Archive for Logistics and strategy

How I think about DE

Originally I wanted this post to be about why we chose to pursue donor egg (DE) for now as opposed to adoption or child-free living.  But then I realized I couldn’t really explain that without talking a lot about how Mr. Nishkanu feels about it.  And Mr. Nishkanu did not ask to have his private thoughts and emotions posted on the internet.  So instead I will talk about how I personally orient to DE.

This is an assvicey kind of blog generally speaking and to fit in with the theme maybe I should have titled this post “How you should think about DE.”  But with this topic it is even more obvious than with my usual blog fodder that this is not going to be a one-size-fits all decision.  Nevertheless I thought it might be useful for other people who are thinking about pursuing DE (or DS) to hear the stages I went through on the way to finding a positive orientation to DE.  I want to emphasize that everything I say in here is purely about how I think about DE  for us and is not meant to be a commentary on what other people are doing or how they should approach this family-building method.

To be honest, when I started TTC, DE was not even remotely on my radar.   I went to an elite university and was turned off by the ads in our school paper from (in my eyes) rich people who were willing to pay big bucks for beautiful young women with high SAT scores, athletic abilities, etc. to donate their eggs.   That left a really bad taste in my mouth about the politics of DE and how they tie to our ideas of what makes women valuable.  It seemed kind of like prostitution, using young women’s bodies with no respect for their feelings and taking advantage of an income difference to coerce a woman to do something she wouldn’t normally do.

So my initial orientation to TTC was that we would try with our own gametes, and if that didn’t work, we would adopt internationally.  Once our first RE gave up on us, we started talking about further options – a second opinion, DE, or adoption.  At that point I was pretty much ready to go to international adoption (aka “saving a poor young child from a lifetime of poverty”), but then we got our optimistic 2nd opinion and lots more rounds on the IVF Hamster Wheel of Doom instead.

The advantage of this postponement was that, being a “Let’s Have a Plan B” type of person, I had a lot of time to think through the implications of various alternative family-building methods.  I read through a big pile of books about adoption and about donor gametes.  And in doing this reading and thinking about what these options might mean for us, my thoughts about how these family-building methods would work with us really started to change.

My attitude about what kind of adoption  would be right for us changed a lot after reading about the implications of different kinds of adoption for the adopted child.  I can’t go into all the details without talking more than I would like to about Mr. Nishkanu’s situation, but it basically came down to the fact that after a lot of reflection about our personal situation, what we thought was ethically justifiable, and what we could offer a young child, the kind of adoption that made the most sense for us was domestic open adoption of a Caucasian infant.  And what was clear from that was that, far from “saving a poor child from a life of poverty” as I had initially thought, we would be joining an enormous queue of parents who wanted to adopt a Caucasian infant.   This was the true zero-sum game, for if we adopted a particular child, another couple would not.  That made the morality of the situation much less clear-cut than I had initially (rather naively) anticipated.

At the same time, Mr. Nishkanu became an advocate of the DE approach.  The first time he brought it up, I looked at him like he had sprouted an extra eye in the middle of his forehead, and then said, “I will only do it if we do not pretend that it is my genetic baby.”  I don’t know why this is the first thing that occurred to me, but I felt strongly about it then and still do, that for me it only makes sense to do DE if we are going to be totally open about it, not only with the child but with everyone around us.  Initially I thought about this in terms of the weirdness of having people comment “Gee, her eyes look just like yours” or “What do you think he has from you and what from your husband?” and then making up some kind of fake genetic connection.  I’m not interested in living with a big lie at the center of my life.  Later on I thought more and more about the true gift that is DE, how unenlightened people are about it, and how happy I would be to share my joy about what it had brought us (assuming it works for us… another story).  To me DE is kind of like half an adoption, and we fortunately don’t hide adoption any more, so I don’t see why we should hide DE.  Though I intellectually understand the arguments about letting the child decide for him/herself who should know, that’s not what feels the most right to me.

In any case, I started to read about donor egg and realized that the situation was much more complex than I had initially thought.  There is a lot about the way that donor egg is organized in the US that I still really don’t feel comfortable with; it is crazy how unregulated the business is and how all kinds of sleazy things are perfectly legal (e.g. paying a young woman $50,000 for her eggs – in my opinion there is no way we can talk about true informed consent when so much money is being paid).   In one of the countries where I have lived, donor egg is illegal, and whenever they talk about donor egg on TV they immediately show websites in the US of egg donation programs which are marketing donors like some kind of weird Miss America contestants – e.g. The Egg Donor Program: ” Our Los Angeles based egg donor clinic has the most beautiful and accomplished donors in the country” .  And frankly, I think they are right, that stuff is embarrassing to me (note I am not saying it is necessarily bad to use such an agency, I am just uncomfortable with it myself).

But just because it can be that way doesn’t mean it has to be.  Given the unregulated state of egg donation in the US, each individual couple has to decide for themselves what they think is acceptable and what isn’t, and how they will go to to work with an egg donor in a way that works for them.  And for me, after a lot of reading and thinking, the following defined “works”:

  1. I wanted to work with a clinic or agency that had high ethical standards, that made sure that egg donors really knew what they were getting into and were fully counseled before proceeding, and that treated egg donors like people and not like a commodity.  It is almost impossible to get reliable information about the ethical standards or medical or psychological screening of egg donor agencies.  Therefore, we decided to work directly with a reputable clinic egg donor program affiliated with the ASRM rather than using an independent egg donor agency.  This also saved a hefty agency fee and reduced the problems of mismanaged communications.
  2. We wanted to find a donor who could be contacted by the child later.  The studies that have been done of adult donor children suggest that many of them feel a real hole in their identity if they cannot contact the donor and know little about them.  This also jives with what is known about adopted children.  Unfortunately, clinics on the East coast do not generally allow for any kind of contact, even if the donor herself would wish it; for example, our original clinic told us they would only release donor contact info if required by a court.  To have the potential for contact with a donor, you have to go to the West coast.  That is a hassle when you live on the East coast, but I felt we owed it to our future kids to make that possible for them.  On the positive side, West coast clinics have a lot more donors available, you can pick your donor yourself, and you do not need to share a donor as you might at an East coast clinic.  (It would have been extra fabulous to find a known donor, but unfortunately my dear friends and family who volunteered all had their own infertility issues to deal with and were not considered appropriate by my clinic).

In terms of the morality or ethics of the decision, what I initially had seen as a black-and-white decision between ‘good’/altruistic adoption and ‘bad’/selfish donor egg turned out to involve a lot more shades of grey.   When looked at closely it is hard to see domestic Caucasian infant adoption as “giving a needy child a loving home” when there are so many loving homes already waiting for these children.  And if pursued under the right circumstances, egg donation could be an amazing gift from a fully informed, consenting donor.  I ended up feeling that the decision between these two was really a toss-up, I could be happy with either.  Two things pushed me to try donor egg  first: (1) Mr. Nishkanu felt more comfortable with it (2) if I had the chance to have Mr. Nishkanu’s child and I didn’t do it, I thought I might regret that later.

And so we decided.

Deciding for DE is not the same thing as being happy about DE though.  That will be the topic of another post.

Please note that I am providing this information to provide one perspective that might be helpful to other people considering donor gametes, not because  I want to make my family-building decisions subject to the peer review of the internet.  Comments that provide alternative perspectives are very welcome, but comments that suggest we are wrong or evil because of how we are building our family will be deleted.

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When a doctor says “I can’t help you”

I did 5 cycles with my own eggs before switching to DE.  Five cycles is a lot – a lot of money, a lot of hassle, a lot of pain, a lot of tears.  But when I look back now on it, and ask myself “am I sorry I did it?”  the answer is, basically, no.  If I had known going in what was ahead of me, yes, I would have gone to DE or adoption immediately and not looked back.  But I didn’t know what was ahead of me, and as a result doing the cycles was necessary for us to feel that we had really exhausted the possibility of having biological children before we were ready to move on.

There is only 1 cycle that I really regret, and that is not the last cycle but cycle #2.  Cycle #1 I had done at a clinic relatively close to my podunk hometown.  It had not gone as well as I had hoped – 3 embryos were transferred on day 3, one so fragmented it looked like pizza and the other two having a pretty meager cell count.  I ended up pregnant, but went through a low beta hell and ended up miscarrying.

When I went in for an ultrasound during the hell period, the friendly RE on call told me not to worry, just being able to get pregnant was a good sign, and many women go on from a miscarriage on the first cycle to get pregnant on the second.  Unfortunately this RE had apparently not studied my chart carefully enough, because when I went in for my follow-up appointment my own RE told me that things didn’t look good, my embryos were of poor quality, and this was probably because my eggs were getting too old.  I was in a “gray area” where maybe I could get pregnant and maybe I couldn’t.  She was reluctant to let me cycle with them again, and thought I should start thinking about donor egg.

So what did I do?  Did I listen to this doctor, for whose special expertise I had paid a ton of money?

No, of course not!

I had just gotten pregnant, I was so close, this couldn’t be taken away from me so quickly.  I begged and pleaded with the clinic to let me cycle again.   Eventually they relented and let me do so.  And the cycle was a total disaster – they put me on microdose Lupron to get my ovaries in overdrive and then blasted me with massive doses of Follistim.  The result was a giant dominant follicle and the dreaded phone call on the day of transfer, “Your embryo is probably dead, do you want to transfer or should we call it off?”  We decided to transfer but knew going in we were probably just giving the embryo a more comfortable burial.

Something that still pisses me off to this day is that when I asked my nurse at the clinic why I had gotten a dominant follicle, she said “We don’t know, sometimes it just happens.” “It just happens”, my foot.  It happens when you are undersuppressed, and I was undersuppressed because I was on microdose Lupron instead of regular dose.  I switched to Cornell after this cycle, was put back on regular Lupron, and made lots of eggs and lots of beautiful-looking embryos.  Sadly, none of those stuck either, at least not for good, but at least the clinic knew what it was doing with me and had an appropriate protocol.

So was my first RE right when she said that I wouldn’t be able to have a child with my own eggs?  I don’t know.   I miscarried on cycle 4 because of a chromosome deletion, a problem that is not age-related; it is, as my RE said, “just bad luck”.   Maybe if my luck had been different I would have carried to term, or maybe I was lucky just to get pregnant at all.  But what my first RE was really right about was that she couldn’t help me. She did not know how to handle the problems we were presenting her with.  She told us so but we did not believe her, and as a result we wasted energy and money on a cycle that might have worked if we had switched to a clinic thatdid know how to help us.

If I had it to do over again, I would say that when your RE tells you they don’t know how to help you, it’s because they really don’t.  It doesn’t mean you have to give up – you may be able to find another doctor or another clinic that can help you.  But cycling with an RE who tells you they don’t know how to get you pregnant is a waste of time, energy, and money.  When a doctor says “I can’t help you” – believe them.

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Cycling in the US from abroad

When we first started TTC when I was making plans for my life I would plan my future travels, adventures, and activities around the fact that I might be pregnant.  After “might be pregnant” stubbornly refused to happen (at least in any longer-term fashion) I realized that it was kind of a waste of my life if I was not doing things I wanted to do because I might be pregnant when pregnancy was about as common around here as a whole herd of rainbow-farting unicons (as Kymberli so eloquently puts it).  I decided I was going to do with my life what I wanted to do, d*mn it, and infertility could s*ck it.  So that is how I ended up doing two and a half cycles in the US while living abroad, in two different countries.

Since I was used to cycling at clinics that are far from my tiny, RE-less home town,  I didn’t expect that cycling from other countries would be all that different, they would just involve longer travel time.  But there are a bunch of special pitfalls and issues that arise, particularly when you are working with a US clinic from different medical systems. In this post, I wanted to note what the issues were and how we learned through trial and error to handle them.  This post is written from the point of view of a US resident working with a US clinic from afar, but some of the material is likely also relevant to foreigners who want to work with a US clinic.

1. Consider carefully whether you should cycle remotely from abroad or use a local clinic in the foreign country where you are residing.

This is obviously the first question you need to answer.  In our case the answer was pretty simple, because we are doing DE w/ an unknown, but contactable donor, and due to regulation that was pretty much impossible in or near the countries where we were living.   But even if we could have cycled locally, we probably wouldn’t have, because we would have had to start the difficult process of searching for a clinic we trust all over again.

More generally, in deciding whether to cycle locally, you need to know something about the regulations used for IVF and how they are going to affect your choices about your cycle and the resulting success rates.  For example, Italy recently passed strict regulation of IVF which allows no more than 3 embryos to be created and which requires all 3 embryos to be transferred.  Obviously limitations in the number of embryos that can be created are going to reduce the success rate of an average cycle, and depending on the circumstances regulations that allow the transfer of only a limited number of embryos may affect your success rate as well.  There are certainly legitimate reasons why countries may want to regulate IVF in tighter ways than is currently the case in the US, but what you need to think about is whether you will be able to cycle the way that is right for you in the country you are planning to stay.

Another issue, of course, is cost.  I do not need to tell you, my dear infertile reader, that the US is a very expensive place to cycle, and if you add onto that the costs of international flights and the need to stay in hotels for a substantial amount of time during your cycle it doesn’t look pretty.  Often cycles in other countries may be substantially less expensive.

2. Use a clinic that is used to cycling from abroad and has a system in place to deal with it.

A prior clinic that we used had its systems set up with the expectation that you were a local resident (despite the fact that it had a ton of out-of-town patients).  When you did tests away and had them faxed in, they always lost them and it would take several phone calls and faxes before they had the results.  It was extremely difficult to reach people by phone and you were always waiting for callbacks.  Email seemed to be a foreign concept.  “My” nurse had no clue who I was unless she had my chart in front of her and would have to reread it.

These things are annoying if you are an out-of-town patient in the US, but they are really going to be a kink in the works if you are also dealing with a substantial time difference.   There are a thousand ways something can go wrong and if you don’t have good communication set up with your clinic the window of fixing the problem may disappear before they even realized something was up.

Our current clinic advertises on its home page that it can handle cycles from abroad, and it can.  It has a great communication system – I can reach people easily by phone and by email, and I usually get a response the same day, even from the RE and even about non-urgent stuff (and email is really super helpful for communication across radically different time zones).  When they say they didn’t get a test result, I know they really didn’t get it – they have never lost anything.   Even though I almost never see them in person, I feel a close sense of contact with them and all my health care providers  know and respond to my individual situation.

3.  Find a local health-care provider who can help you navigate the foreign health care system – ideally an RE.

When I did remote cycles from within the US, it was always pretty straightforward to deal with things like bloodwork and ultrasounds – I would just walk into an urgent care center, show them the paperwork from my RE (and my credit card), and we’d be off to the races.  And, for the meds, my clinic would call in prescriptions to my local pharmacy or a mail-order pharmacy and there they would be.

This does not work out so well when you are abroad.  Sure, I’d had a couple of HCG tests abroad and done it this way (the worst was when I showed up at Christmas time at a hospital in Mr. Nishkanu’s home country asking for a beta test, and the nurse cheerfully said “Weren’t you here for one of these last Christmas too?”  Yeah, and it was negative then too.  Thanks for the reminder.)  But for the full gamut of pre-cycling needs you really need someone who is connected into the system.

In my experience, other medical care systems are simply not ‘customer-focused’ in the way I was used to in the US, and it frequently takes a professional who knows what they are doing to get results.  In one case, I was not able to actually get my beta results (either given to me personally, nor told to my clinic) for 5 days, until I found a local nurse who just made one phone call and told me the result.  This while I knew I was not pregnant yet had to keep giving myself PIO shots “just in case”.  Grrrr.

In practice, a general practicioner is the minimum you need – someone who can prescribe medication, ultrasounds, and bloodwork for you.  But if you are at all able I would strongly recommend that you find an RE who is willing to do your cycle monitoring.  This will save you many explanations and possible errors made by well-meaning but fundamentally clueless health providers (trust me, it is a bit worrisome when you realize that you know a lot more about infertility treatment than the person who is your gatekeeper to meds and tests).

And now I want to take a time-out to write a little Ode to Joy about how great our local RE is on this cycle.  We chose him 100% because of his proximity to our home – after all, he is just doing some bloodwork and ultrasounds, we don’t need anything special from him.  But special is what we got.  Here are some of the amazing things he does.  He takes endless time for our appointments, even though we are ‘just’ monitoring patients.  He calls personally with all test and blood results, even boring things like estradiol levels.  He gave us his home number to call when our meds got stuck in customs and we were worried our cycle was going to be derailed (see below).  Although he was only supposed to be monitoring,  he cheerfully wrote me prescriptions  for the meds that would not arrive in time.  And everyone in the office is so nice.  I *heart* them.  But I digress.  And speaking of medications…

4. Purchase as much as possible of your medication (including ‘things I might need, you never know’) in the US beforehand and/or while you are there for your cycle.

As is blindingly obvious once you think about it, yet did not occur to us beforehand, American doctors cannot prescribe medications abroad (i.e. a prescription from a US doctor will get you nowhere, at least legally, at a foreign pharmacy).   This leaves you with three options: order your meds from the US; get your local provider to supply you with meds; or play it safe and buy the meds when you are in the US (even if you have to e.g. buy 10 weeks of PIO before you know if you got pregnant).

Now if you order the medications from your favorite US mail-order pharmacy, they will get hung up in customs.  Trust me, we learned this one the hard way.  In one case, our sent-by-express-mail meds arrived a month after they were sent (though our BFN in the meantime had conveniently rendered the medication not needed).  In another case, we did desperately need the meds and spent a harrowing week on the phone with fed ex trying to get the meds out of customs, which had declared them illegal for importation (this was after our pharmacy had assured us that they could definitely, no problem, send us the medication to where we were living).  We did finally get them out by showing lots of proof that I was a US resident only temporarily in the country.   But we got them too late to use one of the medications, and had to buy a local version of it in addition to what we had ordered.  If you know the cost of fertility meds, then you know – ouch.

Now if you have followed suggestion #3, you have a local doctor who can write up all your prescriptions for you.  That is certainly a good option and is really important if anything unexpected comes up in your cycle.  The one caveat is that you may not actually be able to get prescriptions for the medications your clinic wants you to use.  For example, in one country where I lived it was not possible to get Lupron.  Instead, I got Decapeptyl.  Decapeptyl is similar in action to Lupron, but not the same thing.  And the further you get away from the drugs your US doctors are used to using, the less benefit you are getting from their experience.  Their protocols are optimized for the drugs they normally use, not whatever drugs you might be able to get.

In my opinion, if you are spending all the time, effort, sanity, and money to go through a cycle, then it’s best not to add any complications that might reduce your chances.  For this reason, whenever possible we planned ahead and had the meds shipped to us when we were on American soil.

5.Don’t forget about jet lag.

Whether this is an issue will depend, of course, on how big a time difference there is to your clinic.  One thing I can tell you from sad experience, though, is that if you have a time difference that is normally at least somewhat challenging to overcome, you will have a much greater challenge overcoming it during your cycle.  This is because, at least for me, it is a lot harder to get over jet lag when you are stressed out.  And when you are cycling, there is a certain amount of stress involved.  I expected to be over my jet lag in a day or two, but I have been home for almost a week and I have yet to be able to sleep more than 5 hours a night, and often substantially less (I usually need 8 hours to function)***.  I am now intimately familiar with the part of the night from 2 AM onwards.  There’s not much you can do about it, but it might be smart not to plan that you will get too much done for a while after you get home.  My major goals for the day right now are: (1) remember to eat and (2) remember to take my meds – and believe me, that is sufficiently challenging.

  • ** Update to add: just found out my thyroid values are screwed up.  So maybe that’s why the adjustment has been so hard.  But I still hold by the stress = bad jet lag adjustment from previous experiences…

Things to consider if your cycling method is illegal in the country you are in (e.g. donor egg/donor sperm):

One  of our DE cycles was done in a country where DE is illegal.  I didn’t anticipate any problems since the actual DE part was done in the US.  But there were some tricky issues for my health care provider, since it was not clear whether it was actually legal for him to help me with my DE cycle.   Fortunately he was willing to do it for me anyway, and I found out later that it is very common for doctors in this country to do cycle monitoring for out-of-country DE cycles.  But to avoid problems you may be wise to do the following:

1. Research the IVF regulations in the country ahead of time so you know if there is anything they would consider unkosher about your cycle.   Note: I wouldn’t think that technical issues like how many embryos that country allows for transfer are anything you need to worry about.

2. If there is something that could be legally problematic about your cycle, make sure your local health provider knows about this up front.  The last thing you want is to get part-way through the cycle and then find out that your health care provider is uncomfortable with continuing to treat you.  Find out from your health care provider whether s/he thinks this will be an issue in any way.

3. If your health care provider indicates that it could be a problem, remove references to the legally problematic aspects from any written records you give your doctor to avoid putting them in a compromising position.  In our case, the referral letter from my US RE did not say anything about donor egg in it.  When I gave my doctor my cycle schedule, I went in and edited it to take any references to donors out – fortunately my clinic sent me this stuff as an Excel spreadsheet.

Have you cycled from abroad?  Are there things I am wrong about, or didn’t include?  Please add in the comments.

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The doctor doesn’t know what it’s like

When I started my first IVF cycle, I had read a book that suggested that you should take a month off work when you are cycling, to deal with all the appointments, stress, and what not.  I asked my RE if that was really true.  “Oh, no”, she said, “you only need to take off the day of the retrieval.  And maybe the next day.”

Yeah, right.

I work in a job that requires mental effort and concentration.  Those things were completely shot once I went on Lupron.  The week before my retrieval my colleagues sent me home because I was forgetting my sentences in the middle and staring into space.  The week after my retrieval I spent lying on the sofa in pain.  Thank god I have a job where I can work flexibly.

So, do you have to take a month off work?  No, you don’t.  People have different reactions to the situation.  For some people throwing themselves into their work helps to reduce their stress level.  It also depends on the kind of job you have – even though I had the short term memory of a goldfish I found rote work and things where you work with your hands quite soothing during my cycle.  But if your job requires you to be mentally with it, or to be a diplomat of tact, you might want to think about taking some time off.  And if you are an air traffic controller, for god’s sake, take pity on the rest of us and stay at home.

But the real moral of the story is not how much slack to cut yourself during a cycle (answer: as much as you possibly can).  It’s that the REs are very savvy about how to run IVF cycles,  but they don’t have a clue what it’s like actually being in one.  They don’t know how crazy you get, how much it can affect your emotions and concentration, how unbelievably stressful it is.

Before embarking on my last cycle with my own eggs I asked my RE what I could do to help manage the stress level of the cycle, since I knew going in it wasn’t going to be pretty.  He said, “We have a psychologist – you could make an appointment to see her while you are in town.”  Are you kidding me?  2 weeks of total hell is going to be offset by one psychologist appointment?   That underscored it for me – REs just have no idea what you’re going through.

So if you want advice about how your cycle should be managed, how many embryos you should transfer, etc., ask your RE.  But if you want to know how hard it is and how to stay sane, don’t ask your RE – ask your fellow travellers or a therapist who is familiar with infertility.

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