Worst IVIG yet...treatment #5

Yesterday afternoon, I had IVIG infusion #5. I had really hoped that IVIG infusion #4, sucky as it was, would be the last, but my reproductive immunologist's blood work showed a spike in my TH1:TH2 levels...not just a little jump, but a good sized one, so I reluctantly opted for another treatment. I did refuse, after how dreadful the last infusion was, to do it in the office again. He must have heard in advance from the nurse that there was no way I would agree to that again, so he relented and let me have the treatment at home with a private nurse (I have to pay for her time if it's in the office too, so this was not an added expense).

If done at the usual speed, it's a four hour infusion. I usually feel "okayish" for the first half hour or so and then get clammy and cold and pale, then get a low-grade fever, which starts to lower by the time the infusion completes. They dose me up with two tylenol and two benadryl ahead of time, so I'm a bit groggy.

This time, I actually felt pretty good at first and opted to sit up on the couch and read for a bit...then all the sudden, I thought I should probably lie down. By the time the nurse got me into bed with the IV hung up, I was shaking violently. I couldn't tell if I was having chills or just tremors of some sort. It was a bit wild. I also felt very short of breath and was kind of panting. She wanted to turn off the infusion, and I wanted her to keep going (so we could finish and she could leave). We ended up turning it off until the shaking reduced some and then continuing. I spiked the usual 101 degree fever, but then was able to sleep through a couple of hours of it, which helped a lot.

So one more infusion behind me. But yuck!

The whole time I was shaking and feverish, I was worried about Ms. Magpie. If *I* was having this reaction, how was she doing? Was this hurting her in any way? She was very quiet last night and into this morning, which had me worried, but by mid-day today she was her usual kicky and squirmy self (much to my relief).

My reproductive immunologist is making noises about me continuing this treatment until I reach 34 weeks.

God, I hope not. Of course I would do anything to make this pregnancy a success. I just wish I believed in this treatment a bit more (at all?).

Mo

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Immune testing and IVIG #3

Thank you for all of your encouragement and support. I really, REALLY, appreciate it. It was so reassuring to see the little embryo waving about yesterday. Seemed definitely there - maybe it's sinking in that I'm pregnant, finally. That only took 8 and a half weeks! I succeeded again with self-administering the PIO injection last night and Ms. Moxie has had her twice daily constitutionals (dog walker is taking her for the third one)...so I'm making it through the week as a pregnant solo dog parent so far.

I have been lightly spotting again since last night, damn it all...which has me feeling keyed up and anxious about things. It's light. More a pink/brown tinge than anything...but still. I wish it would stop, already! I try to tell myself it's no big deal, but it scares me, and I realize that's maybe sillly, because it is really very little. But I don't want to have any spotting or blood at all! None, I tell you!

In other not-so-exciting news, at 5pm today, a nurse is coming to my apartment to administer IVIG treatment #3.

Blech. Just thinking about it makes me nauseated and tired. I'm chugging water right now, as a matter of fact, because that supposedly helps prevent the pounding headache/migraine I had the first time I did it (although I drank gallons of water then too, so who knows...).

Like last treatment, I'll be doing this infusion in my home, reclining in my comfy bed, which hopefully will make it less onerous. And although I'm really not sure if it is helping or not, I would do anything to keep this pregnancy afloat.

I went back to the reproductive immunologist at the end of February and had some of the immune markers redrawn to see if they were improving with the IVIG/ prednisone/ lovenox triumvirate.

And things look decidedly better...but according to the doctor, not quite normal yet. Hence this third treatment.

Apparently, my natural killer cells are much better, but my %CD3, which is one part of the natural killer cell assay, is still elevated at 86.7 (upper limit of normal is 85...I'd say close enough...but he disagreed).

My TNF-alpha levels, which are part of the TH1:TH2 ratio reproductive immunologists love to look at is also slightly elevated at 31.6 (upper limit of normal is 30.6...again, I'd say normal enough, but he begs to differ).

So a third IVIG treatment it is. I am hoping it is the last. I hate the side effects, and I really hate the $3,000 price tag, especially since the research evidence doesn't compel me.

Here's hoping this does the trick and I am all done with these treatments after this. I'm feeling pregnant enough to feel like I'm definitely putting the two of us through this, this time. Sorry embryo! I hope this stuff doesn't make you feel as yucky as it makes me feel! And I'm hoping it helps you stick around for the long haul. Please.

Just to help motivate me (and hopefully not give me nightmares!!), here's a picture of a natural killer cell supposedly destroying an embryo. This is what we are trying to prevent. Hopefully it's working!! (or it's not even a real issue...either one is acceptable to me...).

Yo, NK cells! Get away from my embryo!!!

Mo

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Off to see the wizard

Today I woke up sicker than stink. Remember that cold I thought I was coming down with? Well, it's here: fever, chest  cough, malaise. Awesome. I'm spending the day in bed with Moxie curled up beside me.

Around noon, I went in to see the miscarriage wizard, aka the reproductive immunologist. Strange choice on my part, since I'm so ambivalent about him, but I'm grasping at straws here. I would see anyone who has some ideas on what I could maybe do to salvage this pregnancy.

Here's what the wizard did and suggested:

• He drew buckets of blood to check my NK cell functioning, my TH1:TH2 ratio, and my clotting ability (b/c of the Lovenox). Results pending.
• He wants me to up my prednisone to 20 mg (from 10mg).
• He also wants me to do 4 endometrin suppositories instead of 3, in addition to the 1.5cc of progesterone in ethyl oleate daily.
• He wants me to increase the Lovenox to 60mg (from 40mg). I'll think about it. Additional Lovenox makes me nervous. I don't want to add intracranial hemorrhage to my problem list, you know?

He also did a transvaginal ultrasound but couldn't seem to figure out how to zoom in very much (sigh). There is one gestational sac, looked oblong to me (worrisome, but he said it didn't matter). Didn't see a yolk sac, but as I said, his zooming ability seemed impaired, and these are small things we're talking about here. It's still fairly early - 5 weeks, 3 days.

I have another ultrasound lined up with my local RE on Friday. My RE is very good at zooming. So we'll see what we see. There really should be at least a yolk sac by then. I will also check the progesterone level again tomorrow and hopefully it will be bumped back up. Don't know if I'll check the hcg again. Not sure I want to know what the level is.

I'll be honest. I'm not very hopeful about this. I'm no longer cramping and am now feeling basically nothing in my uterus. I find myself starting to mull over what's next for us, but then I catch myself and try to just come back here for now. It's not over 'til it's over. And this really isn't over yet. Still...I guess I'm trying to prepare myself. We've been here so many times before.

Thank you so so much for your good-outcomes-with-low-progesterone stories and for your comments in general. I can't tell you how much they have helped to read. And re-read. And re-read again. So thank you.

More [cough] soon.

Mo

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HCG level 11dp5dt plus IVIG #2

Sorry to leave you hanging. I thought I'd be able to post during the IVIG infusion, but the nurse could only get an IV line into the crook of my right elbow, making my right arm fairly useless for typing (and I'm right-handed). Add to that hefty amounts of Benadryl and Tylenol, and I promptly fell into a Benadryl-induced coma for the night, slightly nauseated and head dully pounding. Which is how I feel today. Blech, blech, blech. I think I might puke.

We dutifully went in to the little country lab yesterday morning and got the blood work done. I was feeling somewhat less anxious than I thought I would because I had peed on a stick and the line looked nice and dark and, well, reassuring.

The numbers came back reassuring too.
Beta HCG = 445!!
P4 = 38.68

So things seem to be continuing well. Huge relief over here! I am happy, but also realize I keep waiting for the other shoe to drop, because, well, I am good at dropping shoes. I have a history of a bunch of dropping and dropped shoes trailing behind me where IVF and pregnancy are concerned.

But so far so good.

I had a brief thought of canceling the IVIG after we got that awesome beta, but then immediately thought, Everything is actually looking good right at this moment - why in the world would I ever mess with success? So we went ahead as planned. Really hoping this treatment was it for me, though. This stuff is tough. I feel yucky.

Physically, that is.

Emotionally? I couldn't be happier right now.

One moment at a time. Still pregnant over here at this moment, today. Can't believe it.

Mo

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7dp5dt: never a dull moment: with update

Thank you all for your congratulations and your excitement for us! I'll be honest - I was reading a number of your words sitting in Grand Rounds yesterday and some of you made me cry. Really, thank you - so many of you - for taking the time to comment. It's like through your excitement, I can capture some of my own. I get a little shut down about this after all we've been through, but your happiness for us, the outpouring of encouragement and congratulations, broke through and helped me feel my own cautious hopefulness more.

So we are just the teensiest, weensiest bit pregnant. Again. Unbelievable, isn't it?!

I'm shocked. I've been emotionally preparing for over a year now to never be pregnant again, grieving in a way I never had before that maybe I would never see two lines on a test again, maybe I was not meant to ever carry a child, maybe not meant to even have children.

So it is pretty special to be right here. Still pre-beta, even. But here.

But of course, where is here? Here is still a very precarious place.

Yesterday was a busy day that required me to book it between various locations in the hospital. I have been at work all week but keeping pretty sedentary, slow-moving when I have to move, phoning into meetings instead of showing up, keeping fairly desk-bound and therapist-chair-bound. That was not possible yesterday, and I felt nervous about it, nervous that somehow it would jinx things because everything feels so fragile, so "I can't even believe it" still.

It was about 1:30pm yesterday, just after I had taken the huge leap of faith and audacity to schedule an OB appointment with a new OB I want to try out (because, yes, I was worried she would ALREADY not be taking patients with my due date...which turned out to be right, although they let me schedule anyway because I'm on the med school faculty). I ran to the bathroom on my way to yet another meeting, looked down at my pad, and there was pink. Not much, but still.

Ugh. Spotting. Already. WTF?

This has never boded well for me. "Boded," is that even a word?

It wasn't much, not even when I wiped, so I went to the meeting and tried to ignore the increasing cramping and sense of foreboding I was feeling. During the meeting, I decided that as soon as I could, I was canceling the remainder of my day and going home to lie down. After that meeting, Will and I had a brief phone consult with Dr. G at NYU, scheduled long prior to this transfer to discuss their egg donor program. Beyond the weirdness of talking about egg donors while having just gotten a positive hpt, the talk was interesting, actually. He recommended that considering that during our sixth and last pregnancy we lost a chromosomally normal little boy, that we should consider adding prednisone, lovenox, and IVIG to the mix this time...which we're already doing. But I've felt like I'm sneaking around doing, because neither of my REs supports it (Dr. Schl. calls it "hocus pocus"). So it was nice to have another leading RE actually say, yes, you should probably do that with this FET and also with a donor if you end up having to go that route. You may be in that small subset of women who need immunological intervention. Just to hear him say that was worth the whole call. While waiting for him to phone us, I cancelled my two remaining patients for the day and gave my administrator a heads up that I wasn't feeling well and was going home. Will bustled me into a taxi right afterward and I went home and straight to bed, cramping pretty moderately the whole time. Sigh.

The spotting, however, seems to have stopped. Thankfully. The uterine pain - and outside of uterus left-side pain - are still fairly intense at times (it made it hard to sleep), but I'm trying not to freak myself completely out (ectopic! impending miscarriage! lovenox-induced embryo-killing hemorrhage! Ahem, cough.)

I'm semi-successful at moments in soothing myself, at other times failing miserably.

Here's today's HPT:

Doesn't look a whole lot different to me than yesterday - but Will says it looks a little bit darker to him.

I decided I am going to get my progesterone and estrogen levels drawn this morning, just in case somehow my progesterone is too low and that's contributing to the spotting/cramping. I'll throw in an hcg level, you know, since I'm there anyway. I know it's only 12dpo, that I'm probably jumping the gun and being unreasonable, but oh well. I'm giving myself permission to be unreasonable for now...maybe even for the next few months...if I need to be. I'll update this post later today when I get the results.

I asked Will this morning if I was being a little crazy. "A little," he said. Poor Will.

Anybody else have spotting at this stage of the two week wait and have a real, live, take-home baby outcome? Or if I should start getting ready for this to be over, let me know that too.

And thanks - truly thanks - for being out there, and being with us in this. I'm grateful and happy to be here, really, I am, I just wish it didn't feel so tenuous.

Mo

************************************
Update at 4:42pm: I finally heard from the nurse at my local NYC clinic. Been sweating bullets over here!

So...

HCG = 69.3!!
Progesterone = 34.3
Estrogen = 442

Not bad for 7dp5dt!

Now just to hope that the beta keeps going up! Phew!

************************************

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Regret management is expensive

Despite the ongoing silence, we are continuing to prepare for the frozen embryo transfer in Denver this Thursday - I'm in the midst of a whirlwind of preparations:

• Two months of Depot Lupron to quiet endometriosis and improve endometrial receptivity? Check
• Consult with reproductive psychiatrist (double boarded in OB/GYN and psychiatry) after crazy mood downturn on Depot Lupron? Check
• Eliminate all caffeine, decaffeinated products, alcohol, and chocolate since New Years? Check
• Start boatload of multivitamins, vitamin D, folate at New Years? Check
• Endometrial biopsy to improve growth factors in endometrium lining last month? Check
• Electro-acupuncture twice a week for past month to improve uterine blood flow? Check
• Lining checks and hormone bloodwork? Check
• Consult with reproductive immunologist to discuss immunological plan for this transfer? Check
• ...leading to prednisone on board past two weeks? Check
• Baby aspirin? Check
• Four hour infusion of IVIG last week to quiet NK cell activity? Check
• Lovenox syringes ready to go? Check
• Denver anti-miscarriage protocol of Pepcid and Claritin ready to begin? Check

So all systems are go from a practical standpoint. I'm still feeling pretty checked out emotionally. All these steps have become entirely disconnected from the possibility of actually having a real live baby. Hence, partially, the lack of posting. If I post, I have to acknowledge we are actually doing this...and I *know* we are, but it still feels very abstract in many ways.

We've really pulled out all the stops for this transfer, doing all the things we usually do, plus doing IVIG for the first time ever. And strangely, pulling out all the stops is not about thinking it will actually make a difference, because that is just too hard for me to fathom. All of these steps are in place mainly for regret management. I don't want to look back later (quiet thought after this has failed) thinking that if only I had done X, Y, or Z, we would have succeeded. I am trying to be thoughtful in that way to make sure we don't accumulate any extra suffering on top of how unpleasant this whole endeavor already inherently is.

But seriously, folks, regret management is expensive. Both monetarily and otherwise - the IVIG in particular. The treatment took four hours of my life, and a ridiculous sum of money. Add to that that the night of and the next day, I had a horrendous headache and chest pain. The doctor had mentioned headache could be a potential side effect but would be less likely to happen if I drank a lot of water. And so I drank a ton - liters and liters. This headache I had post IVIG treatment? It redefined headache for me. I kept thinking, well now I understand the term "splitting" headache. I felt as though my head might actually burst open. It was terrible. Didn't help that I couldn't take any time off and in fact had to speak for two and a half hours at a workshop the day after. Ugh. Fortunately, by two days out, I was feeling significantly better. I hope that treatment served some purpose in addition to its regret management function, but either way, it is behind us now.

So we are close to take off...hard to believe, and yet here we are.

Thank you all for your continued thoughts and encouragement. Even though I've been quiet over here of late, it has meant the world to us.

Mo (and Will)



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17dp5dt beta results

Results just in (finally!)

Beta: 690!!!!!!!!! Doubling every 42 hours!! A 136% increase!

Estrogen: 574

Progesterone: 21.75

Will and I have been stalking the lab today beginning around noon and were so relieved when the results were finally posted! Phew! I was so worried! These numbers seem great to me and at last we heard the magic words from the local RE's office: "Looks good!" Even those sourpusses couldn't say anything negative about these results! no word yet from Colorado but I will post when I hear.

I have a message in to the local RE to schedule an u/s for later this week to check that the gestational sac is in the right place (the right place being the uterus, rather than a fallopian tube). And then the step after that will be the big hurdle: heartbeat.

Over the weekend, Will and I did a lot of reading about immune issues, especially increased natural killer cell activation (which we have) and DQ Alpha sharing (we're a 50% match). Bottom line, I think we may add a monthly intralipid infusion to our regimen, even though Dr. Schl. doesn't give credence to such issues. We're a little late to be doing this - we should have started it before the transfer, but better late than never (this issue could theoretically account for how we transferred three chromosomally normal blasts and ended up with a piddly beta of 27). We've consulted on the side with a couple of reproductive immunologists (not the one we saw before) who felt that I should add intralipids in until my 20th-24th week just to be on the safe side. There don't appear to be any major downsides, apart from another needle stick once a month and the cost. Apparently, if this immune stuff is a legitimate issue (I'm not completely sold on it and the data seems equivocal), my body may be making natural killer cells right now that are attacking those little fledgling connections the embryo is making to my bloodstream. Yikes!

More on that in future posts.

But for now, over the moon with happiness and SO relieved to have gotten more reassurance that things are progressing ok.

We want this to work out so, so badly. Everything crossed.

Mo

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Regroup with the miscarriage wizard

Today was the follow-up appointment with the reproductive immunologist, a.k.a., the miscarriage wizard. I stand by my first impressions from the last appointment - this guy is a nutter. Will has taken to calling him the "mad scientist." Throughout the meeting with the doctor, it was hard to get a word in edgewise, he couldn't seem to remember who I was and had to review my chart in front of me to remind himself of my history, he kept mixing up Will's and my professions, etc. Sigh. He may be brilliant, but he does a poor job of making good impressions. Both of us almost felt sorry for him.

As for the test results - there were some abnormalities. Not surprising, I suppose. If you take enough tests, you're bound to find something, aren't you? The wizard was not good at all at explaining the significance of them in any kind of convincing way so Will and I will be doing the research to educate ourselves. But basically, it turns out that the following immunological tests are "not normal":

antiovarian antibodies

TH1:TH2 cytokine ratio

natural killer cell assay

leukocyte antibodies

DQ Alpha antigen

The gist of it is that these immunological issues can supposedly impact implantation negatively and also lead to clotting issues (although all my thrombophilia indicators are normal, go figure). So the wizard recommended baby aspirin and lovenox + either prednisone, intralipids, Humira, or IVIG. He was really pushing IVIG specifically, but as I've said, he wasn't exactly instilling confidence in Will or me. (After the appointment, Will turned to me and said rhetorically, "Would you ever let him touch your baby if you had one?" Ah, no.) Honestly, I'm not sure if I'm willing to do IVIG. Apparently, you need 2-3 treatments (per pregnancy) at $3,700 a treatment - the first one of which is before you know if you're pregnant or not. And the treatment is collected blood products, which is also not thrilling. Combine all that with the fact that this is a very controversial treatment, and, well, I'm just not sure I'm signing up for it.

Needless to say, we'll be reviewing the literature.

Hmmm....so remember how I was wondering if going to this doctor might be opening a can of worms? Well, consider it opened. We'll see where we go from here.

To keep things stimulating, it looks like we ARE headed to Denver next week for the one-day testing on Tuesday. Flight booked, hotel reserved, rental car rented. We'll see what they have to add to the mix. This should be interesting...

Mo

Meeting the miscarriage wizard

So we met Monday with the NYC reproductive immunologist, aka our miscarriage wizard du jour. And the meeting was, I thought, a little wacky, but I suppose not all-together bad.

The doctor seemed like a smart enough guy, from Australia I think (perhaps England, I always get that wrong). Very nice, VERY chatty. A little bit of overshare with the details on other patients, for example telling us more than I cared to know about someone else's miscarriage that morning and how it had set him behind on his schedule. "You know how that goes," he said knowingly, and um, yup, we do. As a psychologist, I also know how confidentiality goes. So I wanted to say, Zip it!

It felt throughout like the doctor was trying to relate to us simultaneously as peers and as patients, which was a little awkward. And hey, I just want to be your patient, you know?

He also had a tendency to assume major facts and not let us speak. At one point, early on, he said, "I bet I could tell you your whole history" and then proceeded to make several good but incorrect guesses. So he's barreling ahead with his fictional account and I'm saying, "Nope. Actually no. That's not what happened. No Clomid. Nope. No IUI, we went straight to IVF. Um, no, sorry, all the pregnancies weren't chemical, we've had a heartbeat two times" etc., etc. I wanted to say, just listen a little, won't you?

We hit a low point in the consult when he said to me, trying to cheer me up, "You know, you've been pregnant so many times, if you don't want to have children, I think you'll have to go on birth control! Don't you agree?"

And I looked him in the eye and said, "I agree that I'm likely to get pregnant again, but I don't know that I'm likely to have a living child."

And then he said, "Oh, you're right. Maybe not, but pregnancy, definitely."

Um. Yeah.

Throughout, the doctor drew many pictures and made reference to other alternative REs and immunologists (Sher, Sami David, Beer) and overall just seemed to really enjoy the process of talking to us. Or well, at least of talking.

I just wasn't that sold on the whole thing. Funny thing is, my husband Will told me afterward that he found the doctor rather endearing. Will seemed drawn into the doctor's zaniness, but meanwhile, I was moving from skepticism to downright irritation.

I noticed my increasing wariness and had to remind myself, that's not really why we were there. We weren't looking for a good primary care clinician or someone to build a strong relationship with.

We were there because this was a doctor who was willing to do testing no one else will do and so of course he's going to be a little iconoclastic. A tad eccentric. A little fringe, perhaps. That's sort of what we signed on for, isn't it? I told myself that perhaps I had gotten too used to the straight-up academic professional types. So what if the appointment seemed somewhat haphazard, slightly sloppy, a little bit like a clinical free-for-all?

So anyway, that's kind of the what's what about the appointment itself.

Here is a list of what the doctor ended up ordering:

Serum IgA
Serum Creatinine
Protein Z
PT/aPTT/Platelets
Fasting Insulin and Glucose
DHEAS
Mycoplasma/Ureaplasma
Antiphospholipid Antibodies
Antinuclear Antibodies
Anti-DNA/Histone Antibodies
Anti-thyroid Antibodies
Reproductive Immunophenotype
Lupus Anticoagulant
Anti-Sperm Antibodies
Antiovarian Antibodies
HLA-DQ Alpha Antigen
Leukocytes
TH1:TH2 Cytokine Ratio
NK Killing Assay

He also wants us to send the tissue slides from our second miscarriage to a placental pathologist for review. This is the miscarriage in which gross pathology was done but no cytogenetics were run (because the lab mistakenly discarded the sample). He said we may be able to determine if it was likely chromosomal this way.

And he had some blood and bacterial culture tests for Will as well, which I always like, because hey, isn't Will half of the equation here?!

As we were walking out the door, the doctor said, "Don't worry! Even if everything comes back normal, I'll find something to give you anyway!"

I'm sure that was supposed to be reassuring, but given the amount of money involved (not to mention blood...and time...and hope), somehow it wasn't. I mean, if you're going to give something to me anyway, couldn't we just skip all this expensive testing?

So we shall see. Will is much more open to this immunological stuff and to this doctor than I am, which is an amusing turn of events, given his initial hesitance. Time will tell. Results should be back in about three weeks. In the meantime, Will and I will continue to enjoy our "normal" lives, lavishing love and affection on our adorable Moxie.

Mo