Irons in the fire

Item – Bullshit week is still bullshit. I woke with a migraine this morning, and just had to go back to bed and put my face in the pillows and wonder who rammed this red-hot skewer up my sinus and why? Why? Why would they do such a thing? What am I, an upside-down Edward II? Skewer has finally cooled down, and I have just found several major errors in the knitting I was (idiotically) attempting in the luke-warm phase.

Item – So, Dr Expensive’s results so far. I feel very much like a woman with a can-opener, a tin labelled ‘best quality fisherman’s bait!’, and a startled expression on discovering that this wasn’t a jokey name for spaghetti hoops. Basically, I probably have an auto-immune problem, I don’t make the right sort of antibodies on encountering H’s DNA, and I may or may not be producing silly levels of NK cells, though as Thalia pointed out, who knows if I’m producing them in my uterus lining? And as Wombattwo pointed out, who knows if this information is even relevant? Has anyone checked if women with ‘normal’ fertility and miscarriage rates get these sorts of results? And to cap it all, the ‘treatments’ on offer are expensive, experimental, under-researched, and in the case of LIT, actually banned in the USA. Oh, thank you Universe, for this clear and simple answer to all my problems.

Item – Anyway, it’s not exactly Decision Time, as we’re still waiting for my thyroid panel results, H’s DNA fragmentation results (I can’t believe that the clinic has two separate, different views of my Dad’s place in its wankatoria. Poor H (Also? The bit about the stuck-together pages in the ‘helpful’ literature? AAIIEEE)), and for my next period to roll around so I can send them a small amount of my uterine lining via FedEx, the very idea of which still strikes me as hilariously inappropriate… “Freshly gathered, carefully mixed with purest saline solution, chilled and couriered expressly across the city, this isn’t just any menstrual blood. This is May’s menstrual blood…”

Item – H, I think, is far more gung-ho than I am about these treatments. As he points out, we do have the money (what the hell else did we save so much for? he points out, gazing pointedly around the hovel we live in), and he is pretty damn keen on the idea of our own biological children (I see his point. We both have beautiful ears. It’d be a criminal waste to let such ears vanish from the human records). Me? I want more science, and I want not to miscarry again, especially not expensively, and I want my uterus to stop hurting me (also, I want an iPad, knee-boots, a kitten and a personal assistant).

Item – I am going to dinner with my brother, and sister-in-law, and my Dad and stepMum this weekend. I am dreading it. I’d love to see my brother and SIL, and stepMum, but Dad is, well, Dad. If he pulls the ‘your mother is a greedy money-grabbing whore’, or the ‘people used to lose babies all the time in the old days and it never bothered them‘ conversation gambits, I will calmly get up, kiss everyone else goodbye, and leave. It is only by holding on to this resolution with iron determination that I can face this visit at all. Yay families!

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10 responses to “Irons in the fire

  • Twangy

    Very sorry to hear about the migraine. I had one once, it made me cry, which made me feel worse, so I stopped crying. Yes, migraines are the stuff of nightmares.

    I am hopeful about Dr Expensive. I think we can say he is thorough. Yes, I think we can.

    On the family visit, I am going to hope that the rather perverse but nonetheless true rule “That Which Is Most Dreaded Is Occasionally (Just Occasionally, Mind) Surprisingly Okay” applies here.

    GOOD LUCK on this and all fronts.

  • a

    Go buy some knee-boots then. I have purchased 2 pair in the last 6 months. I don’t really need either pair, but they’re cute and who doesn’t need black boots? I mean, you need flat ones for every day and heeled ones for dress up, right? The iPad, the kitten, and the personal assistant are a little more complex, but knee-boots? That should be an immediately-satisfied desire.

    Poor H…*tries unsuccessfully to choke back laughter*

    Sorry about the migraine. Hope your dad behaves. Much luck on the auto-immune issues – I believe there’s something to that, but I have no real science to back me up. Just my own poor, piddly little experiences, which were solved with aspirin and heparin…

  • Jenny F. Scientist, PhD

    I do hope your migraine is less migraine-y quite soon. No fun at all.

    When I first heard of LIT my response was, well, unprintable, but along the lines of “No way”. After I read a whole bunch of articles, it was modified to an extended screed on Doctors Doing Basic Medicine OMFG. This is a subject on which I could write an entire treatise, not least because a) I used to be the EIC for a biomedical journal and b) my spouse used to work in a research lab run by a RE.

    It’s especially hard to gauge how good the data are given that even the good papers in fertility journals are handicapped by human-subject restrictions, the utter lack of funding, and, until recently, strict US controls on human-embryo studies. (I could also write an entire treatise on Not Quite Legal Things People I Know Have Done With Embryonic Cultures From PGD. But I won’t.) And then, of course, a lot of the studies are poorly done, with bad statistics, worse design, and tenuous conclusions. If I read “a slight, but nonsignificant, decrease” one more time my head may explode. Plus, since nobody’s funding someone to go out and mix, say, my leukocytes with my spouse’s leukocytes, the control data are, as WFI points out, not great. And then add in that nobody’s bothered with a LIT drug trial in the US yet, so lots of the studies are being done in China and Iran, which, I can personally testify, have an *extremely* variable quality of scientific research, and here’s a recipe for spin-the-wheel-and-guess.

    (My favorite quote from a LIT paper had to do with the fact that consanguinity was a negative predictor of successful pregnancy… in Iran. Occasional cousin marriage: fine. Repeated multigenerational cousin marriages: Not A Good Plan.)

  • Hairy Farmer Family

    A whopping great AAIIEEE to in-law-ness AND stuck-together pages indeed! But… H! What of your iPhone? Its internet function? Its *cough* _camera_? One does not have to be dependent on the, well, the Ick. What do we want? Better Erotica! When do we want it? Erm… well, last week, aktually, so not to worry. Placards down, chaps.

    This is all very hard. (I want to use shades of grey as a descriptor, but I think that bloody book has Done For That Phrase. ) Despite your misgivings regarding the science, given that you have to move forward in a defined direction soon, I see some logic in giving it the Full Expensive Welly, as I think you’ve suffered far too much, and far too long now, not to give everything you reasonably can to it.

    Knowing that you have done Everything You Can Manage is pivotal to finding some peace of mind on the topic (she says, feelingly), but the ‘Everything’ is such a vastly variable mileage. It stops short of assisted fertility treatment for some, and at miscarriage number 20 for others. If the sums involved do not embody your rent/food/warmth, and you can’t envisage a rainier type of day than DesperatelyWantBabyButDon’tHaveBaby, then trying the treatments you both think have a value, even a disputed value, must be worth a shot.

    I am so sorry about The Toad, Work. It sounds bloody infuriating. AND a migraine? Oh lovey, it isn’t fair, damnit. Buy your kitten, pronto, teach it to Bite Like A Serpent, and take it with you to your Dad’s. Have no hesitation about giving The Command if necessary. If ever a girl needed a killer kitty punching on her side for a while, ’tis you.

  • Womb For Improvement

    It seems insane that science doesn’t have an incontrovertible answer, but it does feel like it is shifting its way forward towards at least something worth trying. Although like you I baulked at the idea of LIT.

    Oh why can’t things just be easy for a change?

  • AMH

    Recognizing the limited value of anecdotal observations, I nevertheless offer them. When we seemed to be out of options, we consulted with an impressive variety of very expensive doctors specializing in infertility (all on our own dime – in the U.S., and no insurance coverage for treatment OR DIAGNOSIS of infertility, if you can believe it).

    I spoke with 5 (FIVE!) specialists, and here’s what I’ll tell you – every one of them had a different theory for what was wrong with us. One was convinced it was nothing more than controlling my hormones throughout the cycle with low-dose IVF. Another was absolutely convinced that my DH, despite startlingly high sperm count, was entering into “male menopause” with “idiopathic testicular failure” evidenced by asymptomatic low testosterone, and that we needed to immediately begin freezing DH’s sperm if we had any hope of ever conceiving with his sperm. And places in between, including auto-immune, sperm DNA fragmentation, and various combinations of subfertility. FWIW, we got a very expensive, alarming sperm DNA fragmentation test, which showed very alarming things, all of which proved to be irrelevant when we did, in fact, get pregnant.

    So, here’s my observation. You’re going from a brief flirtation with clomid, but mostly timed intercourse, straight to IVF with IVIG or other immune-treatment type options? That seems to skip a few steps. Why not insist on trying IUI? You can still control your hormone levels, hopefully avoid OHSS, and it’s less expensive and invasive. What finally worked for me was a combination of clomid and menopur to get a timely ovulation of full-size mature eggs, with low-dose aspirin throughout the cycle to address my clotting issues, and IUI.

    In my experience, there are two types of specialists: (1) those that simply treat, moving from one option to the next until success or options exhausted and (2) those that test everything under the sun to try to understand the problem. I always thought I wanted to work with #2. But despite all the impressive-sounding, expensive tests, the science of understanding infertility is not as advanced as these specialists represent, and what you get is a lot of inconclusive and confusing results and a plan that could have been arrived at without most of the testing. E.g., try Lovenox + IVIG + IUI to address clotting, basic autoimmune, and get sperm in the best position to fertilize the egg without the hassles of IVF. Try for a couple of cycles, then escalate.

    I was not impressed with the hypotheses and treatment plans of the best doctors money could buy, because at base it seemed like they really had no firm idea of why we were infertile. An escalating treatment plan (which will arrive at suspected immune issues for lady and sperm issues for gent without any expensive testing) really seems to be the most practical approach.

    • Hairy Farmer Family

      I share your opinion of Type 1 and Type 2 specialists! Although I feel that infertility is not May & H’s primary diagnosis. _Sub_fertility of late, yes, seemingly, but merely as a delightful entree of salmonella to the substantively botulistic main course of recurrent miscarriage.

      I do confess to being very interested in how the embryos from a straightforward IVF protocol would behave, both in petri dish and in utero, but I get the vibe that steps, plural, of escalating treatment cycles may no longer be within the desired time frame, or, indeed, the emotional tolerance zone. May?

  • bionicbrooklynite

    first of all, fuck off, dad, it very much did bother them, they just weren’t allowed to write about it, because they weren’t allowed to *write*. but a few of them did (, and anyway, read between the lines of half of literature and it’s right there, just past the teeth-gnashing about heirs. and then get your new kitten to puke on his shoes. you can take a picture with the iPad.

    as hff wisely points out, the distance to Everything does vary quite a bit, but my gut feeling from having read you for a little while is that you haven’t arrived at yours. i could be wrong, in which case i will retroactively put a cork in it, but that’s my feeling. if i’m right, then i say time to let H’s boldness carry you. fortuna does audaces iuvat, at least sometimes.

    (i will quietly whisper here that i do know the part of not wanting to do more that is not wanting to find out that even “more” won’t work. i have nothing to say to that except to nod and slide the plate of cookies your way.)

    meanwhile, i send my sincere thanks to H, whose investigative reporting on Dr. E’s wankatoria has cheered for me a not-particularly cheerful week.

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