Making lemonade

I'll say it again -- my new OB is fabulous. Turns out she's head of the department for this region of my HMO, which could explain some things.

I went for a follow-up appointment today. She said the D&C went really well but that she was glad she had had ultrasound techs in the operating room so that they could check to make sure she got everything. They did and she did. I'm officially over my m/c. And I do feel much better, by the way. In fact, I felt much better almost immediately after the procedure, except for the annoying bleeding, which has actually stopped for good. There was one last surge of clots weekend before last -- my body's final hurrah, I suppose. People, my people -- I basically bled from July 2 straight through August. That's a lot of winged pads.

My actual gyn appointment was over in about 5 minutes. We spent the next half hour going over miscarriage information documents that we had both brought to the "meeting." Yes, indeed, the Brochure Project lives! She is completely into it. I gave her my scribbled comments to the HMO's "standard" materials that Old Doc gave me. Her reaction to some of them was "What is this? Where did this come from? I didn't know we had this!" with much grumbling under her breath about the dysfunctionality of big organizations. My scribbled comments were mostly "Confusing. Not applicable to m/c after 6 weeks or so. Need more details."

Essentially, the problem with their standard documents (none of which I received before my m/c of course) is that (1) they're written by doctors so they're packed full of medical jargon or (2) they only hint at what happens when you miscarry or take an inducing medication like misoprostol or have a D&C, which means that (3) they do not give women enough information to make an informed decision. "You may bleed heavily" is not very helpful in a situation such as mine, when it looked and felt as though my body was vomiting blood. "You may experience nausea" doesn't include "and you'd damn well better have some anti-nausea medication in your house before you start miscarrying or you'll be very sorry." And nowhere -- absolutely nowhere -- do they give any practical advice like: "You may wish to sit on the toilet or squat in the tub while this is happening because it will be messier than your wildest dreams" or "You may wish to have another adult in the house in case you need to make a phone call or you pass out" or "You should plan ahead for child care if it is possible to plan ahead because you will be completely out of commission for several hours ..." 

They expect that women will ask their doctors for the details, but if you don't know what could happen or what your options are, it's very hard to ask questions that will give you the information you need. We also talked about the differences between early first trimester miscarriages and later ones like mine, and the additional information that women experiencing the latter type will need. I tried to raise her consciousness about women over 35 who have experienced infertility and their legitimate need to be given more information and have more information available about genetic testing options after a m/c because time is so precious. I'm not sure that I clearly made my point on that one, but I'll keep trying. I also mentioned the need to give patients plenty of time to make their decision, unless there is a medical need to hurry. She was 100% on board with that.

So we're working on it. She's going to draft up a document and send it to me for review. The document will be used by doctors whose patients are going through miscarriages and as a training document for the advice nurses. I may contact a few of you to lend another eye to the document when I get it. I'm not sure how many doctors and nurses will be receiving this document, but my sense is that it could change the way that miscarriages are handled at my HMO -- at least when they happen in this city or perhaps this region. And that is a powerful thing.

"At least some good is going to come from your horrible experience," she said. My thoughts exactly.

*** If I end this post here, I'm going to get a lot of comments saying "good for you," which is not why I wrote today. I'm going to end instead with a challenge to each of you. This may have started out as my experience, but it's become much more than that -- it's now about making sure that other women have a better experience than I did. New Doc talked with me about women whose (very understandable) response to loss is to withdraw and turn inwards. I had that choice and I could have taken that road, but it would have been a horrible waste of my time and a waste of a once-in-a-lifetime opportunity to make a difference. I'm not saying that everyone should respond to loss by becoming an activist. Not at all. But if any of you in the course of your everyday lives have the opportunity to challenge the status quo in your doctor's office, your community, or even your workplace, please think about doing so. One person can make a difference. And you don't have to be tough as nails or trained as a lawyer. Sometimes just one quiet shaky voice speaking up and saying "this isn't right" can be the catalyst for important change.

Comments

[luna]

kudos to you friend for making a difference. you are inspiring.

[Aegina]

Brava! And a good challenge for shy people like me -- I will take it to heart.

[Heather.PNR]

Can I switch to your OB-GYN?

Thanks for the good word and the challenge.

[Shelli]

I've learned this lesson recently, and have become a lot more outspoken and an advocate for my own care (which for many, is a really hard thing to do, but necessary). Being the poster child for SIF, I feel like I must keep the conversation going on the outside, because you never know who you might touch along the way.

Kudos to you for making a difference.

[Sherry]

You are completely right. Unfortunately, I can look back at my painful history and identify times when I could have stepped up and said something, but didn't. I have come a long way since then - and will most likely think of you and your challenge whenever something like that happens again. See - you're a role model!

[shinejil]

Since so few of us have any female support network filling us in on the gory, painful details of these experiences, it's necessary to put it in a brochure, frankly. Things your mom should have told you...

I think there should be one for ectopics, too! I'll get cracking on it, once I get through the experience...

[shinejil]

Since so few of us have any female support network filling us in on the gory, painful details of these experiences, it's necessary to put it in a brochure, frankly. Things your mom should have told you...

I think there should be one for ectopics, too! I'll get cracking on it, once I get through the experience...

[Renee]

Hi, have you seen this? It looks like the National Woman's Law Center is taking up your mission.

http://action.nwlc.org/site/PageServer?pagename=Ectopic_Pregnancy_and_Miscarriage_Survey

[Arpee]

Hi,

I'm checking out my fellow 35+ IF'ers in Mel's (Stirrup) list and found you. I'm sorry you lost your baby. (But it is so good to hear about being able to conceive naturally at your age!)

Doctors nowadays are so task-oriented that they spend only as much time as they need to with you. It does not foster a lot of thoughtful conversations. Of course, if the patient was a willing sheep who has not researched her condition, she may not even think about asking for more information.

The internet has been a great resource for me to educate myself about IF and also other women's experience. It has armed me on what to expect and what to ask.

Anyway, I wish you well on your next steps!