Testing times

To resume – we left us in the street, H describing his tribulations in the lab’s ‘special’ collection chamber, and me, his loving supportive wife, shrieking with laughter. Oh, and Ossa on Pelion, once H had mastered the difficulties of Unhelpful Naked Ladies and The Looming In-Laws, there were people trotting noisily about in the corridor, leading to good old ‘if I can hear them, can they hear me?’ moment. Nevertheless, H rose manfully to the occasion, and his sheepishness on rejoining me was entirely due to the fact the entire staff of the lab obviously knew where his hands had just been, and he also knew very well indeed that I would inquisitive also mirthful, because I am puerile.

So. I have here the receipts, and TheSheila’s helpful link to Explanations Of Everything Immunology in the comments of my last post, and let us see what all this expense and pother is for. (The expense! AIIIEEE!).

Item one – The consultation fee. Well, that is self-evident. Onwards.

Item two – FGA 4+6. What in the name of wonder is this? Comparing the price list with the FAQ with my own memories of Dr Expensive’s explanations, I conclude this is the Natural killer cells panel TH1/TH2 intracellular cytokine ratios. Basically, has my psychotic immune system filled my blood-stream (and hence my uterus) with Cells of Rage, dedicated to hunting down and destroying every possible trace of DNA it can’t be having with, starting with cold viruses and the like, passing into panicked reactions to random proteins in pollen and, say, kiwis, and ended up going on rampages against embryos trying to get a grip in the old ute. The science gives me brain-ache. The treatments are usually things like steroids and intralipids, or even IViG, heparin, progesterone. Anyway, it’s treatable.

Item three – LAD. Oh, this is Leukocyte antibody detection. A sample of my blood is mixed with a sample of H’s, and then they look to see if my leukocytes have gone into rabid attack mode and if so, how rabid, and why. Basically, my leukocytes are supposed to attack ‘foreign’ DNA (virus, bacteria, fungus), and ‘self-but-altered’ DNA (ie tumour cells, cancer). If my immune system can’t ‘recognise’ H’s DNA as foreign, it then assumes the embryo is ‘self-but-altered’, and kills it. The treatment is controversial and complicated, and involves inoculating me with H’s lymphocytes, in an attempt to get my body to recognise his DNA as foreign-but-benign and leave the embryo alone. If H is ‘too similar’ to me, they even use donor lymphocytes. It is thought that the first pregnancy ‘sensitizes’ the woman’s immune system, and screws up subsequent pregnancies. My first was a missed miscarriage that had to be scraped out of me, and all the rest have been early losses and ‘chemicals’, which seems to hint that my immune system has learnt since the first miscarriage to kill embryos on touch-down. But the treatment! Expensive and experimental and controversial and involving blood-products from donors! Fucking fucky fuck fuck!

Item four – DQα Genotype. Both H and are tested for this. All our cells have two ‘markers’ on their surface, which our immune systems recognise or fail to recognise, one inherited from each parent. If our embryo inherits a combination of alleles that make its markers too similar to mine, my body thinks it’s a tumour and kills it (basically, a similar result to the above via a different genetic mechanism). Treatments, again, are steroids and intralipids or IViG, Humira, or even the above LIT treatment with lymphocyte inoculation. Again, it is possible for the woman’s body to become more sensitized on subsequent pregnancies (causing earlier and earlier miscarriages, implantation failures, etc.). Or there’s always donor eggs or sperm. And the donors would also have to be tested, to make sure we aren’t wasting our time. *tears hair*.

Item five – HVS. HVS? What? Ohhh, High Vaginal Swab. Yes, I remember that. I wince every time I think of it. We’re testing for chlamydia, gonorrhea, bacterial vaginosis, and other similar STDs and infections that can create an inflamed, hostile uterine environment and damage the growing embryo. Treatment, month-long course of four different brutal antibiotics. Yay!

Item six – Semen C+S – Same test as above, only on H, and for which he battled the combined forces of bad porn, in-laws, and a possible audience. Apart from the risk of passing the infection to me (we’ve been banging sans condoms for about 15 years now. Horse has bolted), an infection could damage the quality of the sperm, anything from killing them outright to stealthily warping the DNA inside them, so they produce crappy little embryos that don’t know how to grow organs and conk out instead.

Item seven – Chlamydia, Mycoderma. This is code for more testing of the above. It is theorized that the infection could have migrated to the uterine lining and no longer be present in the vagina, or present in the vagina and uterus. So they give the lady a large padded envelope containing a small padded envelope and a plastic pot, and send her home to await her next period, and on the day of heaviest flow, they want that pot filled and, get this, FED-EXed to the lab. I am to send a pot of blood and gunk across the city by expensive courier. I am floored.

And this is not counting the repeat sample H is to give this week, for sperm-count/DNA fragmentation (which can be caused by many things other than STDs, you know, including shitty-bad luck).

On the matter of STDs and other infections, H and I have been both boring and safe in our sex-lives. I have not had sex with many people, and except for with H, I was neurotically scrupulous about condoms. H confesses to one (ONE) silly bout of unprotected sex when he was 17 (which I’ve known about since, I think, the day after it happened (and it was before we started dating)). H and I stopped using condoms when I went on the pill, by which point we were an Established Couple Very Much In Love, also we were 19 or 20. So neither of us had much chance of picking up an STD. But if one of us had, the other had pretty much no chance of not being affected. The thing is, the thorn is, the person H had unprotected sex with at 17 had prior to that had unprotected sex herself, with several people who were not exactly careful or abstemious, so there is a tiny, remote, possibility that she gave H an STD before he even so much as considered me for a kiss, let alone life-long bondage (tee-hee). And, yes, I know this incautious sexual partner of H’s rather well, and thereby know rather a lot about her sexual habits (rather than suspect, or maliciously impute).

If we do turn out to have an STD, I may have to kill her.

There is always the possibility that either H is or I am lying about how cautious and sensible we’ve been since, or how loyal. But I know me and I trust H.

And there is always the possibility that the infection I developed after my first miscarriage (post-D&C) never went away, and that was totally not down to carelessness on my behalf. There are bacteria that live naturally in the vagina that are fine where they are, but a problem if introduced into the uterus.

Which is why we agreed to do all the infection tests. Despite being as faithful and devoted and clean-living as Darby and Joan.

And now we wait for results. Well, H has to go and battle the bad porn and looming in-laws again, bless him, and then we wait.

I am in a bit of a state, mind you. As we were sitting in Dr Expensive’s office, I has being harrassed by the thought that he was taking us seriously, which meant there were serious things to do, which meant treatments and expense and bother, which meant laying my poor heart open like a laboratory specimen to That Bitch Hope, and I don’t want to hope, I don’t, I don’t, it hurts too much, I want my nice safe Bat-Cave.

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32 responses to “Testing times

  • g

    The thing I find utterly frustrating, dear May, is that in twenty years we will actually have decent science on whether half of those Ix are actually useful. Tis vexing. Very vexing. Because, as you point out, half the treatments are rather unpalatable. I think mostly I would be happy with the NHS shooting you a decent cycle of IVF and taking it from there.

    xx

    g

    • May

      But I don’t really want to do an NHS IVF cycle with unresolved and potentially treatable immunology issues in situ. I won’t get much in the way of immunology treatment on the NHS, and if I get pregnant just to have another miscarriage in such circumstances, I will shatter like a CD dropped from the 20th floor. Because it might not have needed to be that way. So, no. Not doing IVF with ANYONE until I know if any treatable immune issues are treated. Or, alternately, are too difficult to treat, or treatment is too unpalatable or expensive, in which case I am not prepared to keep trying and losing pregnancies, IVF or home-made, and that will be the end of that. So.

      • g

        Understand completely lovely May. But it is a shame that even if some of those tests turn up something they’re still controversial, and its hard to know how to interpret the need for Rx our if the rx works and.what protocol and method and so on. Just south blind statistics and how a normal distribution works, a certain proportion of results will always come pout of the reference range deemed normal and the more tests you do the more likely that is to happen and the harder it all gets, especially when in relatively new scientific turf

        • g

          And do choose more suitable words where my phone had deemed I meant entirely ridiculous ones. It won’t let me correct them, annoying thing. I hate that a test had to have math and probability in it’s interpretation, generating such delightful concepts a sensitivity, specificity, positive and negate predicative values all in context of pre test probably and background prevalence but it a even harder in thus area

          • g

            And even more annoying, one can find two doozies who will UAE the same information to very different things and now I have to go and flush my phone down the loo because it spells like a chimp on acid and won’t let me fix it.

          • g

            And my phone thinks I really want to say doozies for doctors. It may have a point.

          • May

            ‘Doozies’ for ‘doctors’ made me chortle quite delightedly.

            I think I need to know so I can know what really DOES have a treatment (thyroid issues, say), what has a ‘may as well’ treatment (cheapish, not many side-effects, like intralipids) and at what point we can say, oh, fuck THAT for a game of soldiers and give over.

          • g

            Not unreasonable, love, not at all! But my increasing concern with the slow wheels of the NHS leads me to jump up and down that a freeze-all IVF given the excellent survival rates of vitrified embryos if you wish to wait for the Rx vs Rx because it’s not so bad vs vaguely experimental and expensive sort out to avoid ute of doom would not be a bad idea. Time begins to creep, and to the disadvantage of your dear self and H, and I have no faith anymore that the NHS has your best interests at heart in this regard. Am increasingly slightly agitated helpful annoyance from other side of globe who cares very much indeed.

            xx

            g

          • HairyFarmerWifey

            Ehh. I am sat firmly on the fence here, and it’s jabbing me in the bum a bit. I am torn between unease at the experimentality of RPL immunological science, and unease about the fact that SOMETHING is causing RPL, damnit. This is the difficulty with cutting-edge medicine and the patients who have run out of conventional treatment road, and I fully share Geohde’s uncertainty regarding how much faith this science deserves. 20 future years of hindsight would indeed be a useful thing just now. On the one hand – when I asked V Senior Consultant about immunology testing, he didn’t recommend it. On the other hand – if I had the money I know damn well I would do the testing anyway, because the possibility of answers, any answers at all, is enticing beyond measure. I like answers.

            I am in the happy position of knowing that it is possible for me to limp through to within distant sight of the pregnancy finish line without immunology treatment, which consoles me somewhat for not being able to afford it. That, and the fact that I’ve already tried Clexane and have prednisolone still to try. But the idea that I might have a clearly identifiable and treatable problem is Ohhhh, such a mightily beguiling one. So, so very beguiling. I know very well that, had I not had Harry at the stage I did – pregnancy 4 – I would have run the entire testing gauntlet by now, and Bring On the IVIg.

            And yet I can’t rid myself of the notion that because we don’t yet grasp the multiplicity and complexity of the science, the way forward is simply a numbers game: that some of us will have a viable pregnancy every time; some of us will have a viable pregnancy every one in 5 times; and some of us will have a viable pregnancy every 1 in 20 times.

            What I am windily working around to saying is that I would do this testing, too. I would not have necessarily ruled out an interim IVF attempt, as I think the process itself can sometimes be illuminating and occasionally diagnostic, but… dropped CDs bad. Very bad. Understand. And having the test results in front of you is a good place to make future IVF-type decisions from. I am crossing my fingers veeerrry hard that they are not the biological equivalent of humming and hawing, and are as absolutely clear-cut as they can be, one way or another.

          • May

            I hug you. Very much. That is all.

  • manapan

    Did they give you an extra-large pot to get a representative sample or is any amount okay? I mean, you could probably fill the envelopes with your bleeding.

    You stay as far in your little cave as you need to. We’ll take care of the hope part. Hugs!

    • May

      It’s not a HUGE pot. I’m still wondering how to decant a useful-but-not-overwhelming quantity into it without making an almighty mess everywhere. I mean, I have to then hand it to the FED-EX guy. Oy also vey.

      *Retreats gratefully into cave*

      • QoB

        If you can use one (not sure where you are with pelvic pain and Things that One Inserts during periods) I’d recommend a menstrual cup. Available in Boots, decanting of 12ml or less is easily done.

        • May

          Oh! Cleverness! I even own a menstrual cup! I just don’t use it, because my SODDING uterus has concentrated a patch of Extreme Tenderness exactly where the rim of the cup presses, and it’s like having someone pinch a bruise (I can’t put it deeper, because then it won’t ‘seal’ and leaks, and I can’t put it shallower, because then it’s, well, not properly inside, and I can’t sit down (TMI! My work here is done!)). I could, however, put up with it for a couple of hours (less, if Cute Ute is feeling lavish (and she often is. Bloody organ)).

  • TheSheila

    Item 1 is called that because it’s the initials of Dr Expensive’s clinic.

    Item 7 – it floored me too. All you need is enough menstrual blood to turn the tiny amount of saline in the bottom of the pot pink.

    How long before you get the results?

  • Valery Valentina

    O dear. My brain cannot contain all this….
    I know DP and I have been tested for all the scary STDs recently before the DEIVF. If a vial of my blood can possibly show Cute Ute the way I’ll FedEx it straight away. Would contain a wild DNA cocktail, and plenty hormones to boot.
    Else I’ll make tea and we can hold hands.
    Hope, so terrifying, both with and without.

  • a

    Well. That is certainly most thorough. You don’t have to entertain hope until there are test results back. Until then, you can look at this as merely an exercise in humiliation and annoyance, because that’s fun for everyone!

    • May

      Thorough indeed. I feel… peeled naked and scrubbed down with salt, to be honest. Probably a good thing, but currently pink and flustered.

      Humiliation and annoyance is such good blog-fodder, after all!

  • TheSheila

    I think you have the right attitude in wanting to get everything tested before starting down the IVF route. I really, really wish I’d had that attitude before starting myself – ironically, I would have saved an awful lot of money if I’d seen Dr Expensive at the beginning.

    From memory, I think the results can take up to two weeks. Best thing is to ask for them to be sent to you. For some crazy reason, they will only fax or post them to you – I can’t understand why they won’t email them…. sigh…..

    By the way, if you post your results on that site I sent you the link to, the person who wrote that mind blowing FAQ will interpret the results for you, so that you will know what Dr Expensive has to say before you go in. I found that really helpful – it allowed me to get my head around things beforehand.

    Fingers crossed for you.

  • Cathy

    May, I know you don’t dare hope for anything much other than answers but I am allowing myself to hope for more on your behalf

  • Womb For Improvement

    Your description of the first bit of your appointment with Dr Expensive was exactly like mine. Questions being hurled, only half understanding what was being said but desperately trying to absorb it all.

    Now to cross every appendage that the tests show something conclusive and treatable.

    Really, really hoping that this helps. It is high time.

    • May

      I’m glad you saw him first so I knew what to expect and was all braces and everything, so ta hugely for that alone.

  • HairyFarmerWifey

    I howled with a raucous blend of horror, guilty mirth and sympathy when I read of poor H’s in-law complication. Lively gay porn encountered unexpectedly DOES make you lose concentration pro tem, I can testify (Google alerts has recently assiduously introduced me to a cheerful-looking bucolic hairy German farmer with lots of buddies who has cut a hole in his John Deere dungarees just… _there_) and, fancy, just when you’ve got yourself settled down again, along come your in-laws…

    There’s a beautiful comic screenplay waiting to be written here. If only it weren’t all so very un-funny indeed in the long view.

    Dark humour, puerile humour, desperate humour, and not coming out of the Bat Cave, not even for wees. *nods in agreement*

    • May

      I told H at the time the Wankatorium was blog-fodder, and the more horrible the experience, the more TOTALLY it was blog-fodder. He nodded, gamely. He knows what he married.

      Your happy farmer bloke in customised dungarees made me shriek with giggles.

      I have a post-card stuck to the fridge that read ‘this would all be very funny if it wasn’t happening to me’. And that is why I keep it stuck to the fridge.

  • Katie

    I haven’t got much to say except, sorry the cups don’t work for you as they take so much more than duvets or tampons.

    • May

      The other problem I had with cups was, when they did overflow, they went with a Niagara Falls type WHOOOOSH, which was… Awkward. At least tampons give you (well, me) a warning trickle first, giving you (well, me) 30 seconds to get to the lavatory…

  • Tales of woe « Nuts in May

    [...] I also managed to get an envelope of results so far from Dr Expensive’s clinic when I picked up my referral form… our blood was actually shipped off to Chicago for the testing (not sure what to put on the entry form for the ‘have you been to any part of the USA previously’ type question… ‘part of me has’ may get an interesting response), to whit (for reminders what these are see May’s details wot she wrote): [...]

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