From my RE, that is.
WTF appointment was held via phone conference this morning with Dr. Down-to-Earth. I definitely did not expect to hear what I heard. I had typed up a list of questions and was raring to go. He disarmed me early by asking how I was (better today, thank you) and then how Mo was holding up. That's always what gets me -- I am fine, but when I have to talk about how sad or disappointed my husband is, I lose it.
So, after pulling myself together, we started talking about the Next Steps. He said that there's really nothing to do besides another fresh transfer, but that he didn't really feel comfortable moving forward at this point.
Huh?
He had me Google Dr. Expert at a fertility clinic in a nearby Big City. Dr. Expert is supposedly very adept at handling RPL and repeated IVF failures -- Dr. Down to Earth referred to him as one of the top 3 in the country. His website is not much to look at, but I started poking around and found some interesting articles to show Mo. Basically, Dr. D. wants me to have a consult with Dr. E. before moving forward. Usually this is a phone consult, but since Dr. E. is close to me (2 hours vs 6 for our clinic now), he thinks I should go ahead and book a new patient appointment next month. Then, Dr. E. can go ahead and knock out any further testing he might recommend while we're there. He will send a summary of the results to Dr. D, and then Mo and I can decide whether or not to move forward. Or, not.
It's the "or not" that's getting me. Dr. D. said that everything looks great on paper. Excellent stimming results, Mo's counts were decent, embryos looked great. Sure, we could do PGD next time if we decide to go that route. Yes, I should definitely have a saline sonogram to check for scar tissue before our next transfer. But beyond that? Dr. D. didn't have any suggestions.
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So why the "or not?" Does he really think we're wasting our time here? Is he dropping me because he doesn't think he can help us -- and doesn't want to drop his stats? I really hope not -- but looking at the difference in statistics between Dr. D. and Dr. E. was sobering. Their pregnancy rates per cycle differ by nearly 20% (60.9% vs 39.7%), and their live birth rates by 15%( 60.3% of transfers result in live births at my current clinic, just 43.5% do at Dr. Expert's.)
What confuses me the most is (according to the SART reports online), this new clinic's success rates have dropped considerably in the last few years. In 2008, they were close to that of my current clinic's. Now, they are much lower. Is it because they are taking on more difficult cases? Or are they just not as good as Dr. D.?
I hate not having answers. Talking to Dr. D. made me feel like this new guy could help us find some answers -- but then, as I research them more, I just find myself getting more and more discouraged.
I'm so tired of running this race, especially when the finish line keeps getting moved on me. I want to keep charging forward, but I've lost sight of where I'm headed. I want to be a mom more than anything -- but I'm really starting to lose hope that this will ever be the case.
Friday, March 23, 2012
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UHHH...so bloody hard to figure out what to do. It sounds like the new guy does get the difficult cases, I take my hat off to any doctor who would do that- most of them are pretty involved with the numbers. I'm starting to think that is not the important part, every RE does more or less the same thing, what sets a good doctor apart from a bad one are the little details- how aggressive they get with testing and treating, and more importantly, willingness to care for a patient, to see them as more than a face in a parade or a statistic.
ReplyDeleteHope the new guy can shed some new light on the issue in trying the same again, but--- how do you feel on switching paths to get to the end goal? Donor egg/embryo or surrogacy???
I've given a lot of thought to what I'd do if my eggs/uterus combination was not working, its very, very hard to figure the path forward. Its so easy (and yet, so very hard) to keep doing the same thing again while hoping for different results :-(
I specifically asked Dr. D. if he thought it was time to move onto that. He doesn't think there is any reason (that we know of) to consider a surrogate, donor eggs, or even donor sperm. I am still "young" in the IF world (31 in May), and my egg quality seems to be fine. He said that while we do have male factor, that the ICSI pregnancy rates are no different than those that don't have male factor (in other words, it's not an issue).
DeleteThe bottom line, though, is that surrogacy is beyond our financial means, and donor eggs would be stretching it, particularly since he doesn't think that's the issue. We will see what Dr. E. thinks, though, before making a decision.
I think it is always better to have more information. I would def get the consult with someone new. You never know what could turn up! Good luck!
ReplyDeleteMy biggest concern is that I've already had all the structural tests done and an RPL panel and the chromosome testing. I suppose he could re-run those tests, but I'm curious just what he's looking for that we haven't already considered, you know? And I've been asking for all of these tests since our 2nd loss. If they weren't done -- well, why not?
DeleteSomething autoimmune, maybe?
DeleteI'm with HRF. The more information the better. One thing that could be affecting the stats is the patients Dr. E sees. These may not be ordinary IF cases, so that may drop the numbers. Either way, the best way to find out is to ask.
ReplyDeleteI think Dr. D referring you to Dr. E is a good thing. If Dr. E is an expert, he may have seen cases that Dr. D hasn't, meaning he has a better idea of how to treat. At any rate, a second opinion is always good.
Hoping the consult goes well and thinking of you as you and Mo continue to heal.
I am trying to see the referral as a good thing, and not as if I'm being dropped as a hopeless case. I think I'm still a little emotional, though. I DO want answers, so maybe he can give us some insight that has somehow been overlooked?
DeleteI think getting a second opinion is a great idea! And regarding Dr. E's success rates, I think the super-experts in the field always have worse rates because they take on or are referred the more difficult cases, not that they're any worse. I hope this next consult goes well - try to look forward to hearing more ideas and information!
ReplyDeleteThat's kind of what I'm hoping....but it's hard to look objectively at those numbers and say, "Let's go with the guy with the lower success rates." You know?
DeleteDr E's clinic should be able to give you a break down of the numbers. Chances are his success rate is low because most of his patients are in a higher age range, which has a lower expected success rate to begin with. For example, my clinic had a live birth rate of 57% in the 30-35 age range, but a 28% live birth rate in the 40 and above range. That is a really good number, but if all of their clients were over 40, it would look kind of scary.
ReplyDeleteI hope that you get some answers on how you can move forward. You have a lot of options, it is making yourself see the best choice when you are tired of looking that's the hardest part.
I've been comparing them using the SART resource, so the breakdown is pretty specific. That 38% pregnancy rate is for under 35, which seems awfully low to me (isn't that lower than the national average?) The over 40 stats were even worse -- less than 10%. (Side note -- I love the sart resource b/c you can look at specific diagnoses and compare those also.) So, no matter how you look at it, it's kind of scary.
DeleteThe good part is that these guys work together, so to speak. Dr. E. can do my consult and evaluation, but I can still use Dr. D. for the cycle, if we decide to do that. And he will follow whatever Dr. E recommends for us. So maybe the best of both worlds?
I can see how that meeting was a downer. *hugs* I do agree with others that it's always worth talking to experts. At a minimum, you'll get reassurance that your existing approach and protocols are the right ones, and at best, you'll get insight on a different way to do things. I'm glad the two docs can work together.
ReplyDelete*hugs*
I am too. After dealing with the local clinic and realizing that they refuse to work with other docs, I really didn't want to go THERE. And I'm glad to see that just because THEY are a bunch of money grubbers, that isn't the case with ALL RE's. :-)
DeleteUgh...it's really not what you want or need to hear when you have just picked up the pieces (again) enough to have all of your questions ready for how to move forward. Maybe this is a good thing, maybe the new doc will have some good insight or a different perspective. I hope, really hope, that the statistics are are because New Doc takes more difficult cases. *hugs*
ReplyDeleteSince this going to be our 4th RE, I really do hope he will have some answers. And I plan on specifically asking Dr. E. what's up with the falling stats. :-)
DeleteI know it all seems pretty confusing right now, but I also vote for at least talking to the new doc and trying to get your questions answered face to face. Once you've done that, you can decide where to go from there. I know you and Mo will figure this out.
ReplyDeleteThank you. I know we will, too, eventually. It's just the waiting game that I am so very, very sick of. :-)
DeleteFinally online, and I'm so upset this wasn't The One Magic Transfer. I hope that despite the lower success rates, Dr. E can give you some tests and real answers. You've been through way too much. (((hugs)))
ReplyDeleteThanks, manapan. I had hoped so, too. Maybe transfer #5 will be my lucky one? We will see.....
DeleteNo, Kristin, I haven't heard of them, but I will definitely check them out! Thanks!
ReplyDeleteHi from ICLW! I think going to an expert is worth it just for a fresh set of eyes. Good luck!
ReplyDeleteHi back atcha! Thanks for visiting. I read your book review and loved it! I've added you to my reader and wish you the best of luck with this next cycle. I hope it brings you some answers as well!
DeleteI'm sorry that things are so hard right now!
ReplyDeleteHi. New here from ICLW. I'm sorry about the difficult phone appointment but I do want to echo the comments that the more information and the more sets of eyes reviewing your file the better. And I would totally feel like I was getting fired too but I think it is actually really good of a doctor to recognize when he could use a second opinion. Wishing the best for you and Mo!
ReplyDeleteI am trying to remember that wanting a second opinion doesn't mean he doesn't want to treat me, it just means he wants to do what's best. Right? :-) Wishing you luck on your upcoming FET!
Deletei wish i had some amazing answer for you Jo, that brought you the magickal golden ticket but i don't. i do think that the more people who look at your case, maybe another set of eyes will see something your current RE hasn't?
ReplyDeleteas always, hoping for that miracle for you!
~x~
Thanks, stinkbomb. I wish that there was a magic answer, too. I think you are right about more sets of eyes, and that's how I need to view this.
DeleteHi from ICLW!
ReplyDeleteI'm so sorry that your dealing with all this. As if IF isn't bad enough, its crazy that he seems to be dismissing you! It's just not right or fair. Big hugs coming your way.