Hello and Ed

choices

last night we had our first minor tough decision.  between about 5pm and when i got home at about 7:30, the lymph node on the left side of my neck puffed up to the size of an egg and became very tender.  when i got home, i asked ed to look at it (he’s a great yardstick – he almost always says “eh, looks fine”) and he said “yeah, that’s definitely swollen – i can see it easily”.  we decided to head to the urgent care clinic, and were lucky enough to get a doctor we’ve had before and we both like.  he took a look, poked around (with me wincing and tearing up – it’s very sore), and declared it infected.  no clue what the cause was, but he said you rarely figure it out.  he then told me he would prescribe some antibiotics.  i nearly cried – i hate them under all circumstances, and i just didn’t like the idea while pregnant.  he reassured me that the ones he was going to give me were perfectly safe, and then explained that without them this could become a systemic infection, which would be much more dangerous to the babies.  we talked about alternatives, but there really weren’t any.  ed and i finally agreed, and i’m on cephalexin for 10 days.  stupid thing still hurts like crazy when i turn my head, but apparently that can take 2-3 days to go away.

my first OB appointment is tomorrow, so we’ll see what she has to say about it.  i haven’t even taken a tylenol since the transfer, so i’m not too happy, but i guess it’s the lesser of two evils.

there’s an unfortunate side effect of that decision: i am now jet propelled and afraid to turn on the stove for fear of my ass blowing up.  i’ve been gassy lately to start with (which is really rare for me for some reason – ed says i’m becoming human, but i figure it’s just pregnancy) and then they add antibiotics?  good lord.  thank god i’m working from home.  and thank god it’s just noisy and not stinky!  (if it gets stinky, i’m going to aim for the cats; they peel paint when they fart and they don’t even apologize.)

i wonder if the neighbors can hear it…

gifts

today i had what may be my last infusion.  i’ve really gotten to know the nurses at the clinic, and they always want to know how things are going.  an infusion clinic is an interesting, and sometimes very sad, place.  almost everyone who comes in is there for a reason ranging from sad to very sad; from what i gather, i’m the only one who comes in for a happy reason, and the nurses have told me on more than one occassion how much they enjoy seeing me for just that reason.

today while i was chatting with the nurse who usually hooks me up i happened to mention that we were given a dvd of last week’s ultrasound.  she said she’d love to see it.  i happened to have it in my laptop bag, and of course i couldn’t resist the opportunity to show it off, so i told her i’d start up the computer and i’d be happy to show it to her.   she went to go get another patient going and came back a while later… with most of the staff!   i had already met quite a few of them, since i’m a notoriously “hard stick” and i’ve had a couple of nurses over the course of my treatments, but some i hadn’t seen before.  she introduced my pharmacists (three of them!), the woman who answers the phone when i call, and a handful of others, all of whom have helped to make this happen in one way or another.  there were seven or eight people there in my tiny little infusion room, all grinning ear to ear at the happy pregnant lady with the IV.

i was a little stunned, honestly.  i looked around and laughed and said, “wow – i feel like a rock star!”  one of the nurses replied, “well, you ARE!  you did it!”  i looked from one to the next, and told them, “no, YOU are the rock stars – YOU got me pregnant!”  there was a bit of giggling at my awkward phrasing, but they knew what i meant.  i started the dvd and they all oohed and aahed while i pointed out the yolk sacs and the umbilical cords, and when the babies moved they all pointed and oohed and aahed twice as much.    i thanked them all over and over for everything they’ve done, from pestering my doctor for orders to finding a way to get an IV into me (no easy task) to wrangling my insurance company.

sometimes just being able to thank someone is the biggest gift you can get.  it’s not often you get to thank the people in the background – the pharmacists and the phone lady, the billing lady and the receptionist – but i got to, and it felt really good!

the last week has been one big mess of me searching for an OB, me getting chewed out a second time by the IVF doctor, and me trying to verify if it’s really okay to stop the infusions.  oh – that hasn’t been covered.  the IVF doc is telling every OB who calls asking about the infusions that he sees no reason to continue them past 10 weeks.  the site he sent me to when we first discussed the infusions, however, says they should continue through 20-24 weeks.  it also says they should be monthly, not weekly like i’ve been getting.  he has yet to offer me any reason for stopping them or any research to support this, so i’ve been hunting high and low for data.

on the insurance front, i got a call from a nurse at cigna who is part of their Healthy Mothers Healthy Babies program.  because i’m high risk (twins) i got bumped to the top of the list.  when she asked if there was anything i needed, i told her about the infusion mess.  i explained that cigna hadn’t offered me an equivalent in-network alternative, and so it seemed to me that they should cover the place i’d been going.  she said they would.  i told her i’d been told they would not.  her response was “well, i’m telling you that they will.”  a few hours later i got a call from the clinic saying that they’d had a call from cigna.  cigna is covering my infusions at 100%.

on the doctor search front, when i last wrote, i’d been told that Eastside (the highly specialized Maternal Fetal Medicine clinic) would probably be able to take me on as a regular patient, rather than just as a cooperating doctor to another OB.  the short version is this:

Eastside decided i wasn’t high risk enough to take.  they referred me to a Dr Wells, who wasn’t taking new patients.  that office then said that i could land with one of two other doctors.  turns out one of them isn’t taking new patients (how did they not know this about their own doctor?) but the other is.  then they said the earliest i could get in was the first week in february.   they’ve managed to weasel me in this coming wednesday, but the doctor i’m going to see is on call, so of course if a baby decides to be born, i’ll get pushed out.  this is probably okay, since a good deal of the appointment will be with a nurse anyhow.

meanwhile, Eastside is going to handle the more complex, specialized parts of my pregnancy.  anyone with multiples is considered “high risk” (lame) and i have a couple of added factors.  some i knew about (diabetes runs in my family, so on top of  the increased risk of gestational diabetes for twins, i’ve got that history; my kickass immune system; my “advanced maternal age”, though i always remind them that my eggs were removed and frozen before i fell into that category) and some i didn’t. during a discussion about the autoimmune factors, i happened to mention to the Eastside doc that my SSA and SSB tests were both positive (these are the two Sjogren’s indicators).  her eyebrows went up and she told us that Sjogren’s can be a contributing factor to something called a heart block, so we’ll be closely monitored for that.  she added that it’s very rare, but it can be taken care of early so they watch for it.  she said it’s more likely i’ll wind up with diabetes or pre-eclampsia, but since the heart block is an easy fix but bad if not caught, it’s on the watch list.

on the infusion front, things have been very stressful.  on one hand i’ve got my IVF doc telling everyone to stop them, and on the other hand i’ve got all the OBs saying they’ll do whatever he says because they aren’t familiar with the protocol.  after much panicking, a ton of research, and help from richard (who is familiar with the medical industry from the inside), i’ve managed to find some great information.  one of the doctors who pioneered this use of intralipid and uses it frequently has a discussion forum online, and he ANSWERS things!!  my own doctor won’t even give me a straight answer, and yet this guy gets online and responds.  i’ve scheduled a phone consult with one of the doctors who published the article about this therapy, but i may cancel it (it’ll be $250-$350 out of my pocket, and may no longer be needed).

the short answer is that there are two reasons to do intralipid infusions with IVF: autoimmune and alloimmune.  both revolve around NK cells.

the autoimmune problem is because the NK cells see the embryo as foreign and attack it.  we know i have this.

the alloimmune has to do with Human Leukocyte Antigen (HLA) compatibility.  (more here, partially quoted below)

When the sperm and the woman hosting the pregnancy share several HLA antigens (e.g. HLA- B, C, DR, DQ or DP), there is a breakdown in normal HLA-G related cytokine signaling. As a result, an imbalance occurs between the cytokines called TH-1 and TH-2, with TH-1 cytokines predominating. This often causes progressive or sudden implantation (trophoblastic) failure, most commonly manifesting as recurrent miscarriages and sometimes as unexplained IVF failure.

…

That is why successful/viable pregnancies that occur in spite of male-female alloimmune clashing usually are ones that are initiated very early on in a new relationship – prior to repeated exposures of the decidua to alloimmune “clashing” causing NK cell sensitization and a sustained NK cell cytokinopathy (i.e “allo-autoimmune conversion). This also serves to explain why many cases where progressive sensitization of NK cells precedes allo-autoimmune conversion begin with a viable pregnancy and progress through a phase of recurrent miscarriages and/or end up with “perceived infertility.”

so yet again, NK cells.  ed and i have not been tested for this.  so here’s the big difference: if the autoimmune problem is the only problem, we can stop infusions at 10 weeks; if there is an alloimmune component, we need to continue to 20-24 weeks.  i’ll be requesting that test before my butt hits the padded table at the OB’s office.

we did have a pleasant surprise at the Eastside appointment: an ultrasound.  they didn’t even have to do it transvaginally – it was a regular external ultrasound.  and much to my surprise, the very first thing we saw was a tiny SQUIRMING baby!  both of them are kicking and squirming at 9 weeks.  they both measured exactly where they should be (one is two days ahead) and the heart rates are good.  everything looks perfect.  we even got a dvd.  (i wish i could figure out a way to get it turned into something i could post – there must be a way.  admittedly i haven’t looked very hard.)  i was so upset and stressed when we got to that appointment that my normally freakishly low blood pressure was 138/80 – high enough that they handed me flyers on hypertension.  but seeing those little feet waving around made everything else stop – what an amazing thing to watch!  there they were, alive, moving on their own (just electrical impulses so far – no goal-oriented movement, but STILL!!), perfectly sized…  as soon as the nurse was out of the room and i’d wiped up the ultrasound goop, i gave ed a big hug, and had a good cry.  what an incredible relief to see that movement, and what a reality check.  somehow, seeing that gave me giant piles of hope and the strength to believe it.  i still always seem to add “we know it’s early and we’re realistic about this” when telling people i’m pregnant, but it’s starting to sound silly to me.  it’s starting to feel like maybe it just might actually happen!

the old OB’s office called this morning to tell me that they don’t want me. i was dumb enough to be honest and tell them up front that we’d probably switch to another doc who delivered at Evergreen, and they decided that if i wasn’t going to stay there, they didn’t want to bother figuring out the infusions. their excuse was that i should have consistency in care. yes, i agree, and i’d like that, too, but right now my first priority is to stay pregnant. that means getting the infusions prescribed. i called the group at Evergreen and told them that i now had no option other than them. they reassured me that they were going to get me in.

at about 3:30, i got a phone call from our doc at NW. this is HIGHLY unusual. he never calls anyone. before today, i’ve spoken to him over the phone once in nearly two years, and that time was because there had been mass confusion caused by lack of information from his clinic’s end. this time, he wasn’t apologetic. he chewed me out, actually. apparently they’d had many requests for records and information for me and he was very stern with me about the whole thing, telling me that i needed to come to a decisions about who i wanted to transfer to and stick with it. i was so flabbergasted that i didn’t really respond. both docs he had sent me to turned me down, and everyone i called on my own turned me down. the lack of transfer had nothing whatsoever to do with me, and i have no idea where all these requests came from, because the only places i authorized to request records were the old OB and the Evergreen OB. i do know that the Evergreen OB had gotten sick of waiting for records and walked over the NW’s offices and asked for them, which probably rubbed them the wrong way, but i certainly didn’t send them there (and frankly, if they want to go to bat for me, i’m all for it at this point).

there’s more to it, i’m sure, but i’m too fried to sort it all out. the end of today’s story is that i have an appointment next week with the group who practices at Evergreen, and they believe they will be able to take me. i’m assuming i’ll be paying for next week’s infusion, since the appointment is on tuesday and i’d be very surprised if they can get it set up in a day (although it sure would be nice).

the other note is that the Evergreen infusion center is insisting on putting in a PICC line (wiki) for my infusions. the doctors are fighting that, so hopefully that won’t happen.  it’s an added risk and it’s only good for 30 days anyhow, so they’d have to redo it twice.  not the ideal situation at all.  i’m hoping they see reason.

two things happened at once: my insurance change from Principal to Cigna and i “graduated” from the IVF clinic to a regular OB/GYN. those two things came together to create utter complete confusion and near disaster, averted only by my willingness to cough up $610 with a few hours’ notice. the following is what happened yesterday.

wednesday afternoon, out of sheer desperation, i called the only OB i knew i could get in to see immediately: the old OB. i told them up front that i would probably be transferring to Evergreen “because it’s closer” but that i needed to get in with someone right now and get the infusions squared away. they made an appointment for me today, which of course conflicted with the midwife appointment. i canceled the midwife meeting and ed and i went to see the old OB’s nurse.

in case we needed any reminder at all about why we didn’t want to deliver there, we were treated to the broken elevator in the disgusting badly designed parking garage, then the filthy carpet in the waiting room, then a receptionist who came out 20 minutes after the appointment time to ask me if i needed to fill out paperwork, to which i replied “i have no idea – do i?”. she handed it to me and told me they couldn’t see me until lit was done, and i told her i was concerned about time. “oh no,” she said, “they’ll still give you an hour appointment.” “that’s not what i meant. ed and i both have to get back to work. it’s 23 minutes after our appointment time and you just now gave me papers to fill out.” when we finally got called in, it was more that 30 minutes after the appointment time. i told the nurse that we couldn’t take an hour, because we both needed to leave and i needed to be home to deal with medications at a certain time. she got us out of there in 30 minutes, but the entire appointment was her reading us the questions i’d just answered on the form, and then taking my blood pressure. oh, an i peed in a cup. which i could have done closer to home at a lab that’s part of that clinic at any damn time i wanted to. it was a complete waste.

when i got home i got a very strange phone call. apparently someone – i’m assuming the IVF clinic – had called Evergreen’s infusion center about me, and the infusion center had called – of the dozens of practices there – the practice i had spoke to earlier who liked me because i’m so “high-risk” (yes, i insist on putting that in quotes). they thought i’d called the infusion center, but i hadn’t. so i guess i – or rather the seattle midwife – chose well.

with any luck, tomorrow will bring good news. worst case scenario, i pay for the infusion next week, too (it’ll be less since i’ve satisfied the $500 deductible, but it’ll still be upwards of $300). best case, i get a top-of-the-line OB who delivers at Evergreen and isn’t mystified by infusions. we’ll see.