September 18, 2010

Example A - Why I'm Too Tired For 'Big' (aka Post #250)

I had the consult with the reproductive immunologist this morning. It did not go well. I don't think it went particularly badly, either, but then again, at this point my judgment on those sorts of things is probably a bit askew.

I did my homework. I Googled, I read a lot of info online. This guy is with one of the most prominent RI groups in the country. He had great reviews on Yelp. (Let's not think about what it says about me that I'm now basing medical decisions - at least in part - on a community review website.) So when they asked me if I had a preference of doctors, I decided why not, everyone seems to love him, ask for him. So I did.

And it's not that I hate him. Or that I need to love the doctor I'm working with - at this point, I'm far beyond that. But I think that's part of the problem - at this point, I'm far beyond pretty much everything, and apparently it is all annoying me.

Let's start with the fact that the first thing he tells me is that the tests run in his lab, which account for 15 of the 37 vials of blood drawn recently, produced really bizarre results, and he thinks the vials may have been damaged by the heat while in transit. So, he has no confidence in half of my test results, and I need to have another 15 vials drawn (along with another 5 from R).

Then as he runs down the list of other tests, which were run at a national lab chain, he proceeds to mention that those kinds of labs generally aren't as sensitive at detecting this as some of the more specialized labs are. (What was making him say this is that in the past, through a more specialized lab, I've tested positive for APAs, but this time I didn't.)

So if he has zero confidence in 99% of the test results, why are we even having the appointment at this point? Not a great beginning.

It didn't exactly get better from there. The appointment can basically be summarized like this:
- Based on the current (screwy) lab results, he recommends 1 round of LIT. Depending on what the re-test shows, I may not need LIT.
- Based on the current (screwy) lab results, it doesn't look like I need Humira. Depending on what the re-test shows, I may need Humira.
- Based on the current (screwy) lab results and past (more confidence-inspiring) lab results, I need IVIg. Regardless of what the re-test shows, I need IVIg. But those tests will be re-done anyway, because the current (screwy) lab results don't provide a baseline that he is confident in.
- I need Lovenox. It should be half the dose I've been taking, once a day, until positive pregnancy test, at which point the other half of the dose I'm taking should be added in via a second shot each day. Hematologists don't know what they're talking about when it comes to using Lovenox in pregnant patients. (RI's opinion, not mine. It was RE who told me to go to a hematologist in the first place; it's not like I wanted to add yet one more doctor to the mix.)
- I need dexamethasone, pre-transfer and through the first trimester. This will save me from having to remind RE that he very reluctantly agreed to prescribe it for me. So there's one small silver lining. I had to get out the magnifying glass to find it, but it's there.

Here's how I thought the appointment was going to go:
- You need IVIg. (Check)
- You need LIT. (Probable check)
- You might need Humira. (Check, as in it's still "might" at this point)
- You need Lovenox, baby aspirin, folgard. (Check, check, check)
- You need dexamethasone pre-transfer and through the first trimester. (Check)

So part of what annoys me is I feel like he's not telling me anything I don't already know. And isn't that what a doctor is for in the first place? But then again, that's not entirely fair - he did say something about also testing my seratonin levels, because seratonin plays a role in uterine lining development. (Or something like that - I admit, at that point I wasn't really paying attention to what it does, I was just thinking "okay, make that 16 more vials of blood that need to be redrawn...")

Then I made the stupid mistake of asking what he thought our chances were. (70%) He looks at my age and says "Well, you're dealing with 36-year-old eggs..." (which were actually 34-year-old eggs when they were retrieved, thankyouverymuch) "...have you thought about donor egg?"

Seriously. SERIOUSLY? That just floored me. Not because it's shocking that a 36-year-old would get the donor egg speech, but because it goes back to some of the themes from my previous post. We were 28 when we started this. Back then, every RE's office we sat in, they looked at us and said "What are you doing here? You're still just babies!" I kid you not, we heard the word "babies" - meaning the two of us, not the kid we were trying to produce - many, many times. (Part of it is because R has always looked very young for his age.) And now, we've been in this hell for so long that we've gone from "you're just babies yourselves!" to "you may need donor eggs".

I just made some sort of noncommital sound and moved on to another question. Because if I don't have the energy for something like LIT, there's no way I'm going to muster up the stamina for donor eggs.


MrsSpock said...

Just reading that list makes me tired too!

Libby said...

I would be annoyed too. Super annoyed. I try not to take the DE speech too seriously. It's easier for them to say that than admit they never figured out a solid diagnosis when you were younger. Like you, when we started with an RE 4 years ago, age was never even discussed, but as soon as I turned 36, they basically gave up and suggested DE even though my day 3 labs and AMH are still good. So I guess I needed DE at 29 then? Whatever. My RI was quick to point out that DE doesn't work for everyone either. I'm just sorry you didn't get some solid answers out of all that blood letting! Sheesh! And I wish we all didn't have to keep shopping around REs and RIs for better answers. Just try to hang in there.

themrs said...

WOW...and this guy comes recommended??! What a nightmare to have someone tell you pretty much nothing more than you already knew. I am currently going through a confusing/trying time but I haven't had anyone say that kind of crap to me. I'm so sorry you have to deal with this. I hope the next time goes better or you find someone else!

Silver said...

Yikes - just reading about it all makes me feel tired too. On the donor egg front, one thing I would say is that it isn't just age that makes donor eggs make sense. Judging by our recent success (so far) with donor eggs and the age at which we started trying (and failing) with my own eggs, mine were NEVER going to work.

lastchanceivf said...

I just wish I could reach out and give you a real life hug. It's all so much, so much to take in, and to digest and then to top it off with the donor egg speech?? I'm sorry.

mara said...

That list makes me tired and super annoyed, too. That blood test mixup - when the results are like, the whole point of the consult, would have made me sort of homicidal.

And that sucks about the donor egg speech too. I'm sure you'd never have thought of that!

I base my opinions of doctors on yelp, too. And I left a not very nice review of my last OB there. :)