Quicky.

Still muddling through with DH… still in counseling… having some minor breakthroughs, which give hope. Looks like the plan for now anyway is to keep muddling through and trying… at least through his first “heavy” year of nursing school (i.e. at least through maybe summer 2015.)

AND, he’s willing to do the gestational carrier thing again, and be a coparent if nothing else… for a while he’d been insisting even that was off the table and he wanted to destroy the embryos. So that openness and willingness has warmed my heart and I even catch myself getting excited, again… which I kinda hate, because we all know hope kinda sucks, too….

Gosh, you so nice…

I shouldn’t ever be surprised any more at how nice, and generous, and kind the infertility community is… heartbreaking when you not only wish your body worked for yourself, but also so you could help someone else!  And so many lovely ladies have written telling me they would GC for me if only they could.  And it means the world to me.  Thank you SO MUCH.

One tiny peep of irritation… so many people are pregnant.  People for whom I am DELIRIOUSLY happy (like my friend Katie who got prego on her third IVF and Pam who had to go the DE route and is 33 weeks) and people I don’t even know (like every.single.frickin.woman.in.the.grocery.store.ever. And in the elevator.  And the post office. And.. and.. and..)

That’s okay.  Rocky times at home, arguments, mostly my fault, mostly having nothing to do with infertility.  Super pressured at work.  Lots of deaths in our family.  Money issues.  I think we’d divorce if we weren’t so upside down on the house, if it wouldn’t upset his family, if we hadn’t already put in nine years and we’d resent thinking it was a waste.  So not a good time to have a baby, anyway.  He even says “even if we don’t get divorced, we shouldn’t have a baby.”  So frustrating.

Thanks for listening ladies.

Soooo… long time no see.. here’s the update..

I got nothin’ for ya.

I’m hoping we’ll somehow luck into a gestational carrier that doesn’t cost $60-80k (i.e. one not a stranger through an agency.) We’re happy to pay her, and thank goodness Texas is a very progressive state for GC arrangements. But otherwise, it’s not happening. We have two embryos left on ice, I’m 41, and there’s nothing left to try to quell my insane inflammation besides IVIg, and that on top of the neupogen and everything else is just probably too expensive for too small a hope that it might work. I’d rather put them into a healthy uterus.

Or… maybe just be the cool aunt.

I’m working my brain around that.

I love you… thanks for reading.

lost it.

Thursday beta 34. Today’s, 9.

Uhhhhh…. I’m pregnant?

Uhhh… so get this.

I turned 41 in August. My immune panel just came back a week ago as HORRIBLE, WORST EVER, YOUR BODY IS A FIERY INFERNO READY TO INCINERATE EMBRYOS.

My cycles have been HAYWIRE since the miscarriage in May.

For WHATEVER reason, random out of the blue wild hair, I just decided to take an OPK the day I left to join my husband at his parents’ house. It looked pretty close to positive.

The next day, I did another OPK and it looked positiveish, so, we did our business the next morning.

ONCE in the fertile window, IF the OPK was right. I wasn’t temping so no clue if I really ovulated.

I have a 10 day luteal period. I lost track of the days because WHO THE FUCK CARES when you know you can’t get pregnant anyway.

Last night was 11dpo. No period, so I had to actually renew my Fertility Friend membership so I could tell if I should be expecting it soon (I’m going to visit a friend next week and want to be prepared for AF). And yeah, so what the hell, I’ll take a hpt, why not? I can handle YET ANOTHER NEGATIVE. Took one test, poured out the pee. FREAKED. Put two more tests in the tiny bit left in the cup.

Then this morning:

I had a beta drawn at 8am and I’ll update with results. On Dr. Braverman’s orders, I did 40 mg lovenox last night, 20 mg prednisone this morning, another lovenox this morning, 2cc PIO after my beta/progesterone was drawn, and I’ll do another 20 mg prednisone tonight. And if the beta is reasonable, IVIg asap.

EDIT: beta 34, progesterone 2.8. Another beta Saturday. Not optimistic.

BUT THAT’S CRAZY BECAUSE WTF WTF WTF WTF of course I can’t be pregnant. And especially not stay pregnant.

OK– new blood test results and maybe, maybe, hope.

So… counseling is going well… no firm answers or conclusions yet but we’re making some progress.  And hubby has retrieved the TTC project from the back burner and proposed a FET in November.  To which end, we plunked down another $500 or so for a new immune monitoring panel a la Reprosource/Dr. B.  And…. drumroll… here’s the results report:  [spoiler alert: it ain’t good.]

“Ok so all of your IC (intracellular) cytokine ratios are elevated (greater than the 90^th percentile compared to all in our practice) .  Although you don’t have a typical HLA haplotype c/w with an autoimmune etiology for this , we did notice that you are homozygous for a rare HLA B 51 and your husband even has a copy , typically seen in the middle east (Turkey) and associated with an autoimmune vasculitis. We can’t prove it but have to consider with the elevations in your levels that there is some autoimmune component. Regardless the treatment is still strictly anti-inflammatory  i.e. . prednisone / IVIG/ and even yes Humira (your TNF levels are very high even in the serum.) Of course we have to also go back to diet and cutting out Gluten /Dairy products and I think going organic is important ( I know its extreme but patients with these levels are so sensitive to allergens I think the diet modification is important.  But I think treating and repeating testing before starting would be valuable with these levels.

 See results below.

 

• 8-22-13

• • IC ratios
    • All ratios elevated (most of them very elevated) with the exception of TNF:IL-4 in CD8+ and CD4+ T cells, and IFN:IL-4 in NK cells (and even these are borderline elevated)
  • NKa
    • 50:1 = 6.6 (low)
    • 25:1 = 3.9 (low)
  • T-RIP
    • NK cells
      • Elevated total NK cells (CD3-/56+)
      • Elevated CD16+ NK cells (CD3-/56+/16+)
      • Low CD16- NK cells (CD3-/56+/16-)
    • NKT cells
      • Very elevated CD4+ NKT cells (CD3+/4+/8-/56+)
      • Low CD8+ NKT cells (CD3+/4-/8+/56+)
      • Low CD4-CD8- NKT cells (CD3+/4-/8-/56+)
    • T cells
      • Very elevated CD4+ T cells (CD3+/4+)
      • Very low CD8+ T cells (CD3+/8+)
      • Low activated T cells (CD3+/HLA-DR+)
      • Elevated Tregs = 6.6
    • B cells 
      • Low CD5+ B cells (CD19+/5+)
  • CBC
    • Low WBCs (3.9)
  • Serum cytokines
    • Significantly elevated G-CSF (877.8)
    • Elevated GM-CSF (53.5)
    • Significantly elevated TNFa (21.4)
    • Elevated IFNy (52.1)
    • Elevated IP gamma induced protein 10 (491.8)
    • Elevated IL-1Ra (263.0)
    • Elevated IL-12, p70 form (27.7)
    • Elevated macrophage-derived chemokine (2510.0)
    • Elevated VEGF (1555.0)
    • Elevated IFNa2 (90.2)
    • Elevated FGF-2 (629.1)
    • Elevated Flt-3 (122.9)
    • Elevated fractalkine (222.0)
    • Elevated MIP1b (61.6)”

So… shocker… the cost of the estimated amount of IVIg I’ll need to get through first trimester, assuming insurance won’t cover (and I pretty much guarantee it won’t) is about $16k.  Oh, and the Humira, hopefully, I get nearly free from Abbott Labs because my insurance refuses to cover it and they consider me uninsured as a result.

Second shocker… a friend in my office, who is 36 with a gorgeous 7 yr old son and no plans for another child, has twice, seriously, offered to be a gestational surrogate for me.

Asked Dr B for what surrogacy would do for my odds, given that I have two blasts (an A- and a C) on ice… and he said “Significantly better with a surrogate. Remember your levels are greater than the 90^th percentile for patients in my practice(I did not compare you to the population as a whole) , and my practice is already dealing with high cytokine patients.”

She’s talking to her husband tonight.  I will talk to mine, if not tonight, then soon.

Uteryou suck.

In the last three weeks, my life with my husband has been turned upside down due to a perfect storm of factors: stupid decisions on my part, stupid decisions on the part of others, innate and inherent characteristics and learned behaviors on my husband’s part and on mine.

So, we’re back in therapy, and the whole TTC kit and kaboodle has been thrown out the window.  For now at least.  

And we went to a Fourth of July BBQ where every single freaking female of breeding age was pregnant (hugely) or nursing or chasing a toddler or all three at once (ok, maybe two of three)… or was a lesbian cuddling indulgently with her honey.  Except me.  (ok, I actually was cuddling cutely with my nonlesbian honey.. because no matter how mad we get at each other, we manage to forget and fall back into our habits of being cute.  Most of the time.)

Therapy session #2 is tonight.  And just for grins, I filled out the form at California Conceptions for the whole embryo adoption gig.  Even though I know my husband is 110% dead set against anything like that.  (“The reason I want to have a child is to see what YOU plus ME equals.  I don’t care about what SOMEONE ELSE plus SOMEONE ELSE makes.”)

I don’t know if this means I would ever create a forced choice– like, I’m gonna get me an embryo and you can like it or lump it– or if I’m just sad and wishing I were pregnant.

I mean, shit.  Even my infertile bestie in Seattle is now pregnant (and having morning sickness) with her donor-egg baby.  Don’t get me wrong, I’m pleased and relieved and worried and happy all for her.  I wouldn’t want it any other way.  But for real… *sigh*

I haven’t any idea where I am in my cycle not that it matters, chances of us doing the business are ZEEEEEE-roh, and if we DID a million times, it still wouldn’t work.

AND… why bother with embryo donation? because I’d still burn that embryo to a crisp in the fiery immunological furnace that is my uterus.

There is no “us” in uterus.  My uterus is fully on its own.  It’s off the reservation.  It should be “uteryou.”  As in, uteryou suck.

Much belated update..

It’s really painful to check in here on my blog reader and see how many infertiles are pregnant or have a newborn (or two).  Painful and annoying.  Just like coming in to work and having everyone be pregnant or returning from maternity leave.  OK fine not EVERYone but at least 3 women out of an office of 40.  Where is some of that water so I can have some?

I met with Dr Braverman in NY in mid-May.  The short version is, I don’t know very much about whatever is wrong with me, and Dr. B has some ideas but needs to do more research and reading.  We don’t have a plan in mind for next steps– although I did get two more pricey tests run by Reprosource– and right now we’re just kind of in limbo, waiting on results.  The problem is I have only two blasts left.  If I had ten, we could kind of tinker with things… but at best I have two transfers left.  So frankly, I’ve kind of checked out.  I’m pissed at the whole deal.

I mean, seriously, WHAT THE FUCK.  I may not have done everything right in my life, I may have made stupid choices and made stupid mistakes, but I have not been a BAD person.  And in all other arenas, there wasn’t ANYTHING I couldn’t accomplish, given enough hard work and determination on my part.  So really– life– why?   I did my best, I found the best doctor, and… what the fuck.

I guess you could say I’m already starting the process of wrapping my brain around childlessness.  (The transition from childish to childless is much quicker than you might imagine.)

I’ll let you know when I get the next results and what Dr B says.

 

Yeah, so, about that whole pregnancy thing…

This was my first transfer ever.  I’d done the one egg retrieval at Sher’s in Vegas, and made no blasts.  Two ERs with Dr B, 4 blasts, all frozen because we had to get my cytokines down to hope for a safe transfer.  Anyway–

My first beta was on May 1, eight days after the FET on April 23.  I’ve lost track of how many days old those blasts were, either 5 or 6, but the late A one was hatching after the thaw, and the early B was still dividing and differentiating between the “lump” that would become a baby and the “surrounding layer” that would be a placenta.  That beta was 371, and on Thursday May 2 Dr Braverman called to tell me I was pregnant… that even though I was doing biweekly hcG boosters (5000 units each), this number was sufficiently high to be definitely pregnant.  All good!

Second beta on May 3.  He emailed me on Saturday because the lab still hadn’t gotten him the results, and after some scurrying (they had a bad fax #) he emailed to tell me there were problems– the beta was only 128.  This was problematic of course, but he wondered if the first beta was somehow unusually high because of the booster, and my friend L___ suggested maybe I had two embryos implant and then one died.  So I was upset, but trying to hang on and be hopeful.  The third beta Monday (yesterday, May 6) would be crucial.  If it went back up, good, and if not, bad.

So, yeah… about that whole pregnancy thing.  Yesterday’s beta was only 101.  Definitely a chemical.  Dr B told me to stop taking all my meds, and I’ll get another beta Friday to follow it down to zero.  I’d already redrawn blood for a massive panel of (some old, some new) immune tests last week Wednesday, so I’ll be seeing Dr B in NY on the 18th to go over the results in person and figure out a few things:

— was there some new change in my immune status, which would be fixable leading up to another FET?

— if not, that kind of makes me think it was a chromosomal thing.  We have two frozen blasts left, an early C (C for Crud) and an early A (for Almost enough to make me excited.)  So, one more shot, basically.  (And I’m so freaking happy we didn’t take Dr B’s advice and put all four back at once.)

Although Dr. B (pre-FET) told me that I was on maximal immune therapy, I’m thinking there was enough time since my last humira dose (February) that maybe the TNF/IFN went back up.  Or something.  To me, right now, the lesson learned is, retest the immunes before the next FET!  Like, closely before.  Like a minimal number of weeks before to have the results but maximize their “freshness” and relevancy.

Anyway.  Cried on the sofa last night and then killed a few innocent pieces of pizza.

One more chance, folks.  *sigh*

not so fast

chemical

 

crap