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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26 thoughts on “First LIT treatment

  1. You are a trooper for sure! I’ll be thinking about you. You’re right about the US being a little different. We only have a few doctors that will even consider this, which is crazy because I’ve read success stories. Hoping I’ll personally know a fellow blogger success story 🙂 You’ve got this!

  2. Oh my goodness! That sounds crazy painful. I would have been the one screaming. Holy shit! Congratulations on making it through that with such strength and perseverance. Incredible you! We have so much in common in our histories, and you have been such a loving support through my my recent insanity, I am sorry I’ve been a bit MIA. I hope you don’t mind if I ask you some questions, and if these questions have been answered in earlier posts I’ve missed while being wrapped up in my world. If you have the time…I just now noticed that in your history it says: “August 2013 – seeing new clinic that focuses on inefficiencies of lining of the womb. Diagnosed as “super fertile”. Endometrial biopsy performed.” What was their clinical definition of “super fertile”? I have always thought of myself as the same, but no official diagnosis. I also noticed that at least one of your miscarriages was tested to show chromosomal abnormalities, and that you have a history of early losses, low AMH, etc—the early losses being also a sign of chromosome abnormalities. This is the case with me, which is why I am not pursuing these immune therapies—I am going with the research that says my problem has been chromosomal abnormalities, and the tests of three of my embryos also turning up chromosomally abnormal.

    But I don’t want to have my head in the sand about immune therapies, even though about five doctors now have told me it is “quackery” here in the U.S. (they really look down on it!). Have your doctors said there might be a connection between the chromosomal abnormalities and your immune system—I’ve never heard of that but wonder if a case has ever been made for immune problems leading to chromosomal problems? Or do they think you have a combination of chromosomal problems and immune problems?

    It’s all so tricky to parse out, and I hope you don’t mind my asking so many questions. I am utterly confused, exhausted, and trying to consider all options before undergoing another transfer.

    In any case, I really hope this latest therapy proves to be your golden arrow, sweetheart! Go Team!

    • Thanks so much for your support hun. Please don’t ever worry about not commenting, or anything like that. You are in a world of hurt and it is important you do a whole lot of nothing in the coming weeks and months, except look after your little self. But you’re right, we do have a lot in common when it comes to all this crap huh. I am sorry for us both, this sucks.
      Here’s the scoop (sorry it’s a long one):
      So this summer I started seeing New Clinic. They blew me away with how enthusiastic and unconventional they were. They aren’t concerned with clotting disorders or hormone levels or anything other than what’s happening with the lining of the womb. They are the leading research team looking into the concept of “super fertility”. The way they explained it to me was that in a normal womb, over the months of TTC, a fertilised embryo chats to and is screened by the womb lining where it is deemed suitable to be implanted or if not it is discarded. If it is implanted, the embryo will chat with the lining further and the right amount of nourishment will be provided depending on what the embryo needs. In a super fertile womb, women often easily fall pregnant, but the signals between the lining and the embryo don’t occur at the right stage, resulting in the acceptance of any embryo, regardless of its suitability. What is the most interesting to me is that they said most embryos start out as a combination of good and bad chromosomes. I didn’t realise that. In a normal womb, the lining figures out which chromosomes to support so it sorts out any potential issues. In an abnormal womb, the half good half bad embryo won’t be supported properly and the bad chromosomes will be allowed to develop, turning the embryo into a chromosomally abnormal embryo, resulting in miscarriage. This all happens in a very short succinct period of time, CD21-23, when a chromosomal abnormality should never be allowed to implant at all and instead it should result in a normal period a week or so later.
      I find this fascinating because I thought that for sure all our embryos were shit, chromosomally flawed. Not so. Any embryo can go wrong if not supported by the womb lining properly. If that communication occurs out of sync then this can cause late implantation, late BFP, chemical pregnancy, miscarriage, chromosomal abnormalities. Exactly what I seem to be going through on a pretty regular basis. They took one look at my history and flatly stated their 100% confidence that this is my problem. Admittedly they say the research is still so new and that there is a still a lot to learn in terms of treating a super fertile womb. But their approach is to take progesterone from CD21-28 as this helps to synchronize the stages that happen around implantation. The biopsy also, they say is treatment in itself. It helps to reset the lining, a kind of shock to the system.
      Interestingly, the same clinic also focuses on the immune response within the womb lining. Their opinion is that there is a direct correlation between what’s happening in terms of the cells response to support a pregnancy and what’s happening in the dialogue between the embryo and womb lining. So they tested me for NK cells by doing a biospy. It came back high, meaning I’m low on steroids to support a pregnancy. Whether that can cause an embryo to become chromosomally abnormal, I don’t know, but they believe the two issues (super fertility and uNK cells) often go hand in hand. To me, this kind of immunology seems pretty solid, especially as it’s directly related to the lining of the womb, probably the most important area or element to support a pregnancy.
      Anyway, this discovery led us to investigate more into the immunological side of things. So although we believe that the main issue for us is the womb lining / super fertility issue, we have decided to treat any immunological problems as well, as it was explained the immune issues could be contributing to the communication problems, or an inactive response to an embryo in the womb. The immune issues I seem to have all can cause the rejection of an embryo around implantation or afterwards, so that just seemed too much of a coincidence to us. We figured since time is of the essence and felt better to try to cover all the bases. I had become convinced that PGD IVF was the only way to go for us given our chromosomal abnormality issues but the clinic, as well as our recurrent loss clinic and RE, have all suggested that if we can in fact conceive, which we seem to be able to do, then PGD IVF would actually decrease our chances. That it doesn’t actually sort out the womb lining issues either. That I’m less likely to produce a decent amount of eggs on the drugs and that we are better off trying naturally, even with the low AMH situation. So for now we are going to give it our best shot, trying to make the environment as ideal as possible. If it fails then IVF will kick off in March but until then we will give a good go.
      Anyway, sorry for the long winded response hun, I hope it make some sense. I hope it sheds some light on a super murky territory. I think this is all so new and controversial. I really feel like we are guinea pigs in this process, but at least there is some real earnest interest and care being taken to sort out problems like ours. I personally find this shit fascinating. And I still don’t know if we have made the right decision by doing what we are doing but we figure after a few months of trying their protocol, if it doesn’t work then we can move on to the next step.
      It wouldn’t surprise me if this might be an issue for you too hun, honestly it just sounds so familiar. Don’t you think? Hope you’re doing OK, I think about you all the time. You are doing so amazingly well, I hope you are getting moments of peace here and there. Lots of love xx

      Here’s some interesting reading:
      http://www.bbc.co.uk/news/health-23897664
      http://www.livescience.com/22706-super-fertility-recurrent-miscarriages.html
      http://www2.warwick.ac.uk/fac/med/research/reproductive/bru/miscarriageandmolecularsignals/
      And here’s what I wrote about it:
      https://projectsweetpea.wordpress.com/2013/08/30/the-new-clinic-part-1-the-trials-and-tribulations-of-the-super-fertile/
      https://projectsweetpea.wordpress.com/2013/09/01/the-new-clinic-part-2-super-treatment-for-the-super-fertile-female/
      https://projectsweetpea.wordpress.com/2013/09/05/the-new-clinic-part-4-uterine-natural-killer-cells/

      • Woah, wow, you are so generous to write all of this out for me! THANK YOU! I have printed it all out and will read these articles and will ask all of my doctors what they think. I have never heard of this conversation between uterus and chromosomes in the embryo—it is very interesting, this idea that the chromosomal abnormality is not set from the get-go but can come about because of what the uterine lining supports and it’s inability to be selective in that support. I’m curious to read more about how something like this was determined—the science behind it. How can they tell whether the chromosomal abnormality happened at conception (during meiosis, as the current research suggests) or later.

        You are right, the scenarios do line up quite a bit with what I’ve gone through, and I’ve always felt a particular resonance with this “super fertility” idea because I get pregnant easier than a teenager (which is so confusing!!!). I’m overwhelmed but so grateful to you for helping me at least begin to research this avenue. XOXOXO

      • No problem at all hun. Hey if this gets you closer to getting some answers then I will do whatever I can. What they explained to me is that definitely some embryos are abnormal at the get-go, like for instance our last loss that was triploid. Totally unavoidable, completely unrelated to quality of eggs or sperm or environment. It just happens at fertilisation randomly usually when two sperm try to fertilise one egg and an imperfect ratio of chromosomes is developed. It shouldn’t have been implanted and we would have been none the wiser. And the idea that good embryos go wrong without the right support is fascinating. I know there isn’t much out there in the way of studies and research but I’ll ping over anything that might be helpful. Check out the recent research of Jan Brosens and Siobhan Quenby. They are the ones pioneering the research. Fascinating people. An hour with Brosens changed my life. I wonder how this concept would be received in the US, since it is still so new here. It wouldn’t surprise me if it is poo-pooed but it’s worth a shot. Often makes me wonder what route we would have taken had we not been living here right here right now. It’s crazy. And hey, if you’re ever in the UK for a European vacation you can see these guys yourself. One session plus biopsy cost peanuts and the knowledge is worth its weight in gold. Good luck hun xx

  3. I’m so proud of you!!! I believe this treatment may help a lot of other couples who share your challenges, and you are helping to pioneer research. I think the US is ridiculous not to allow LIT! Well done my friend 🙂

    • That is such a sweet thing to say. It’s so hard to know if we’re making the right decision but we both feel ok about it and are hopeful. Who knows what’ll happen but at least we can say we are trying everything! xx

    • Will it?! Interesting! We’ll have to compare notes! It’s kind of a crazy concept but we figure that since it’s been flagged as an issue we’d better address it. I’d hate to always wonder if it might have worked. I’d rather try it all. Thanks for the support hun xx

  4. I have to admit I had no idea such a treatment existed. You both have my admiration for going through this. I find this brings you to the top of my list of most romantic couples on earth! I really really hope this will help get to the end result! Best of luck!!

    • It’s funny, you know, we laugh about how we are now “bound by blood”. Like the modern day version of cutting each others palm and shaking on it. Crazy stuff huh? Thanks so much for your well wishes, so so appreciate that xx

  5. I’ve never heard of this (but I am pretty new to all of the treatment sides). But you are brave and I admire how you are holding nothing back from your efforts to make this happen. Truly believe your hard work will be rewarded. Don’t give up (not that you would! I can tell that you are not that kind of girl!)

  6. Pingback: One step at a time | Project Sweet Pea

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