Plan B, Version 10.0

When the LP and I first started trying to have a child, I thought I did everything right and though I knew there could be hiccups, I never expected to be hoping for pregnancy number 10 to have 2 living children.  How did this happen?

If you ask Western Medicine, the answer up until the current donor-egg miscarriage has been “old eggs” because:

  • I’m of “advanced maternal age” – meaning over 35;
  • The repeat pregnancy loss (RPL) panel of tests revealed no clotting or immune disorders recognized by Western Medicine as being correlated with recurrent pregnancy loss;
  • The karyotype testing done on me and the LP produced normal results;
  • The worries I had that my immune system is getting progressively more “activated” and “distressed” over the time since we began our most recent run of 6 pregnancy losses since early 2013 were not substantiated and it was not fathomable that I could be reacting to my body’s own hormones.

Yesterday, that changed. 

Yesterday, the LP and I had a very lengthy telephone conference with our current RE.  He reviewed in detail my loss history (again – in case we missed anything before and because my prior clinic’s records were less detailed than one would like in this regard) and then he went over possible reasons why our first donor-egg IVF cycle (a natural frozen-embryo transfer) ended this way.  Then he reviewed the option to do possible further testing (for natural killer or NKa cells and for T-helper cells) and the possible experimental treatment options for diagnosed and sub-clinical immune conditions that could cause a pregnancy loss pattern.  He told us what we already know: 

  • My case is hard to diagnose because I do not have clear markers of a condition Western Medicine currently has a reliable means of testing and accurately diagnosing;
  • My loss history is quite varied, but the more recent losses are similar regardless of whether they involve my own eggs or the egg (we’ve only transferred one) from a young, proven, healthy donor;
  • The chance of this embryo having had chromosomal abnormalities and that being the cause of this loss is only about 25% – 35%, which would be a reasonable explanation (“bad luck”) if I had no prior loss history or if this loss did not suggest a failure late in the implantation and subsequent fetal and placental development process; and
  • Given my loss history, this loss is statistically more likely to point to some underlying, undiagnosed (and possibly not diagnosable) issue.

Finally, in yesterday’s conversation, the RE  said it made sense that I am observing changes in my allergic responses to things during the luteal phase of my cycle, when women’s immune systems are suppressed/altered by the progesterone our bodies produce (or that we’re given in a medicated cycle).  It felt good to be heard.  It felt good to have a Western doctor acknowledge the observation powers and expertise about my body that *I* bring to the table.  Thanks, doc.

We talked about the flaws with the natural killer (NKa) cells testing protocol.  Essentially, the test measures blood levels and function of NKa cells in response to intralipid therapy, not uterine NKa cells and how they might react to such treatment.  Apples and oranges.  Not particularly illuminating, in other words.  I knew that, too, but the LP did not so it was important to review.  I agreed with the RE that undergoing that testing, if we were prepared to adopt a treatment protocol that would incorporate treatment of positive results (i.e., assuming I would test positive), then the NKa testing need not be done.

We also talked about the pros and cons of short-term steroid use to lull a woman’s immune system into accepting implantation and allowing fetal development to proceed when a subclinical or undiagnosed immune response would otherwise prevent that development from continuing.  In short, this is what we are suspecting is at play in my case, though we have no test results to confirm that. 

The RE raised serious concerns about long-term steroid use and risks to the baby even though, as he noted, several of his colleagues in the field or reproductive medicine prescribe long-term steroids before and after embryo transfer and during early pregnancy for women with diagnosed (and undiagnosed, in some cases) immunological conditions.  I had these concerns already myself, knowing first-hand some of the very dangerous side effects long-term steriod use can have (my Mom was in a study about just this after developing premature osteoporosis requiring multiple joint replacements following long-term steroid use). 

The RE also mentioned, however, that he treated a woman with a similar pattern of early pregnancy losses (similar to all 3 of my 2014 losses and 2 of my 3 losses in 2013) using a protocol that included a short course of steroids before/after embryo transfer that was successful and resulted in a live birth (Amen for that Mama!).  I have (mild, controlled) asthma and have had pneumonia more than once, meaning I have personal experience with short-course corticosteroid use and its benefits.  Both of my parents and my one living brother also had/have asthma and I’ve seen both short- and long-term steriod use and the pros and cons of each as I grew up and to this day.  In short, I’m no stranger to the use of corticosteroids, what’s good about it and what is not so great.  As applied to making humans, it makes me nervous if used during the pregnancy’s early development, but not so nervous used during the time at which my uterus seems to be killing our babies.

We also talked about IVIg, with which I’m uncomfortable (and so is the RE) and blood thinners (Lovenox or Clexane if you’re in the UK and low-dose aspirin).  The RE felt that clotting does not appear to be my issue given my gynecological, RPL and one live birth history.  On that basis, he did not recommend using any of those treatments if we decide to go ahead with another transfer using one or both of our two remaining embryos.  I can’t really disagree, plus my Mom had a severe allergy to salicylates so I’ve always stayed away from them on doctor’s advice when I was young, so I figured this was not a bad experimental treatment to reject for now.  If anyone has had a history like mine and success using Lovenox or similar meds, I would truly love to hear from you – please consider emailing me if you’d like a private chat: spirit.baby.please.come.home@gmail.com

The RE was confident that a natural FET is still the right choice for me.  He was happy with my lining, which would have been somewhere between 8 and 9 mm at ovulation (it was 7.6 mm two days before) and insisted that current research shows anything over 6 mm will work and over 7 mm with a trilaminar pattern (mine had that well before ovulation) is sufficient for successful implantation and live birth after heartbeat is detected at 6-8 weeks.  I was a little nervous about this but I’ll be working extra hard on getting my lining in tip-top shape if (when?) we go ahead with another transfer now that I’ve learned things I did not know about how to do that before our last transfer. 

The last topic we discussed was “one or two?”  The RE said his recommendation is always one, but also noted that he would support whatever decision we made and would welcome discussion if we have questions or want more information to help us decide.  We said that although the LP is opposed to twins for a slew of reasons, I am not opposed to having living twins, but I am fearful of complications with a twin pregnancy for me given my history of cholestasis with our own successful pregnancy.  I was told after that pregnancy that my risk of developing cholestasis in future pregnancies was 50-70%.  I also understand that cholestasis is more common in twin pregnancies.  It’s something to think about because the greatest risk of having it is that your baby/ies can die in utero so they deliveries are often scheduled before babies’ due dates (I had an emergency induction at 37 weeks the same day I was diagnosed with cholestasis as my liver enzyme levels were ridiculously high and they were worried about the effect on baby).

The decision about whether to transfer one or two therefore remains unmade.  We will think about it.

We also have to decide whether to proceed with another transfer and if so, when.  I expect that we will do at least one more transfer because I can’t imagine how I would live with myself later if I discarded these two embryos without at least one more whole-hearted attempt.  As for when, we are thinking of cycling in either July or August.

This month will be dedicated to healing and trying to rebuild my hope and some means of having faith that I can actually carry another healthy baby to term (or close enough).  That’s no small order, frankly.  It is hard to wish for a 10th pregnancy when you’re in the process of losing number 9.  I’ve got my work cut out for me. 

Please wish me luck.  Lord knows, I need it.

 

 

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27 thoughts on “Plan B, Version 10.0

  1. I am *so glad* that you felt heard and that your doctor took the time to listen and address each of your concerns. What a complicated situation! I am wishing you peace during all of your decisions and good luck!

  2. That is a lot to take in, but I’m glad you felt heard. It sounds like you have a lot to consider. I’m sending you all the strength I have. know the days and weeks between now and and when you decided to try again will not be easy. Praying you get all the answers you need and I am absolutely wishing you so much luck hon!

    • It is a lot to take in but thankfully my OCD kicked in and I researched what the Dr. raised before the conversation and had kind of come to my own conclusions but wanted his advice. In the end his advice was pretty much what I had considered I would be willing to do if I am willing to do this again. The only unknown now really is when and if we will call it quits after this so transfer both or be prepared for two more losses instead and just transfer one next time and leave one for a third transfer if the next one fails, too. That’s too much for me to consider right now. I’m glad the Dr. was of the same view as us about taking time to heal emotionally (he did say there’s no physical reason to wait necessarily) so I’m not in a rush to start over or make any final decisions this month.

      It’s just hard to have faith that this will ever work… I just feel like my body is broken and because we don’t know why this isn’t working, we will just keep failing. I need time to get past that way of thinking.

      Thank you for all of the support and warmth. I’m sending so many prayers your way this week as well. Your story gives me hope. I want this for you so much.

      • I don’t blame you for being scared hon. I would have such a hard time make this decision too. I hope time of healing brings you some peace and clarity. Big hug.

        Thanks for your prayers too hon. My next scan is tomorrow and I’m feeling really scared again. Ugh, why does this all have to be so hard for us?!

        • Yes I’m specifically keeping you in my prayers for that ultrasound tomorrow. I’m so sorry you’re fearful but I’d be the same in your shoes. Love and peace to you.

  3. Wow so much to take in at this time but I am so glad that you were “heard”. I hope that this month can be that time of recharge for you. Seriously tough choices with your two frosties on ice. Please do something extremely nice for yourself this month. Sharing strength and love!!

  4. See, this is what I worry about in my case (only I wonder if my body is disallowing implantation altogether)! Here’s some things:
    1. Low dose steroids for 12 weeks won’t affect you much long-term if you: take extra calcium & vitamin D, eat high protein/low carb (low glycemic), and also supplement with glutamine (which is the most abundant amino acid in your body and steroids will rob it from your muscles–unless you supplement). I know, I’ve taken them as long as 9 months at a time and in much higher doses (40mg+). The hormones you keep flooding yourself with and subsequent losses are (in my opinion) just as, if not moreso, detrimental to your health.
    2. F*ck IVIG. You can use Intralipids, which are cheap and easy to get–why don’t more RE’s use them instead of suggesting IVIG, which is expensive, hard to get, and potentially contaminated?! I will consider Intralipids myself.
    3. There are several bloggers I know of that have used immune protocols for RPL, including:
    Project Sweetpea. (pregnant)
    Eat, Love, Procreate. (pregnant)
    Beloved Burnt Toast. (pregnant)
    Lisa B TTC. (pregnant with 2nd)
    I Can Do This. (pregnant)
    All of these women used steroids. Lisa & I Can Do This both saw Dr. Kwak Kim (Reproductive Immunologist in Chicago) and used intralipids after like 7+ miscarriages each.
    Hope this helps babe. And yeah, I wouldn’t bother with further immune testing, I would just apply the protocol. XOXO

    • Thanks, MLACS. I’m not so much worried about longer term corticosteroid use for me. There is good reason to be concerned about how it could affect baby/ies and there is no reliable long-term controlled studies of that (or even much in the way of reliable colloquial evidence since their use is *still* considered experimental and is not sanctioned by the Am. Coll. of Rep. Med. et al). The first 8 weeks is a pretty critical time and I’m just a little anxious about using steroids throughout that whole period since they cross the placenta (unlike heparin or its family of drugs – which RE didn’t recommend anyway and I can’t see an application for in my case at this point). If you don’t have soy or egg allergies, I don’t know why anyone would go with IVIg over intralipids, frankly.

      To be candid, we’ve spent so much money getting to this point, I’m not up for travelling even further afield and starting over with a RI. I’m emotionally close to dying inside here and I’m hopeful I can walk away from this ledge and back to a place of “hear me roar” for our next attempt, but I just don’t know if I have more than one such attempt in me. I just don’t know.

      Thanks for your support and the references, that’s really helpful and sweet of you. XOXO

      • I know figuring this next step out while going through your CP must be so exhausting. I don’t want to go spend the time/money at Dr. Kwak’s either, but I might consider it.
        As for steroids, prednisone crosses placenta and has low risk for heart issues (holes in the heart) and can increase likelihood of gestational diabetes. Many docs use dexamethasone, because it supposedly does not cross the placenta (or less so). As a chronically ill person trying to have a baby, I have read plenty of scholarly articles and spoken to specialists from Cedars Sinai to Barnes Jewish–believe me, I wouldn’t put my baby at risk (the risk is negligible, as even a heart deformity can be corrected and studies I read reported 3% of babies may have them, which is only 2% higher than ‘normal’ pregnancies) so please don’t say steroids are not studied or widely used–they are common in pregnancy (particularly for women with autoimmune disease–like me) albeit undesirable. Otherwise, I wouldn’t discuss them.
        But to each their own.
        I dunno what else to say except I wish you peace and clarity for these decisions you have before you. *hugs* XO

        • Ugh. Sorry. I meant long term effects on children not just the risks in uterine or at birth. I’ve personally known two babies with heart defects requiring surgery at and shortly after birth so maybe my perspective on that risk is skewed by that. And my broader concern is what we don’t know yet about effects longer term if any. It took decades of long term prednisone use in adults before ill effects were correlated. Perhaps you have found long term studies on this in the childhood development context, I haven’t but respect that you’ve spent more time on that than I have. Didn’t mean to offend. I tried to own my own biases – family who’ve had unnecessary health problems directly attributable to long term use of corticosteroids. That’s where I’m coming from. Anyway thanks for sharing and sorry for misspeaking. Sometimes I think it may be easier not to respond to comments. Damn internet. Sigh.

  5. I’m wishing you a quick resolution now and luck later this summer. That sounds like my timeline too. Maybe we will cycle at the same time. The decision of how many embryos to transfer is always a tough one as we always want to maximize the chances of success, and you have to do what’s right for you. But I would suggest you consider sticking with one. I lost my twins due to premature labor and there was no “reason” for it. Twin pregnancies really are riskier and I’d hate to see anything like that happen to you, once you do get pregnant with one that sticks. That’s just my 2 cents… whatever you chose will be right for you I’m sure.

  6. Thank you so much for the good wishes and your 2 cents. I am with you – I have said that if someone could guarantee if I put back 2, we’d only end up with one and I’d carry close to or to term, I’d do it in a heartbeat (because we chose donation for research for any leftover embies and I’d frankly rather baby go to a grave in my womb than to research, truth be told). But there are no such guarantees and my history makes me nervous about twins, too.

    I’m so glad to hear you’re trying again. I will hope and pray we’re on a similar schedule and get to celebrate births together next year. It’s hard for me to even say that, it seems like such a pipe dream today.

  7. I can’t even imagine how frustrating all of this is for you. I don’t have your history and I haven’t been on a lot of different drugs or proticals, but I have seen a myriad of different cases on the baby center thread I belong to. It’s California Conceptions which is a double donor program in CA. They have very high success rates and seem to have a lot of ladies on different treatments. I’m just writing you because there may be a similar story which might be helpful. I am wishing you an incredible amount of luck and I hope your next transfer is the one. I did two unsuccessful donor transfers before the third one hopefully (fingers crossed) has stuck. Hugs to you and yours.

    • Thank you so much, Shannon. I’m familiar with California Conceptions (we’re just using DE at this point so didn’t look into it but I know a couple who did). Is the BC group called Cali Conceptions? I’ll try to find it.

      Everyone needs to do what’s best for them. I have my own anxieties about certain drugs because of personal/family experience but I think at this point I’ve signed on for risks I would have never considered before having this many losses, all unexplained except for the recent immune issue “hunch”.

      I really appreciate you writing – thank you and good luck on your own path.

  8. This really lifted my spirits, I am so happy that your RE was able to engage in such a productive conversation. May I suggest drinking Red Raspberry Leaf Tea to thicken your uterine lining (we Asherman’s gals swear by it). Oh, and I may also be cycling in late-summer.

    • Yay – there will be a small posse of us cycling together!

      Thanks so much for the suggestion. I’ve been drinking RRL tea whenever not in the luteal phase of TTC cycles for 2 years. I was also using a blend from WishGarden with red clover (for lining) and nettles (for inflamation) as well as RRL but I’m almost out. I’d recommend that as well – I think the name is Fertility Tea.

  9. This post was very informative. Although, I have never suffered from a miscarriage or failed IVF/FET cycle, it’s nice to have some advice to fall back on. This RE sounds wonderful and I’m hoping our new RE will be of similar character. Good luck my friend. I’m convinced there is another spirit baby waiting in the wings to come home to you.

    • Thank you. I hope you never have more experience in all of this, good grief! I’m sorry for what you’re going through and appreciate you thinking of me during this lousy time. Thanks for the hugs, they’re always welcomed!

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