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Not a moment too soon - Elizabeth Unexplained
Lots of data but no answers
greyautumnrain
greyautumnrain
Not a moment too soon
I went it to have my first ever ultrasound of the ovaries today. It was a much better experience than I was expecting given where they were putting the wand. The woman doing it was very good and very nice, which I'm sure helped a great deal.

The big news is that I have one follicle that's measuring 21mm and another measuring 18mm. To those of you who aren't obsessive readers of infertility blogs that means I'm ready to pop. I need to inject myself tonight, then tomorrow and the next day we do the inseminations. That's sooner than I was expecting. I was expecting. The way the literature reads you go in every two days until you have a follicle that is 16mm. That makes it sound like it could be a few iterations. I'm pleased to only have to do one ultrasound; getting from work to Kenmore and back is a pain. I'm also a little caught off guard by it being so immediate, but sooner is certainly better.

Of course that means I needed to get the trigger shot from the pharmacy right away. Work recently changed our perscription drug provider to Medco. I didn't have my card last week and payed for the Clomid out of my own pocket. Given that the Clomid was $20 and my co-pay on perscriptions is $15 that wasn't such a big deal. The shot and the progesterone gel are much pricier. This time I was armed with my card. Alas, the in-house Harvard-Vanguard pharmacy doesn't take Medco. I had to get hard copies of the perscriptions signed, and then I needed to find a pharmacy that did take Medco and stocked the stuff. This isn't the sort of thing CVS routinely carries. I was lucky that the folks in the fertility clinic were really helpful. They directed me to a pharmacy that specialized in fertility medications and they called Medco to make sure they wouldn't give me a hassle about covering it.

So, mostly good news. The extra hour it took me getting fertility meds was a bit of a hassle, and I have the urge to write a nasty note to HR about the change in medical coverage, but otherwise everything went well.

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Current Mood: cheerful cheerful

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Comments
mijven From: mijven Date: January 17th, 2006 12:36 pm (UTC) (Link)

Okay, it's been awhile since I worried about such things (and I never had to go the clomid route) but you're almost at day 14 of your cycle, right? Isn't that the "normal" time? (I.e. based on the 28-day schedule that doctors thought all women subscribed to.) I'm just wondering if SOP is to come back ~one week after starting the clomid and whether that gets modified for people who have shorter cycles? (Or is taking blood samples over the course of a cycle something the doctors would want observe for themselves on folks who hadn't been charting?)

Feel free to ignore the technical question above, and just accept my "yeahs!"
greyautumnrain From: greyautumnrain Date: January 17th, 2006 01:00 pm (UTC) (Link)
Yes, standard procedure is to go back a week after you start the Clomid. I started on CD5, so this is 8 days later. I'm assuming they wanted to not do any patients they didn't have to on MLK day. I was just a little caught off guard to have a 21mm follicle at the very first ultrasound. Maybe I've just read two many blogs by women who have a problem ovulating. Based on my charting I most often ovulate around CD17, but CD14 certainly isn't unheard of.
coraline From: coraline Date: January 17th, 2006 01:04 pm (UTC) (Link)
so my cousin has been dealing with medically-unexplained infertility for several years now, and has been through N cycles of IVF etc., and recently discovered something very interesting which can cause infertility. there are a few places doing research on it, but the treatment for it isn't available in the US (they're going over the border into mexico) but the biology (i haven't done extensive research yet) to my very cursory inspection and biological intuition makes sense.

let me know if you're interested in hearing more or if i should just stay out (i really never know what i should say in this sort of situation, since it's obviously touchy, but it seems like information i should share if you want it...)
greyautumnrain From: greyautumnrain Date: January 17th, 2006 01:19 pm (UTC) (Link)
I certainly be interested in hearing about it. Of course, I'm hoping that IUI will work for me, but you never know if the information might come in handy.

Don't worry about what you say on the subject, especially if its concerning the biology. I have no issues with biology. As long as you don't tell me, 'just relax and it will happen,' I won't get upset. I mainly do the friends-lock and behind a cut thing because I feel the universe in general doesn't need to hear about my eggs, and maybe some of my friends don't want to hear the gory details of me being intimate with an ultrasound wand.
coraline From: coraline Date: January 17th, 2006 03:10 pm (UTC) (Link)
ok, this is from my cousin simplykimberly's livejournal, copy&pasted with her permission. she says you should contact her with whatever questions you might have.

----

The tests that were done are NOT tests that are usually done for people with fertility issues. In fact, they are not yet considered standard practice by many reproductive facilities/doctors. The doctor we went to has been pioneering both the tests, and treatments, having to do with reproductive immunology for the last 30 years.

Part of not writing about this before was mostly just wrapping my head around some biology that I don't entirely understand. I'm very unaccustomed to that. Ask me about FSH, or LH, or estrogen, or other hormones, and how they affect follicle production, or anything else in the female reproductive cycle, and I can practically give you a dissertation about it. But this stuff ... it's new territory beyond my basic understanding of the biology of the immune system. Several folks have asked me, during the week, about it, and in talking it out I think I've got my head somewhat wrapped around it. Enough to type out a laymen's description, anyway.

We got tested in five categories - both of us - and they found either small or large problems in all five. Several of the problems are similar enough that the treatments are the same. They tested not just our blood, but our DNA. They pull out our "DQ Alpha" numbers from our DNA. A common problem that couples with "unexplained infertility" have is that they have DNA which is too similar to one another. This is a problem because it is the male's DNA which helps differentiate the fetus from the mother, and starts the whole process of building a placenta, and an amniotic sac in order to separate the mother and the fetus. If the male and female DNA are too similar, then the fetus won't be different enough from the mother to trigger the magic that happens in the uterus when it gets recognized as 'other' and so on.

So we get two numbers each. And our first numbers are identical. They are both 0103. Fortunately, our second numbers are different. However, MY second number is one of those good news/bad news things... It's an indicator that I have an extremely good immune system. That, along with the tests they did on/for my "natural killer cells" indicates that those cells, which are especially honed to dealing with cancer, are spotting those rapidly dividing fetus cells, which are NOT getting quickly protected by a placenta, etc. and doing their proper job and killing them off before they "metastasize".

So basically it comes down to the fact that Aidon and I are having trouble procreating because we're TOO compatible, and I'm TOO healthy. Oy vey.


In fact, as it turns out, we're so "compatible" that some of the OTHER numbers for other tests showed the doctor that I have been pregnant, specifically by Aidon, frequently.

I'll say that again, because it caused us both to take pause, and my eyes to well up.

I have been pregnant, specifically by Aidon, frequently.



Y'know, the old fashioned way.

So ... yeah.

(continued in next comment)
coraline From: coraline Date: January 17th, 2006 03:11 pm (UTC) (Link)
Anyway, the treatment for this is called "Lymphocyte Immune Therapy" (LIT). Basically they take out some of Aidon's blood, pull out a couple of specific types of lymphocytes, do something to them, and then inject them into me, in my forearms, like skin allergy shots. I will get red and blotchy and itchy (whee!) and that's good, because we're trying to make me allergic to him a bit. We're trying to make my body realize that his DNA is foreign.

For a variety of reasons, the FDA does not currently authorize this treatment, in this country, for this purpose. So we're going to Mexico (JUST over the border) to get it done in a few weeks.

All of the news was really pretty good and/or encouraging. He started the conversation by giving us his email address, and telling us that when I'm pregnant, he'll give us his cell phone number, too, in case we want to call him. His statistics, for women in my age group are astonishing. 50% of the women my age got pregnant the VERY next cycle after treatment (that's our memory of what he showed us - that could be slightly different, like the first cycle they tried, or something - but it was over 50%, and it was soon after treatment.)

We'll do the LIT, and we'll get tested again to see where we are, and what else still needs doing.

There are a few other things, and treatments, and at least one of them makes me a bit uncomfortable, but I have some time to sit with it and still don't know if it'll be required.

We don't know yet whether we'll need to go back to IVF, etc. There's a reasonably good chance that if this fixes the issues we've been having, that we won't. There is no mechanical or biological reason for us to require assisted conception. I just, apparently, may need to be immunized against my husband. Wacky!

So anyway, that's the scoop on that! It's really the first time we've felt any significantly large hope since the last IVF. We always hope, of course, but it's kind of waring, over time to keep failing at something we want so much. Well, apparently failing, anyway. Seems we weren't QUITE as unsuccessful as we thought - although that has its own pangs, too, for sure.

I can probably answer questions if you have any, I have a whole booklet on all the different stuff and am starting to understand some of it better as I read and reread it all. It's pretty interesting stuff (if you like stuff like that, I guess, which I do.) And yes, it's incredible news, and we are still wrapping our heads around it.

It's been a hell of a week, I tell ya!


Addendum: The doctor who did these tests has offices in Los Gatos, Chicago, and London, UK. He has found some amazing stuff out, and has some pretty amazing results. But without wider spread research, you get an awful lot of conflicting information about this stuff from other doctors. Anything from "it's really promising, I hope more research is done to prove it/make it more common" to "well, there's only a limited amount of research done, so it's not proven yet, therefore you shouldn't spend your money and heartaches on that (subtext: keep spending it on us)"

Anyway, we've decided to ignore the nay-sayers, and would appreciate not hearing anything in that realm at this point. We've done enough research to make us comfortable with that opinion, and it's where we want to spend our energy.
enugent From: enugent Date: January 17th, 2006 08:49 pm (UTC) (Link)
This is [i]really[/i] interesting! Has your cousin had the treatment yet, and if so, how did it go?
coraline From: coraline Date: January 18th, 2006 06:21 am (UTC) (Link)
no, she only just found out about this last week or so. she's happy to talk about it with whoever, so feel free to drop her a line in her livejournal if you want to know more (or find out when she's had any treatments...)
greyautumnrain From: greyautumnrain Date: January 18th, 2006 11:04 am (UTC) (Link)
That's very interesting. Its probably not applicable to us, though. I doubt that Warren and I are "too compatable". There's the small matter of him being half Chinese.

Actually, if there is anything to be concerned on that front about, I'd worry more about my blood type. I'm A-, and Warren is A+. I'd be more concerned about my antibodies on the rh front than anything else, but that's not usually an issue until you have an actual fetus.
coraline From: coraline Date: January 18th, 2006 01:30 pm (UTC) (Link)
yeah, i didn't think it was necessarily applicable (though my cousin doesn't have terribly similar heritage to her husband, it's clsoer than half-chinese. but stranger things have happened.)
but i thought at the very least it was an interesting thing that more people should know about -- you may run into someone else who should hear that info sometime.
remcat From: remcat Date: January 17th, 2006 01:46 pm (UTC) (Link)
I'm curious too -- just on general principle.

Elizabeth -- good luck with this bit of the cycle. You sound pretty calm and collected about the shots. Thinking ahead ... have you confirmed that you have a source for the progesterone phase of things? I ask because with Eli, I had to special-order from WI (!), but with Julian I found a pharmacy in Andover that would make up the suppositories for me.
greyautumnrain From: greyautumnrain Date: January 17th, 2006 02:34 pm (UTC) (Link)
Yep, I have the progesterone gel too. I got it at the same place as the shot. I was just obsessed about the shot because I need it tonight, whilst the gel I won't start using until Friday.

The nice folks at the fertility clinic directed me the The Village Pharmacy, which specializes in fertility medications. You could kind of tell by looking at the over the counter stuff on the shelves. You don't often see so much Preseed prominently displayed.
enugent From: enugent Date: January 17th, 2006 08:46 pm (UTC) (Link)
[q] Yep, I have the progesterone gel too. I got it at the same place as the shot. [/q]
That one took me a minute, given the previous discussion of how the progesterone would be administered. :)

Good luck! Tom and I are really excited for you guys for this to work.
greyautumnrain From: greyautumnrain Date: January 18th, 2006 11:05 am (UTC) (Link)
Oh, yeah. I purchased it at the same place as the trigger shot.
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