I've been putting off posting about this because I thought I should cool down first. I realized last week that I'm definitely in need of a new Ob/Gyn. My doc is a very nice albeit spacey lady who is probably just fine if you are a normal fertile person experiencing normal pregnancy, but OMFG ... it has become incredibly clear that I need to be dealing with someone who has some, er, experience in dealing with infertiles -- particularly older educated ain't-got-time-to-mess-around infertiles.
On the day of my miscarriage, the nurse assured me on the phone that the doctor would call me the next evening. Of course, that evening came and went without a phone call. And then 4 more days passed. Finally, the doc calls me at home during the workday. The Mister tells her I'm at work. She calls me there and, getting my voice mail, proceeds to leave a long rambling message. So sorry she hadn't called me, hopes I'm feeling better, so sorry for my loss, gosh it's nice that I feel well enough to go to work, and oh by the way, to answer the question I posed in the email almost three weeks ago which she has not yet answered, no, she doesn't think we should do any genetic testing on the miscarriage material.
Now, keep in mind that, per the nurse's instructions, I had taken my containers with poor little Sammy and god knows what else to the doctor's office the day after my miscarriage -- 4 days before this phone call. One would expect that if they were going to do any testing, they'd do it right away, yes? But the doc waits 4 days to leave me a message saying they're not going to do tests?!
Through tears of rage, I put on my pissed-off lawyer writing gear and sent her an absolutely scathing email demanding an explanation of this unconscionably bad behavior and an immediate report on what the fuck they made me bring everything in for if not for testing, and oh, by the way, they'd better do some more training on their nurses because I got a different story from every single one of them that I talked to as to what to do with the, um, stuff that came out of my body. And not one of them offered any advice about what I could expect afterwards, how long I might bleed, what activities I should abstain from, whether I should only use pads, etc., and since the doc didn't call when she was supposed to, this means I did not receive timely medical advice from anyone in her office, which is simply appalling. Of course, I already knew most of the "what happens afterwards" stuff thanks to Dr. Google, but fergodssake, shouldn't one's doctor's office provide this information voluntarily without you having to ask?! Or perhaps a pamphlet entitled "Sorry you're miscarrying -- here's what to expect"??
She called me back an hour or so later. Oh, as it turns out, they actually did try to do genetic testing (despite the fact that she told me in her voice mail that they weren't going to do any testing, which means she didn't even check on the status before she called me the first time!!!), but due to the necrotic state of the materials, they were unable to get any DNA to grow. Sorry. They did a visual check of the embryo and were able to rule out a few specific genetic disorders, but not all genetic disorders would show up in a visual check at this early stage. Sorry again.
I was so angry I couldn't see straight, which of course meant that I was busting a lung trying not to cry. "Now let's go back a few steps ... you used the word 'necrotic.' Please explain."
She was caught. The Mister thinks, and I agree, that she used that word hoping I wouldn't know what it meant and that I'd just ignore it as medical gobbledygook. But I got really high scores in my verbal SATs, and I know a synonym for "dead" when I hear one. And I had just read the first several chapters of this book, so I knew what should happen when they're performing genetic testing, and I know that there are more expensive testing methods (that this doctor's lab doesn't perform) that can improve the chances of determining if there were genetic problems, even if the genetic material won't respond to normal testing.
What she was trying to tell me without actually saying the words was that Sammy was too dead for her lab to determine why s/he died. (And of course they couldn't tell me what the gender was, not that I would have wanted to know anyway, but I guaran-damn-tee you she didn't know.)
"So if I'd brought it in the day of my miscarriage instead of the day after, would that have made a difference?" I asked. "Not necessarily," she said. "Once the heartbeat stops, things start to, um, decay. That's why we don't usually do testing unless there's been a D&C." In other words, if you want to know why your baby died, you have to let them immediately pry apart your cervix and scrape it out of your uterus (which, according to some things I've read, actually can mix up the baby's DNA with yours, thereby confusing the results, so no option is perfect). But at my doc's office, if you don't get a D&C, you'll never know. And because the nurses are all used to people having D&Cs and not used to people waiting to miscarry, when they get a phone call from someone saying they're miscarrying, they give the advice that they would give to someone who was spontaneously miscarrying, which is "bring in the materials." What they didn't consider was that poor little Sammy had been getting processed by my body in preparation for his/her eviction, and that "bringing in the materials" wouldn't do any of us any damn good.
I want a doctor who tells me shit like this in advance and whose nurses think things through before dispensing advice. And I want a doctor who doesn't wait 5 days after I've miscarried before checking in on me. And you know what? Because of my weird medical plan (Kaiser, ugh), in order for me to get these things, I may have to change my insurance carrier, which will mean paying a whole lot more out of pocket every month for my policy. And the icing on this miserable cake is that I can't do that for a year because my employer's open enrollment period just ended. So if I want a competent doctor, I'm going to have to pay full price out of pocket for them. Doesn't that just fracking figure?!
Sorry you're going through this. I dealt with the same thing at my last RE and decided to switch. My Dr. did tell me the same thing you are hearing though that getting a karaotype from a natural miscarriage is pretty tough because they can't get all the material. But you'd think they would have told you that up front!
Posted by: Allison | July 16, 2008 at 09:11 PM
oh, that totally fracking sucks. i'm so sorry you have to deal with those ignoramuses. it's so aggravating when you can't even get good care for a crappy issue. I hope you are already looking for a new office for a fresh start somewhere else.
that also blows about your insurance. many kaisers suck (I hear there are a few good ones but most are not). I switched from an hmo to ppo when I needed surgery so I pay more per month for a better plan. still no i/f coverage though. and all the plans try to pay as little as possible for everything now...
Posted by: luna | July 16, 2008 at 10:46 PM
This is just terrible. I would make a formal complaint to this doctor and your current insurance company. You've got the basis of a complaint in this post so you could just tweak it and send it. People won't learn unless you do complain. If nothing else, that doctor and their support staff will think twice before they dispense useless advice. The doctor might also pick up the phone a hell of a lot faster to check on a patient if they think that patient might make a formal complaint. It would be nice if you had a doctor who understood but we can't always expect that. Fear of a complaint is a great motivator.
Posted by: Almamay | July 17, 2008 at 12:44 AM
Incompetent doctors suck - there is no excuse for her waiting that amount of time to contact you. None. You deserve better medical attention, advice, information, etc... Start searching - you will feel better when you find a doctor who is on top of things! Sorry you are dealing with all of this!
Posted by: Sara Alvey | July 17, 2008 at 04:37 AM
I've been though similar circumstances with two of my previous miscarriages. In fact, I've had 5 m/c's and three different doctors either mucked up the testing or "forgot" to test the remains.
I know how insanely pissed off you are, and rightfully so. I'm sorry you have to deal with this.
Posted by: Shelli | July 17, 2008 at 05:10 AM
I have no idea what your going though, but GET A NEW DOCTOR, she sounds like an idiot.
I'm beginning to think that infertiles are smarter/more educated then the average fertile, as soon as I read Necrotic, I was like ooh, that's not good....
Sorry for your absolute cr*p experience.
Posted by: duck | July 17, 2008 at 06:56 AM
I'm really starting to wonder about this sub-field of medicine entirely ... I'm sorry you had to deal with all of this.
Posted by: Rachel | July 17, 2008 at 07:30 AM
R - I am so, so sorry that you had to have this experience with them, as if you haven't been through enough the past couple of weeks (months!) already.
I unfortunately have had some similar experiences with the wacky world of ob/gyn - one of them after one of my m/c that made me start shopping around for a better situation.
I hope you find someone you like, and someone who deserves your trust too. Still sending peaceful thoughts your way...
Posted by: Sherry | July 17, 2008 at 10:28 AM
I am equal measures sorry and indignant for you that you had to deal with this on top of everything else. I second Almamay's suggestion to complain, but I know it's just one more unfair demand on your time and energy when you need both for more important things. Keeping you all in my thoughts and heart.
Posted by: Aegina | July 17, 2008 at 04:13 PM
Talk about adding insult to injury! I'm also for complaining, if you have the strength and will to do so. I could also see the reasoning in just walking the fuck away from someone who has so completely failed you in your moment of real crisis.
My thoughts are with you.
Posted by: Shinejil | July 18, 2008 at 07:52 AM
Talk about adding insult to injury! I'm also for complaining, if you have the strength and will to do so. I could also see the reasoning in just walking the fuck away from someone who has so completely failed you in your moment of real crisis.
My thoughts are with you.
Posted by: Shinejil | July 18, 2008 at 07:53 AM
Oh my god, I would have gone off the deep end, too. If they weren't going to be able to test, why make you go through the collection and bringing it in? How awful is that? And you do have to wonder if waiting (and who knows if they waited with the material in the fridge for awhile) made it worse.
Anyway, I'm glad you went all lawyer on their asses.
Are you SURE you can't change to a new doctor without changing HMOs? That seems pretty draconian to me.
I'm feeling so bad for you. One of the hardest things about all of this is not just what fate does to us, but what the doctors, and asshole HMOs, and everyone else who's incompetent tend to do to make it worse.
I really hope the worst is behind you. Take care.
Posted by: the Babychaser | July 18, 2008 at 04:32 PM