Details, Details, Details

It’s easy to get caught up in all the excitement of picking a donor and getting her scheduled.  Riding the emotional roller coaster of donor selection and the are we– or aren’t we– of reserving her and establishing the retrieval made it easy to forget about all the other details.

Over the last few weeks, we’ve addressed a variety of these details. We’ve made two separate payments to a national pharmacy for our donor’s medications.  My husband and I both signed pages and pages of documents assuring that we understand the process (yep–been here, done this), consenting to the transfer (obviously), and acknowledging the many possible negative outcomes of IVF treatments (sure–damage, maiming, death).  We also signed a second set of documents authorizing genetic testing of the embryos (and, again, acknowledging the limitations and possible negative effects of such testing).  We also signed yet more documents agreeing to the use of donor eggs (this time notarized and mailed), and I signed a financial agreement outlining the very many charges and fees of the process.

Save Sig

Even after all of the agreeing, consenting, and acknowledging, today was another detail day.

I started the morning with a call to our clinic’s business office for billing information.  I knew that full payment would be expected prior to our donor beginning her stimulation medications (which should be very soon) and that failure to pay in time would result in a cancelled cycle.  Since I hadn’t received a statement (because of all the signing, I had been checking my email frequently), I called.  The woman in the business office said they had sent the billing information through the portal on July 26.  Somehow, I’d missed it (but I never did see the email notification about the message).  She emailed me the information again.

The original statement was sent 7/26.  The payment is due 8/3.  If paying by check, the check must be mailed a week before it’s due (which was 7/27—really, clinic?  one day to get this in the mail, really?) or overnighted.  This resulted in a frantic transfer of money from one bank account to another, the writing of two hyper-ventilation-inducing checks, and an emergency, hour-long trip (one way) to town to overnight the payment (to the tune of another almost $25).

I also sent a message to our nurse to determine the tests I needed before our transfer as it has nearly been a year since the last tests.  In August I’ll have to “re-up” my pap and physical and in September, my TSH, T4, and antibody screening.  When I come up for the transfer, I’ll also have to have the entire battery of “communicables” (STDs) tests run, again so will my husband when he goes up at the retrieval.  (Note: none of this is included in the package cost of the donor cycle.)

I followed up that message with a call to my local doctor to schedule the pap and physical appointment for late August (for my insurance to cover the exam and accompanying labs, the last test has to be at least a year old).  I also asked our nurse to send the physical form (again–this is physical number three? four?).  While, in theory, any general practitioner should know how to do a physical, the first time I had one done for our clinic, the doctor didn’t write good enough notes about all required areas, so I had to pay for a second physical with a different doctor.

I also got a better timeline from our nurse.  We can draw up my transfer calendar on the first cycle day 1 after the embryos are sent for testing (which should be early September).

Remember, the eggs will be retrieved and fertilized sometime around August 16-22.  Five to six days later, the embryos will have reached the blastocyst stage, and DNA will be extracted for testing and the embryos frozen.  Testing can take up to several weeks.

Starting the calendar in September could cut several weeks from the timeline, with our transfer happening perhaps as early as October (instead of November-December).  So while I run myself crazy trying to keep up with all details, our timeline grows shorter.

August; No, September; No, August

calendar.jpgA few days after choosing our donor, our nurse called to tell us our donor was at cycle day 1 and would begin her medications soon.  This put the tentative retrieval date for Aug. 22-26.  Later that night, the pharmacy called for payment for the rest of her medications.

A few days later, I received an unexpected call from our clinic.  Our nurse began, “Well, I have some bad news about your donor . . .” and I, of course, filled in the blanks, fearing she was backing out for some reason.

“. . . the August retrieval isn’t going to work for her.  She has to travel for work–something just came up–during that retrieval time or the recovery time following, so now we’re looking at September.”

That’s all?  Really?  This is not what I would consider “bad news,” but okay.  So we were waiting for the next cycle day 1 and tentative retrieval dates for September.  Although inconvenient (and pushing our transfer date dangerously closer to next year and a new insurance year), this delay certainly wasn’t awful, and there was nothing we could do about it anyway.

Today, I missed a call from the clinic while I was switching laundry.  When I checked the voicemail, it was a message from our nurse.  I returned her to call.  “We’re back on with the donor,” she began.  I don’t know what changed or why, but our retrieval is, again, scheduled for Aug. 22-26.

“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.

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.

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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.