24 January 2009

EFS, WTF?

I'm ok. Dumbstruck and dumbfounded, but ok. I do not have more news yet, I haven't connected with the doctor to hear the blood test results. I just left a message.

So, WTF?

You know, when we do this crazy thing called IVF, we think we know what to worry about. As an over-40 person, I knew the chance of success is low. At most 1 in 6. I also knew the chance of miscarriage is high, 40% or more. I knew I might not respond. I knew I might get only a few eggs if I did respond. I knew that only some of those eggs may fertilize. I knew that some or all of those fertilized eggs may not make it to transfer day. I knew that if some made it, maybe none of the transferred embryos might implant. I knew that if any did, it may not be in the right place. Or may not stick around. Or may turn out to be genetically abnormal.
So each of these scenarios, sucky SUCKY as they are, at least passed through my mind more than once as possible. But I had never heard of anyone gettting to retrieval and getting no eggs. Never.

Dr. Google says it is highly uncommon. A generic term is "empty follicle syndrome" (EFS) althought the jury is out about whether this is ever actually possible-- that they are ever truly empty. But it does not matter to me. No eggs aspirated = no eggs for IVF.

Apparently most of the instances of this syndrome can be traced to hCG not being either injected correctly, or at the right time, or having the batch somehow not be a good one, or that it clears from the system too fast or whatever. That is why they tested for hCG that day and kept asking if I had done the trigger shot. When?, how?, was I sure?. Folks, I am an engineer whose dreams were riding on this. I did the shot with the attention to detail one would expect -- I started early to make sure that little tablet truly dissolved but with no foam-- sucked evey last bit out of that vial. Injected in a known spot. Yes, there was a little blood when I took the needle out- but not enough for me to panic and think I had hit something major like a vein. I'd used that spot before and had chosen it since I knew it was a good spot for me. When we got home, I checked the bottle, checked the expiration date. Checked to make sure the bottle was truly empty. Not expired, yes empty.

So now I am totally curious about what my level was, how that happened, and how that will impact what we do next.


In the meantime, here at chez kate, once we got through that inital wave of grief, we've talked a lot and both feel we did not get a chance to truly see this option through. We both expected (!) we'd get to transfer and then, whatever happened happened. But since we did not get there, we are thinking about the possiblity of trying another cycle (maybe we can do better next time) which completely stuns me. Financially this sucks since really, I was only willing to go into this much debt (hands held about 2 ' apart) and of course a new cycle, even with donated medications, is going to be expensive. And the missed transfer etc. is such a small portion of the cost of the cycle that we prepaid, it is not as if we "saved" much money by skipping that.

In reality, Dr. M may say I'm done. He was completely shocked. He is "the guy" up at the clinic, the head honcho, and I have known him for more than 2 years and like him a lot. He is straightforward and non-bullshitty. Not a guy who'll blow sunshine up your, um, whatever. Anyway I trust him implicitly. I sure will be interested to see what he says.

Emotionally? This feels crazy. I felt so sad I could not breathe. Felt dreams crumbling away faster than I could gather up the pieces. I realized that even if I had gotten to transfer, even if the embryo or embryos did not stay, in that moment, I would be carrying (hosting?) dividing cells. I know this sounds insane, but I know, knowing that, that I would feel just a tiny little bit pregnant. And that somehow I was counting on that experience.

Now I feel kind of numb, kind of distant, kind of pragmatic. Just wanting to know to the best of our ability what the hell happened and what is suggested for a next step.

But I am already dreading hearing that I am done. I am not ready mourn the loss of this last option. I will if I have to, but I do not want to.


Thank you for your kind words. And for those of you stepping into this, or who are on the path behind me, do not panic. This is really, really rare.

7 comments:

alyssa said...

i have no special words other than i love you, this sucks ass, and that i knew in my heart that you'd likely try again. because i've known you for a hundred years.

t said...

i'm so sorry lady. this just sucks. i hope your doc has answers for you.

daves51 said...

Kate, the engineer is kicking in. Do the research, collect the data and solve the problem. I know you will.

Joannah said...

I hope you can try again. I'm so disappointed for you, and I wish there were better words to say. Please know that you have been in my prayers. I hope you are finding comfort in the ones who love you and in the beauty of the world around you.

I haven't been reading your blog for very long, so I may have missed the answer to my question before, but have you tried acupuncture? There are studies that show it increases success with IVF. My doctor highly recommended it for our upcoming cycle.

bb said...

Hi Kate. I am very sorry to hear your news and my heart goes out to you. I know there is nothing I can say to make it better right now, sure wish there was though! But hopefully with time you will heal and I do hope that you will be able to try again. Sounds like you have a great doctor who will guide you in the right direction.

Maredsous said...

Hey Kate,

Maybe we can time our cycles together again and have our babies on the same day. I mean if this rare thing can happen to two people within a day of each other, then we can probably get other things to happen simultaneously, too. For example, win the lottery? Right now, I would take a baby of my own over the lottery. Though I guess if I won the lottery I could go through endless numbers of IVF cycles.

To answer your question, I had one little eggie out of 6 follicles. It did not fertilize, but my guess is that it wasn't the appropriate stage. Like you I know I did the shot right, and I know that my 12 hour HCG levels were 269. That is exactly where they should be (maybe a tiny bit high).

I believe there is some explanation for all of this and I think we will also go another round. In the mean time, I think we are going to set up for DE. I really don't want to do that, but I think having a kid might be fun. And at least it will have my honeys superior genes, if not mine.

What IF? said...

Kate, I'm so sorry for your sad news. This just really sucks. I hope your doc has answers that will help to process what happened. I'm new to your blog, but wanted to let you know that you're blazing a trail, and how grateful I am to you.