Sunday, January 18, 2009

scary yet educational story

I know I've told a bunch of you about how my old RE didn't really help us much. I don't like to pick on them too much because I really love his office and I know that he really does help a lot of people. Not to mention, they have been generous with me regarding discounted cycles, etc. However, some of you have voiced surprise at how 'all over the place' he is or at the fact that he put me on strange medicine protocols and wouldn't listen to my pleas for a long lupron cycle or, even better, how he absolutely refuses to grade embryos. But, here is a short example.

I have a friend here who is in treatment with my old RE. She has had a couple of failed cycles with no explanation from him (keep in mind, these are out of pocket cycles). So, after her last failure she insisted on the WTF? conversation with him about what really went wrong and what they can change to have a better outcome. Well, she and I talked and she asked about some of the steroids I had been put on at CCRM and my protocols and how I had a much better outcome (sort-of). She then researched the use of one of the steroids and went in to talk to my old RE about it. She brought it up and he said he'd absolutely be willing to try it, asked her what dosage she thought he should give her, wrote a prescription and handed it to her and told her to start it immediately. Even though she doesn't know exactly when she will be starting a cycle.

He did something similar to me. He doesn't research the use of the medicine so much, just throws a bunch of stuff at you and you do it. You don't take it in the right way, at the right time, and you don't succeed often. Of course, I get ticked at this from her standpoint, but I did this kind of thing without even asking. I took 2 weeks of prednisone the month before my IVF cycle, once I even did IVIG even though my immune testing came back normal because he said he's seen success with it. I think this is just one of those instances where you yourself become the RE, you do the research, and you get them to put you on the protocol you think will be best. Isn't this kind of scary?

Anyway, just a story to say that sometimes you really do need to be your own advocate and sometimes a second opinion is definitely in order. (oh, and sometimes it takes some of us about 5 cycles to figure this out. ouch)

7 comments:

JJ said...

You're right, it's very scary how abitrary things sometimes seem with IVF or any infertility treatments, for that matter. Wow, this is a particularly scary example. I'm glad you changed away from that clinic. I had some worrying things happen at my local clinic too, even though they're known to be good and my RE himself is great. Once during my first (and last) Clomid cycle I was put on progesterone by my nurse without them checking that I'd ovulated, which I hadn't, and that messed me up so much that I didn't ovulate again until two months later. I've learnt that you have to watch everything like a hawk and know your stuff. No-one cares as much about getting you pregnant than you do yourself, and I live by that now. I do find it hard to do that without becoming a PITA patient, but I'd rather be that than not pregnant because of a mistake someone made.

DAVs said...

That seems really bizarre to me. I work in healthcare and I can't imagine putting someone on something just because they asked...without at least doing research myself. And asking the patient the dosage?? That is wacky.

I'm glad you're not working with them anymore!

Jill M. said...

My local clinic is similar in that way. They suggested the protocol, but in the end, I got to pick the protocol, meds and doses. It put a ton of stress on me because I had to do all this research to make sure I was making the right decision. I guess even they think this is all a crap shoot.

MamaSoon said...

That was a very disturbing story. He seems like a bad doctor and very scary. I find this really shocking. Seems like it would be the kind of thing you'd report.

Sky said...

Tell your friend to lace up her sneakers and RUN as fast away from that clinic as she can.

They're nice? Who cares? They've given discounted cycles? Big deal if inadequacy means even the discounted rate is a waste.

I'm with CCRM and I believe wholeheartedly in being in a partnership with your doctor over your care - we must be an integral part of our healthcare, ALWAYS! But the day Dr. Surrey asks ME what dosage I think he should put me on for a protocol I think I should be on is the day we part ways.

Lost in Space said...

Wow, what a frustrating way to go through this. I like to think I have an armchair RE degree, but I don't get paid the big bucks to make any real decisions. (-; I do think alot of this is hand-waving anyway, but this seems a little extreme.

I'm sorry you had to deal with this too. Hugs.

kelliejenks said...

Hi Sue- I just wanted to let you know that I'm following your stories and thinking about you and rooting for you. Good luck this cycle.

Kellie from Houston