and providers for IVF, the universal truth is that it’s expensive.  Take a minute to go check out this IVF Cost Calculator.  Click around, check out the different sections, do some calculations.  See how much it would cost you to have a child.

According to the calculator, a basic IVF cycle (with the lowest dose medications and without any additional procedures like ICSI or preimplantation genetic testing) is about $12,000.  Now run it with those additional “options,” which aren’t really optional for many infertile couples.

Of course, even with all the “options” checked, this calculator doesn’t cover every possible procedure in every possible scenario, so you better add a few thousand (or maybe ten thousand) extra.

college fund

It also doesn’t cover things that we don’t think about like repeated labs (I was tested for “communicables” aka STDs, three times in a year and a half), multiple ultrasounds, annual exams, appointments with general practitioners for conditions the specialist wants treated at home, appointments with urologists for male-factor infertility, back-up sperm freezes, travel and lodging expenses, advertising charges, and coordination fees among others.

Now remember that cost comes with no guarantee of success.  When we started talking about trying IVF with my eggs, we were given a 30% chance of success.  Some family members said, of course, why wouldn’t you try?  All I could think about was spending money that would pay off half our mortgage for a 1 in 3 chance of having a child.  Usually, when you pay tens of thousands of dollars, you go home with something–like a new car.  And of course you should know, many fertility clinics require full payment up front.

Now go back to that calculator because you, like most couples with infertility, did not have success with your first IVF cycle.  Maybe you were lucky and have frozen embryos left, so on the next attempt, you’ll “just” need to pay for medications and the transfer, unless, of course, your doctor orders new tests (like the biopsy I had to the tune of $790 plus $384 of medications plus an office and procedure call).  But, you may be unlucky, like us, and told to use a donor.  So go back to the calculator and run some numbers for using a donor or a surrogate.  And remember, there’s still no guarantees here.

“But what about insurance?” you say.  “We pay thousands of dollars in premiums, surely it will cover infertility treatment.”

I’m going to just leave this meme here:

elected to be infertile

According to Resolve, while 1 in 8 couples struggle with infertility, only 1 in 4 insurance policies cover treatment and only fifteen states mandate infertility coverage. (Kansas isn’t one).  Some couples relocate to states with mandatory coverage; others switch jobs or pick up second and third jobs with infertility benefits.

But before you get too excited because you live in Texas (or one of the other covered states), you should call your insurance company and see what coverage they provide.  It’s likely you’ll find that your company doesn’t have infertility benefits because their plan is written in a state that doesn’t require it or your employer is “self-insured” and exempt from the law.  If insurance does provide benefits, you may only qualify after trying to conceive unsuccessfully for a specific number of years.  Or it may dictate the providers and clinics you can use.  Or it may restrict certain procedures or require others in a certain order or for a certain number of tries regardless of your doctor’s treatment plan.  Or it may cover diagnosis and medications only.

Since insurance isn’t going to cover your necessary treatments and medications, you’re going to have to look elsewhere to fund your infertility treatment.  Some couples drain their savings accounts, some take out credit card after credit card, some get loans from companies specializing in medical finance, and some use the financing options that few fertility clinics provide in house.  A few couples qualify for and are awarded grants through infertility organizations and not-for-profits.

Others find more creative ways to pay for treatment.ivf fund jar

I’ve heard of one woman who held online auctions with donated crafts to raise money.  Many woman join direct-marketing businesses (like LuLaRue or Rodan & Fields) and use their income for IVF.  Still others make GoFundMe and other crowdfunding pages.

I was asked once if someone could create a fundraising page for us to spread awareness and help us afford our treatment.  I declined because of reactions like this:

can't afford

 

(Because paying tens of thousands of dollars up front, repeatedly–and, yes, adoption is just as expensive as IVF if not more–is totally the same as that of raising a child over decades.)

 

The last two things couples struggling to conceive need to worry about are how to afford medical care and judgment and negativity concerning their decisions. Yet these two issues are often at the very the top of the list.  Imagine being diagnosed with an often treatable medical condition with a vast array of causes from genetic to physical to hormonal to . . . to . . . to . . . (the list is never-ending).  Or, worse yet, knowing something is wrong and that there are treatments available but never even getting a diagnosis because it’s unaffordable.

That’s when you start to incur the real costs of infertility because you don’t just bankrupt your finances for infertility.

You also bankrupt your

  • relationship
  • patience
  • hope, joy, and faith
  • confidence
  • family and friends
  • strength
  • hopes and dreams and wishes and plans

And you trade all your resources in on a membership to the infertility club and it’s many benefits:

  • a whole new vocabulary
  • complicated calendars
  • cycle day 1’s
  • diagnostic testing
  • pills, pills, and more pills
  • hormone replacement therapy patches and vaginal suppositories
  • anxiety
  • trigger shots
  • multiple reminder alarms
  • bruised veins
  • a bruised belly
  • and a bruised backside
  • ultrasounds
  • needles and needles and more needles
  • and band aids
  • invasive exams

Then one day, when you finally come up for air, you check your account to find that all that’s left is

  • guilt
  • embarrassment
  • fear
  • anger
  • jealousy
  • regret
  • depression
  • anxiety
  • pain
  • isolation
  • humiliation
  • and judgment

And you still don’t have a baby.

 

Last week, we learned that our frozen embryo transfer (with our one remaining embryo) failed.  A few days ago, we had a consultation with our doctor.  He’s sure that we could have a child and wants us to try again.  He thinks the donor eggs were probably the problem as so few made it to blasts.  This time he wants us to select a proven donor (preferably one that “over-produced” eggs and embryos and ideally resulted in multiples).  He’s even offered us $5,000 toward the next cycle, plus donated medications (but the nurse says they don’t get a lot of these) and $5,000 toward genetic testing of the resulting embryos.  Sounds like a good deal, right?

It’s tempting.  Because what if it works this time.

But what if it doesn’t.  And how can we afford it either way?

 

What’s the cost of infertility?  More than anyone can afford to pay.

On Father’s Day

Two days ago, I entertained the fantasy of celebrating our first Father’s Day, of getting to say the words “Happy Father’s Day” for the first time to my husband.

Instead, we’re doing all the normal weekend things.  He’s fixing the mower I broke yesterday and changing the oil in my car.  I’m mowing the lawn.  Later, we’ll  plant a couple of trees.  Today is just another Sunday for us, another quiet day in our house with no little helpers.

He hasn’t said anything, and he won’t.  I won’t either.  And we don’t want anyone else saying anything to us.  We won’t acknowledge today because it’s easier to pretend it’s just another day even though Facebook is full of Father’s Day posts and pictures of proud daddies with their prouder daddies’ girls and mini-me’s.

We won’t say anything.

Because after everything, there’s still no father’s day in our house.

b936047b1dc66ece806bc3d6c336caf9--roller-fathers-day