First LIT treatment

Well we went for it. Yesterday I had £1200 of the Hubs white blood cells pumped into my forearms. The first of a few to come over the next few months.

Despite the controversy we opted in.

In the UK Lymphocyte Immunisation Therapy, otherwise known as paternal white blood cell immunisation, doesn’t carry the same dark cloud as it does in the US. According to our immunologist it carries even less risk when using the husband’s blood as opposed to an anonymous donor. Blood products are blood products and they always pose a risk but I’m told this process is handled delicately and efficiently to ensure the highest quality.

LIT is used for a few reasons but in my case it was suggested when I had a shockingly low Leukocyte Antibody Detection, a test that determines if I produce enough antibodies to protect an embryo from rejection and stimulate growth of the placenta. As the Hubs puts it, I’m allergic to him, or not allergic to him enough.

The treatment should result in the formation of blocking antibodies in my body, allowing the protection of an embryo in the womb.

My concerns were all related to how this would affect my immune system in the long run, rather than the risks involved with introducing another’s blood product into my body. I know my husband is healthy. What I don’t know is how the introduction of his white blood cells impacts my system overall. Our immunologist assures me that I won’t be on it long term, and that we have another session coming up in a few weeks followed by another one should we be lucky enough to get another chance at conceiving again. And that it won’t damage or cause issues with my immune system.

The procedure itself was interesting. The Hubs had to be screened for HIV, Hep B and C and other infectious diseases two days before the procedure. Even though he’s been screened for these before, he had to be tested immediately before the procedure to minimise any risk to me. They say that really I’m at a risk of all of these things if he was carrying them anyway since I tend to have sex with him, but heck why take any chances. Good news is he’s clean.

Two days later we arrived at the immunologist’s office at 8am where they withdrew half a pint of blood from the Hubs using what looked like a chopstick instead of a needle. His grimace said it all. Looks like we’re both taking one for Team Sweet Pea.

We are told to go to the pharmacy, buy a tube of topical anaesthetic and put the whole thing on both undersides of my forearms at least an hour before the procedure. Wrap then in cling film and come back at 3pm. Seems rather unclinical but we do as we’re told.

We clumsily eject the contents of the tube onto my arms while perched in the middle of a busy Pret a Manger smiling at all the inquisitive, awkward glances. Wrap my arms in cling film which attracted a whole other set of glances and off we went back to the office. By then, they will have sent the blood to a specialist lab, where it was washed, treated and white blood cells extracted. The white blood cells fill a syringe that will be injected under my skin on the underside of both my forearms.

As they prepare my forearms, I ask, what can I expect, as everything I’ve read indicates that it’s excruciating. They tell me like it’s painful, like being stung by a wasp 15 times in each arm. Hmm, compared to an HSG I can handle that. I have a high tolerance for pain, especially when I know we may potentially gain from it. What will happen, I ask. They tell me I will get hot, flushed and probably will swell up on the arms. It will become itchy, scratchy, sore and might spread into a rash but after a few days it will cool down. What are the immediate risks, I ask again. Anaphylaxis, fainting, but more than likely I’ll just get a little allergic, feel stuffed up, swell up a little and have some irritation. Ok let’s do this.

Good news is the topical anaesthetic worked in some areas. The bad news is it didn’t work everywhere. Thirty wasp stings is an understatement. It hurt like a motherfucker. I watched as the skin bubbled and bruised as a little bit of liquid filled each hole. I was cooed and encouraged by the lovely nurses, reassured by the Hubs and it was over within a few minutes. I didn’t scream at the top of my lungs like the last lady. I didn’t faint like the woman last week. I just held the Hubs hand in such a way I may have cut off all circulation, judging by the way he shook it afterwards. But it’s done. And I have a nasty rash on my arms to prove it.

I’ve got to say though that’s it’s nice for once to have a procedure that abuses another part of my body, instead of my poor old miserable uterus. She thanks me for that.

Today all I feel is sore, hot and a bit unwell. It feels irritated and sore and itchy. I took a few antihistamines to stop the stuffiness which worked. Now we go back within 2 – 3 weeks for the next session. Apparently I’ll be sensitised to that one, and it will hurt less. Then we go back in early pregnancy if we are lucky enough to get that far.

Either way, I’m ready if this gets Team Sweet Pea closer to the prize. Despite the risks we are throwing everything at this. I feel like it’s where we are right now. That might change in the future but today it’s full steam ahead.

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Immunology schmimmunology

We’ve been to see our reproductive immunologist to fully discuss our test results. From an immunological perspective it turns out there are a few more issues than we initially thought.

Here are the bullet points for his diagnosis :

• Raised NK cells in general blood stream
• Raised NK cells in the womb lining
• Leukocyte Antibody Detection panel too low

Here’s what he’s suggesting as treatment :

• 25mg Prednisolone daily from CD7 to subdue the NK cells
• 40 mg Clexane daily from CD7 to encourage the right environment for implantation
• Lymphocyte immunisation therapy LIT (an injection of the Hubs white blood cells under my skin) for my womb to produce antibodies to protect the embryo from rejection and stimulate growth of the placenta. 2x injections 3 weeks apart starting on 21 October, with top up shots every six moths afterwards
• Intralipid infusion (a soy & egg yolk based drip that’s intravenously injected into my bloodstream) once a month, to subdue the NK cells and to stimulate the immune system to remove danger signals that can lead to pregnancy loss

Any of you out there doing this? I’m feeling slightly daunted. Feels like a lot of weird shit is about to be thrust into my body. Except for the LIT. I weirdly find the concept of injecting his blood into mine kind of sweet. Like we are bound by some invisible commonality. Sharing blood is as fundamental as it gets right? And baby makes three? We’ll see…

We didn’t even tell the RI about the AMH situation. I don’t think I could’ve handled much more on that particular afternoon. But also the Hubs is so dismissive of it. I’m trying to put my AMH out of my head for a little while as I wrap my head around the rest. But it’s the dark shadow in the corner that doesn’t go away. For now it can stay there until I’m ready to deal.

We do what we gotta do. Bring on the moonface, the belly bruises, the allergic reactions, the hours spent in a doctors office on an intravenous drip. I’ll do all this like an automaton and then face that bitch AMH. We know how many thousands of other ladies are doing this and so much more everyday if it means the get to have their sweet pea at long last.

Bring it. I’m ready.

Can of worms

So much has gone on in the last week. I don’t know where to start. Today I’ll try to recap the latest from all the recent investigations.

Test results are back. Here’s what’s been done, or retaken in the last five weeks to investigate the reasons for our multiple losses:

uNK cells via biopsy
Leukocyte Antibody Detection
HLA DQ Alpha Antigens
NK Assay Panel
TH1/TH2 Cytokine Ratio
MTHFR
LFT Liver Function test
AMH
FSH
LH
Prolactin
Thyroid Antibodies
Thyroid function
Anti phospholipid antibodies APA
Karyotyping (still waiting for that one)

Many of these came back normal. Four did not.

1) Endometrial biopsy came back borderline abnormal. uNK cells present, not super present, but enough to possibly cause issues. Treatment so far will begin with progesterone only, no steroids yet which I am thankful for. But steroids might be introduced after BFP, if that ever happens.

2) My anti cardiolipin antibodies in the APA screen came back positive. These produce an autoimmune response that prevents the fusion of cells that help the embryo to attach firmly and grow deeply into the womb lining. I’ve been tested for this before and it was negative so will be tested a third time to confirm it. In the meantime this will be treated with Clexane injections at BFP in addition to the 150mg aspirin for the increased clot strength I already have. This could also explain our RPL.

3) Leukocyte antibody detection panel also came back abnormal. This is when the mother’s body has an inadequate response to the growing embryo and will be unable to produce antibodies that protect the embryo from rejection and stimulate growth of the placenta. We haven’t had a chance to discuss this with our reproductive immunologist yet but we know from previous discussions with him that the treatment is LIT. White blood cells from Hubs are injected into my body to get it to produce blocking antibodies that will protect the embryo.

These three results are manageable. We can work with these. Sadly though they are all dependent on a BFP. But the next one is the one that could prevent us from dealing with the first three at all.

4) AMH. It plummeted from 12.9 to 2.1. In 8 months. For those of you in North America that’s 1.8 to .29. A shocking drop. This is most definitely NOT good. And we don’t know why. I spent much of that time pregnant, how can that drop so quickly? How can that number reflect my egg reserve if no eggs were spent for over four of those months? At this rate they’ll be no egg reserve by the end of this year. I am terrified. After hearing the news a complete meltdown of crying, destroying and dry heaving took place.

Unfortunately my GP who delivered the news doesn’t really understand the role AMH plays in fertility. She quite bluntly said I’m likely no longer a contender for IVF at all, especially since we won’t be able to start it until January (ie the drop is so rapid that next year will be too late). We’ve been at the top of the NHS IVF list for months but we put it off 1) because we were already pregnant and 2) because we were hopeful since I could get pregnant that IVF wouldn’t be necessary.

How could I go from being ‘super fertile’ to having nearly no viable eggs left in such a short time?

I frantically researched AMH when I found out, as I did back in January when a consultant flippantly said donor eggs was our only route (we had two BFPs since that day BTW) and its role in infertility and came up with some really conflicting results, particularly when women are able to conceive naturally. Our consultant at the RPL clinic advised us previously that AMH wasn’t that important if we can conceieve naturally and that drugs from IVF might actually do more damage to than good to someone of my RPL history.

The fertility experts we’ve seen previously, back when getting knocked up wasn’t happening, thought they could work with my AMH as it was in January. But they also sided with the RPL clinic, thinking it probably isn’t suited to someone like me. My GP thinks they will be even less willing to work with my new number now. We’ll find out on the 22nd October when we have our next appointment with them. In the meantime we are considering going to a private IVF clinic so we don’t have to wait. There is still so much I don’t know or understand.

My new Chinese Medicine practitioner (love her) was completely dismissive of the AMH results. She tells me that the hormone, released by the antral follicles, is only as good as the follicles are in any given cycle. Given that I recently miscarried she believes the whole system is still recovering and the hormones are out of whack and if we test again in a few months things will likely improve. Even though western medicine suggests AMH can never improve she has seen it in her clients. She stressed what is important is the number of follicles, more than the hormone reading. I seem to have a decent number of follicles but no one knows whether they’re any good or not.

Right now we are waiting for further appointments with the various four professional groups. Feeling like we are swimming in opinions and information. Not knowing what’s real, what’s important, what to do next. It’s hard deciding who to believe. The RPL clinic? The fertility clinic? The reproductive immunologist? The Traditional Chinese Medicine practitioner? I have no freaking clue who to trust and I have a hard time hearing my gut at the moment. I don’t feel like I have the full picture.

This just feels like a cruel joke. It seems not only does my womb make a habit of losing babies but now the very essence of my ability to produce proper eggs at all is in doubt too. And to top it off, the beating heart of our last loss, the one who seemed to beat the RPL, AMH and age odds, stopped because of an independent fluke abnormality. F U universe, F U.