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Why You Need to Be Your Own Advocate

Sarah Preston Gorenstein

Depending on the size of the fertility clinic you go to, it can feel a bit like a baby factory, and you can feel a bit like a case number. As incredibly personal, emotional and foreign as this process is to you, it’s very routine to them. That’s why you need to make it personal by asking a lot questions, demanding a lot of answers, finding a nurse at the clinic whom you can trust to call with additional questions, and making sure you walk out of each appointment with crystal clear instructions for your next steps.

It’s probably a little different at every clinic, but the typical protocol at each appointment goes like this: you go in for a routine baseline ultrasound and you get your blood drawn, and then wait for a nurse to call you with the results later in the day. I’m usually out of the clinic within 20-30 minutes for these routine appointments, at which I don’t even catch a glimpse of my doctor or sometimes even talk to a nurse. I strip from the waist down for my ultrasounds (done vaginally; they’re looking to see how big your ovaries are, or how thick your uterine lining is, depending on the cycle you're doing, etc.); then you wait a few minutes to get your blood drawn, and they send you on your merry, confused way. It isn’t until later in the day that I’d get a call from a nurse—usually different nurses each time—to give me the results of my blood work and tell me what my next steps are in terms of what meds to be taking next, what dose, etc.

Here’s the problem I ran into: I was working full time in an office that had no cell service. I always seemed to miss the calls from the nurse following my appointments, so I’d usually pick up a voicemail on my way home from work, which would then be too late to call back with any questions. I gave them permission to leave me specific instructions over voicemail, because I knew there was always a risk of me missing their calls (my work schedule was manic, and I was in and out of meetings all day). And because they never called me at the same time every day (sometimes 2 p.m., sometimes 5 p.m.), I never knew when to expect their calls.

And here’s why that became an even bigger problem: The week before my first FET (frozen embryo transfer) was scheduled to take place, I had another routine appointment (baseline ulstrasound and blood work), at which everything looked great (the thickness of my uterine lining was where it was supposed to be; hormone levels were good; etc). We were on track to do the transfer on Friday, November 4.

As is always the case, a nurse called after that appointment and left me a message with medication instructions; it was a Friday, after business hours, when I got the message. And it was a nurse I had never spoken to before; I didn't recognize the voice. I had to play the message three times to understand what the nurse was telling me to do. Remember, this was my first frozen embryo transfer, and this was still a little foreign to me, as in I didn’t have a complete understanding of the recipe of drugs I was taking and how each one played a role in preparing my body for an FET. 

Something very important got lost in translation over the voicemail message (which I saved for a couple of months, and played over and over and over). I was told to discontinue the Lupron injections, and was also told to continue taking progesterone and baby aspirin and start the Z-pak, the days leading up to my scheduled transfer. But nowhere in that message was I told to continue taking the estrogen pills (in fact I was told to discontinue estrogen along with Lupron), so I stopped taking it. After listening to that message a dozen times, I realize now that the nurse seemed to be mindlessly going over a generic script, without actually looking at my chart, because she also thought I was on progesterone injections (when in fact I was taking the suppositories). You can hear where she starts getting confused about what she’s telling me to do, almost side-tracked, and she probably thought she told me to stay on the estrogen pills. But, alas, she very clearly didn’t.

Even though it’s been several months since that happened, I remember it like it was yesterday: On the Wednesday before my scheduled transfer something struck me as odd. Don’t they need to see me before the transfer to make sure everything is still on track? The last appointment I had was almost a full week ago, and no one has followed up with me to make sure I’m taking the right meds, following instructions left on my voicemail? So I decided to call the clinic to make sure I was doing everything I was instructed (remember, I was on like seven different medications, some increasing in dosage over time and some decreasing in dosage over time). I also wanted to make sure I didn’t need to schedule another appointment before my transfer, which was only days away. Surely they would've told me to do so, but then again you can never be too sure about anything.

So I called the clinic that Wednesday afternoon, and in talking to one of the IVF nurses—a lovely and thoughtful woman who'd offered to be my go-to person for questions—she went over the checklist of drugs I was supposed to be on at that point, and that’s when we realized I had (unbeknownst to them) discontinued the estrogen. She told me to immediately resume the estrogen pills (3x/day), and make an appointment to come in the following day to see if everything was still on track for my transfer. But by then I had already been off estrogen for a full 48 hours, which could (and did) totally screw up my hormone levels. Just a week prior I was in "great" shape for this frozen embryo transfer...how could this have happened?

After getting my blood work back the doctor insisted I cancel the transfer. My endometrium / utertine lining didn’t look the way it should before a transfer; my hormone levels were off; there was no way to save this cycle.

It's hard to explain how deeply disappointment and devastated I was to hear this, yet again. I cried hysterically in my doctor’s office when he gave me the news. He had a resident sitting in on our appointment that day—she probably thought I was nuts. My tears were out of anger and frustration—this cycle was canceled because of simple miscommunication? Not because my body wasn’t responding the way it should to the medication? In fact, my body was responding well, and “everything looks perfect” was a common response I’d get from the ultrasound technicians and nurses.

Of all the things to mess up a cycle, poor communication was not an acceptable one to me. Being a mom, wife and writer, communication is my thing. This is why I can’t stress enough how important it is for the patient—you and me—to be your own advocate during this, or any other, medical procedure. Not only was I out thousands of dollars by this point, I had put my body through hell for months—for what felt like nothing, two canceled transfers later. It felt like my embryos were being held hostage at the lab. I know that's not exactly the case, but it sure felt that way in November.

I was assured, and reassured, that as a result of this mess-up, the clinic had "handled the situation," and the nurses were given new, stricter instructions for how to leave clearer voicemails, and what to stress in their messages to patients. They were given new scripts to go over when leaving instructions. I’m glad it was "handled," but unfortunately that didn’t do anything to save my cycle from getting canceled, the day before I was scheduled to have my first frozen embryo transfer. It was, and still is, very upsetting to me that something so simple—communication—could get in the way of something so incredibly complicated and important. I'll probably never come to grips with it—it still leaves such a bitter taste in my mouth about this whole process.

I was told that this had never happened before—I was the first patient to have ever gotten a voicemail with the wrong instructions. The first infertility patient to have ever gotten crossed wires. Has something like this ever happened to you? 

I learned a huge lesson from it—I will never take instructions over a voicemail again, especially with something like this. I have since made it clear to the clinic that I don't want instructions left over voicemail, and that I want everything communicated to me in person or over the phone, with follow-up emails detailing the instructions. (It never hurts to keep it all documented.) I'd love to hear if you've had any similar experiences with medical procedures you've had done where you didn't receive the correct info, or clear enough communication.

On a much more positive note: Preston had his first day of preschool last week. Check out his first-day-of-school outfit, which my husband calls "dorky" but I call adorable! (So far so good—unlike our attempt at daycare last year, he loved it and actually wants to go back!)

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