Tales of woe

We have… well ‘news’ sounds far too exciting… ‘results’ sounds too hopeful… ‘a shit-storm of wtf, I told you sos and up yours NHS’ probably encapsulates it.

We are both in a bit of shell-shock I think. May doesn’t want to get angry again, so has asked me to step up to the mark and write a post although she has given me some of her draft rantings to draw on. Let me start by describing the context of our lives this stuff has landed… May reports:

“Work is stupid and full of stupid people and I don’t like it. I actually reported a colleague to their line-manager the other day, for being an incompetent fuck-wit whose work I was just about that sick of redoing for them (this is, of course, a situation that has been going on for over a year. Rage). I then spent hours sorting out a hideous mess of misfiling and laziness, and had to file another complaint about protocols being ignored. Then I found out I am The Subject Of Gossip in the tea-room, with camps dividing into those who are convinced I’m pregnant, and those who think I have cancer. Then a superior entity told me off for not doing something, and when I said plaintively that no one had told me about it, she pointed out she’d announced it at the meeting. The meeting I was off sick for, did she mean? Yes! Well, I was off sick, and she hadn’t circulated the minutes yet (two weeks later. Hmph). Nevertheless, I should have known, and I needed to go and do it, and bugger everything else in my in-tray, because I should have scheduled the time to do this thing I had no way of knowing I was supposed to be doing. Worst of all, I defended a colleague’s decision to a student, even though I was a bit uneasy about this at the time as I thought she was being ridiculously draconian. I double-checked today, and I realised she was not merely being a jobsworth but had actively screwed up and then not been honest with me in order to elicit my support. I so very much wish now I’d gone with my first instinct of cheerfully telling her not to be such a whistle-dick and to do as the student asked.”

While May is in a “work-induced state of advanced temper”, I, H the implacable, have also been pissed on from on high at work. The Big Project I have spent months working on, has been summarily shelved, and I have been presented with a whole new Big Project with entirely different software and parameters and skill-sets and told, basically, to lump it. Not only that, but show leadership for my team and be enthusiastic for this new Big Project and take charge (even though it’s being run outside of my control) and make sure it succeeds… It’s been a couple of weeks of mayhem and personal anguish as I started to see the project crumble around the edges as if on a cliff overhang, but powerless to stop it then plunge into the ravine.

Meanwhile, my counsellor has gone on holiday for a few weeks, just as I thought I was getting somewhere. May and I have therefore been needling and sulking and bitching and snapping and getting on each other’s tits in a rather distressing manner.

May puts it better than I ever could:

This is H and May, people! Star couple and all-around loved-up snuggle-bunnies of the decade! And I’m all ‘Take your Goddamn issues to the counsellor, because I am stressed to death here and I have no patience with you or anyone or anything!’ and H is all ‘You’re stressed? What am I, chopped liver? And, you may remember, the counsellor is on sodding holiday,’ and I’m all ‘cry me a river’ and he’s all ‘eat my shorts.’ Our sex-life is parlous. Funny that.

In which mood, I had to slink back to the wankatorium, so they could do DNA fragmentation test, with May in the back-ground wailing:

‘but we haven’t had sex for days! And now we can’t for days! I’m going to ovulate to spite you, so there’. Which helped. Even more so as we weren’t going to worry about conceiving until we’d got all our test results back and spoken to Dr Expensive again, so I am being so exceedingly rational and not in the least bit deranged-harpy-on-hormones.

I was shown to a different room this time and dared to hope that my in-laws wouldn’t be looking over my shoulder this time. Alas, while the picture was different it was definitely of the same area – I had the wherewithal to take a picture on my phone this time to show May – I think she was shocked how like their landscape of abode it was, but still laughed [Because I am a cow - May]. A new set of magazines to peruse – and with May not sitting in the waiting room upstairs I felt slightly more relaxed about having a look. It was going fine until I encountered two pages stuck together, which made me rapidly cast it all aside and go and wash my hands again and start from scratch.

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):

Item: No STDs (yay/*yawn*)

Item: TH1:TH2 intracellular cytokine ratios TNF-a 26.6 (good range 13.2 – 30.6) IFN-g 16.8 (good range 5.8 – 20.5) big tick next to the figures, so assume that’s OK. However, it’s at the high end and they have a tendency to increase, so would need to be monitored (expensive).

Item: DQ Alpha Genotype – May: 0201,0301; H: 0102,0201 – so we have a 25% chance of embryo looking like May’s DNA to her antibodies and therefore being confused for a possible unwanted cancer or something and attacked. This is probably quite common and shouldn’t be a problem in its own right, but this could also be a factor in other test results and also, as May said, causing increasing sensitivity issues.

Item: NK Assay (% Killed) Panel
These should be below 15%:
50:1:  14.6% – this is borderline, but it does come down with IVIG and ILs (see NK assay with Intralipid, below).
25:1:  8.8%
12.5:1:  4.5%
IgG conc 12.5 50:1:  8.1%
IgG conc 12.5 25:1:  8.0%
IgG conc 6.25 50:1:  11.3%
IgG conc 6.25 25:1:  8.1%

% CD3:  83.9% (should be between 60% and 85%)
% CD19:  7.1% (should be between 2% and 12%)
% CD56:  8.6% (ditto)
% of CD19+cells, CD5+:  14.1% * – this should be below 10%, so is starting to point to auto-immune issues *eye-rolls all round* May’s family is rife with auto-immune issues, so not surprising.

NK assay w/Intralipid:
50:1 w/Intralipid 1.5 mg/ml:  10.3% – someone drew a large arrow pointing at this number on the print-out. As you can see, intralipid treatment lowers the NK kill rate, which I think is a Good Thing?.
25:1: w/Intralipid 1.5 mg/ml:  5.4%

Item: Leukocyte Antibody Detection
Flowcytometry:  Negative
[T-cells] IgM+:  1.0%
[T-cells] IgG+:  17.2%
[B-cells] IgM+:  53.8%
[B-cells] IgG+:  19.0%

Here is the kicker – these should be above 30%, preferably above 50%. With so many low figures (although the first two are less important the most important is the last) it looks like the Leukocyte Immunization Therapy (LIT) will be order of the day, controversial and expensive we are.

So, in summary it looks like May and H are a little too familiar and friendly, our embryos are so loved and familiar they’re squished out of existence [We shall have to call the next embryo 'George' - May] and May’s system is getting more and more sensitive to the ‘tricksy’ little things. So I said:”Your immune system is just like you, argumentative and hot tempered.” To which May retorted: “Well, even your sperm are fucking passive aggressive!”

Conclusion: a microcosm of our relationship plays out in May’s uterus every month.

And then we laughed like drains, and I made cocktails.

Where does this leave us? Adrift at the moment, not really sure what to make of it all. My instinct, of course, is to run away. We’re still waiting for thyroid and DNA fragmentation before going back to see Dr Expensive. If you see two dazed people looking marooned, crestfallen, slightly bitter then approach carefully, they have been known to snarl.

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15 responses to “Tales of woe

  • Womb For Improvement

    Ooof what a shit storm with work and results conspiring against you. Um ..onwards and upwards?!

  • Sheila

    A much cheaper and less controversial alternative to LIT is lots of intralipids, which also helps with the DQ alpha and the NKs. Combined with steroids and a hefty dose of clexane from the start of the cycle and things might work out? Consider whether trying naturally on a mix of Dr Expensive prescribed steroids / intralipids / clexane (I’m guessing he will put you on at least 40mg if not 60mg from the start of a cycle?) might work?

    If you do decide to go down the IVF route, it might be worth trying WFIs clinic who did these things without too much hassle and include them as standard in their protocols? Saves you having to pay for Dr Expensive too?

    Re 25% match – I had that too. I didn’t treat it specifically – the above combo worked instead….

    Meanwhile, boooooo for work angst.

  • mrs spock

    Rebecca at Which Way To BabI think there were 6 lost pregnancies prior to it, and the pregnancy with LIT was successful. Daughter born alive and well: http://whichwaytobaby.blogspot.com/.

  • QoB

    Jeez, this biology stuff is complicated. I hope you get to talk through these results with the doctor and other knowledgeable people soon and that there are ways to forge ahead.

  • thalia

    Work stress sounds dreadful.
    I struggle with the immunity stuff, as every thing I ever read on it showed the science around it was a real mess, and some of the tests downright misleading (as my favourite article once said: measuring the presence of antibodies in the blood and hypothesising about their concentration in the uterus is akin to measuring the number of taxis on the M25 and then drawing conclusions about the number of red buses in trafalgar square). So I’m not going to yay or nay but just say i hope you get the right treatment with the right docs and that this finally blooming well works for you.

  • a

    How strange is it that 7 years ago, the only lab testing for NK was in Chicago…and 7 years later no one else is doing it. Oh well – looks like maybe there is a path of inquiry to follow?

    Sorry to hear about the work drama – H, I feel your pain. I have a passive aggressive white board at work where I post all my feeling about people rearranging my priorities and accepting new rush jobs with no good reason. Fortunately, my boss visits our area infrequently and just noticed the postings the other day. And May – I’m sorry for the coworker annoyance. I am fortunate to work mostly independently, but when others start playing games…whew! I get very irritated. I hope you all get some peace on that front. Or H’s counsellor comes back from vacation posthaste!

  • longdistanceinfertility

    Ok, I’ll fully admit this is a bit over my head, by I am very glad that you’re getting some useful lab results, and very much hoping this doctor is ready to be super-proactive to reign in whatever crazy cells may be running amok. Also, work stress is awful.

    In entirely unrelated news, I am planning a visit to London in a few weeks and would love to meet up for tea. Will explain more in an e-mail if you’ll just write with your e-mail address. Am idiot and can’t find it on your blog.

  • wombattwo

    OK, you might not like this comment, I give you fair warning…

    It all seems a bit woolly to me, to be honest, and I’d want to know what the evidence base is behind it. The major thing that occurs it what do these results ACTUALLY mean? In terms of fertility and infertility. I think these results are difficult to interpret for anybody, and their actual significance is something that is perhaps debated even between specialists.

    Questions I would want answering are:

    Have they actually done these tests on fertile couples, or couples without recurrent miscarriages and compared the results? I’d be surprised if nobody had some slightly skewed results in one area or another.

    From what I understand Leukocyte Antibodies increase during pregnancy, so how comparable is a non-pregnant result to a pregnant result?

    If it is that good, why isn’t everybody doing it? And yes, there are NHS funding issues, but in a world where let’s face it, most people end up paying for IVF cycles themselves…?

    Does this chap also work in the NHS, if so, where, what does he do there?

    I suppose I’m a little suspicious, to be honest, that these highly expensive tests and treatment are recommended and I’d want to know what the benefit to them is – how many couples have benefitted, out of how many?

    Good luck to you both, I really do hope you find something that works for you, whatever that is.

  • persnickety

    There’s an infertility board game in there somewhere, but in order to understand I think i need that Phd in Biology I forgot to pick up.

    Hope all thes tests leads to an actual plan of attack, and success

  • Betty M

    I confess I am more on the sceptic end where these tests and treatments are concerned. Maybe it’s just because these tests and treatments are relatively new and in 20 years time everyone will be doing them but maybe not. Some of the things offered are well accepted but some aren’t. I would be mighty suspicious of something where people in the US are having to go to Mexico to get it as described in one part of the FF immune posts you linked to.

    All that apart I would really love something to work for you guys and soon. And also that all work fuckery could exit stage left as soon as possible.

  • Katie

    Have to say, I’m also naturally sceptical. So many people told us we should do IVF with PGS – but then I read the research. And we’re very glad we saved the money.

  • L.

    I don’t know anything about this topic so I won’t even pretend to venture an opinion of my own on the merits of potential treatments. But I see that now you are in a position of looking at some somewhat obscure data, albeit values that do seem off normal, and trying to figure out what to do? What does it mean?

    I guess this seems one tick better than an “everything’s normal and therefore we have no idea whatsoever why things suck so much” situation; it gives you *something* to sink your teeth into even if you’re not quite sure what. It sounds like second-opinion territory for sure, but I hope you come out of it with some next steps forward.

    I’m sorry to hear about the work suck. Would love for you guys to catch a break sooner rather than later.

  • Irons in the fire « Nuts in May

    [...] – So, Dr Expensive’s results so far. I feel very much like a woman with a can-opener, a tin labelled ‘best quality [...]

  • g

    I am on the skeptic end, and I hate to write that. It is far more reassuring to Do Tests and Treat Stuff. It is harder to know what this signifies (most are normal and those that are not are in the minory, and, as prior posters have pointed out clinical sigificance is hard to infer). Mostly, this shit is all Hard,

    xx

    g

  • Plan, wait, J? Are we at J now? | Nuts in May

    […] are not sky-high, and back in July 2012 while we were being Thoroughly Poked by Dr Expensive, we found that Intralipids alone massively reduced their activity (no idea why H is burbling about IVIG in that post – we didn’t have any results […]

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