When Things Go from Sad to Worse

* pregnancy and fear of pregnancy loss mentioned*

Yesterday afternoon I spoke with Dr. Braverman, my Reproductive Immunologist. The test results from my immune monitoring were back and had been analyzed. He emailed me my report and called me at the same time so I hadn’t even seen the report when, after the usual pleasantries he said “unfortunately, your levels [of inflammatory cytokines and chemokines] are back up”. In addition, my white blood count (WBC) dropped by over 40% despite my daily Neupogen injections. Not good.

I was blown away. Like a true fool, I somehow believed that since I had a “textbook perfect” response to the immune protocol during my last immune monitoring period, the same or similar would be true now. Of course I should have know better.

After all, I’d been having histamine reactions for days. But that has happened in the days leading up to each Intralipid treatment since we cut them back from weekly to biweekly after my embryo transfer. And I had emailed Dr. B about that very issue because this time it was much worse than ever before.

My original question in yesterday’s email to Dr. Braverman was whether I could stay on the immune meds until after what right now is intended to be the last monitoring panel of bloodwork is drawn, results are back and my next report prepared because I was fearful of a histamine response and the possibility that I lack certain chemicals that occur in people with healthy immune systems to counteract the histamines when they go wacky. That isn’t a test that’s currently available according to Dr. B’s website so naturally given my history of histamine reactions it causes me some worry. Histamine issues can result in second trimester losses. I don’t need or want to add that to my resume.

Little did I know things have already gone to hell in a hand basket with my immune system. The elevated levels (and reduced WBC?) could be the result of any of all of the following, according to Dr. Braverman:

1. I have antibodies to the LP’s sperm (we’ve never tested this – why the heck not? I wanted to ask yesterday but didn’t as I was in listening mode and, well, in shock).

2. I have Hy-restricting HLA genes for which no tests have yet been developed.

3. The natural lowering of hCG that occurs around 8 weeks removes the ameliorative effect hCG has on the immune system and consequently my immune system or suspected endometriosis (or both) took this opportunity to go wild.

4. My immune system has developed an adaptive response to the immune medications and is once again dead set on destroying yet another life or at least messing with pregnancy #10.

In case it isn’t obvious (and I can see how it wouldn’t be, this stuff is not a walk in the park to understand, I know) all of these options suck.

My protocol has therefore been changed as follows:

A. Increase Neupogen from 1 mcg/kg to 1.5 mcg/kg. In other words, a 50% increase.

B. Increase Prednisone from 20 mg per day to 40 mg per day, taken in 20 mg doses in the morning and evening (a 100% increase).

I started the increased levels last night. I also had another Intralipid infusion last night.

In case you missed my saying so yesterday, it been a very long and rough week and a bit. Yesterday’s report and call have scared the pants off of me. I am astonished at how quickly things can go from textbook perfect to atrocious and ominous.

On the upside, Dr. Braverman tried to reassure me that the risk of us losing this baby has gone down after week 8 (I’m almost 10.5 weeks now) is reduced considerably in my case. There are no guarantees, of course. But he said his biggest objective in aggressively treating these changes now is to help me avoid serious complications later in pregnancy. I meant to circle back to that part of our conversation later in the call but I forgot. He told me that after reading the report he knew I would have more questions and invited me to email in response to which he would either email or call me at my preference. I have more questions, including this one, but I am going to sit with this for a few more days and gather my thoughts and reassure myself that my feet are still firmly planted on the ground.

If there is one overarching thing I have come to appreciate on this journey and my foray into reproductive immunology, it is this. Comprehensive testing and monitoring during pregnancy matters. In my case, it matters a great deal. For those of you who may not share my views or always appreciate my pushy encouragements to you, please understand that *this is my context*. This is the place from which I write. It is a place where the unexpected can come to pass very swiftly and without much warning. This place is one without certainty or security in which playing ostrich has meant certain death and almost certainly would again.

From this place, I look forward and hope, pray, plead with the powers that be to let Azulito/a live. Please, little spirit baby, please keep chugging along on your long journey home. In the big picture, you are almost there. Please stay. We love you so.


41 thoughts on “When Things Go from Sad to Worse

  1. I am so glad you are so on top of your treatment. You are doing absolutely everything you can and more. Thinking of you often during such a hard time. Hugs.

  2. Oh sugars! I am so sorry. You know I am praying for you and this precious life that I am believing is going to grow healthy and strong. Sending you lots of hugs! Xo

  3. Oh jeez! That is a lot to take in, especially when you’re already feeling so scared! Did your doppler come in yet? I really hope it helps ease your mind a little until the next ultrasound. Staying hopeful my friend and believing little Azulito is hanging in there. Sending you prayers!

  4. I am glad that you are getting the comprehensive testing throughout your pregnancy (and wish that we could get our RE to requisition it too), and that you got the prednisone thing sorted out. I hope it does the trick in getting you to the safe zone. Any idea what happens during the 2nd and 3rd trimesters that renders the immune system no longer a threat?

    • My immune system could still be a threat in the second and third trimesters (if untreated now it most certainly would be according to Dr. B) so I don’t really know what would make those stages less worrisome for other immune patients.

      • I agree. My clinic seems to think that I won’t need intralipids after week 6, nor other meds after week 18. Said that I’d be in the clear by then. Not sure that I agree with their stance, and think that it comes from a negligent place.

        • I agree with your thinking. If they aren’t testing how can they know? Do you feel any different after the Intralipid treatments? I wish they would continue those for you, they are largely benign if done every two weeks if you aren’t sensitive to any of the ingredients. In my case they help though I know from testing that IVIg would be much more effective. Cost is an issue though… I truly hope this embryo of yours makes it and that you can get the supports you need.

  5. No. No. No. I refuse to accept that anything will go wrong because I believe so strongly that this will be successful for you. I’m dang mad that you’re having to face this, it’s simply unfair. I’m so sorry you have this stressful news heaped upon all the stresses in your life. I’m hoping and praying the adjusted medications bring your levels back down to normal. You were on my mind a lot yesterday and I will continue to keep you close to my heart. Play nice, immune system! That’s an order!

  6. I know how hard this time was for me a few months ago, without all of the knowledge that you have. And while knowledge is power, for me, it creates mounting anxiety. Be good to yourself. Sending strong vibes to you and A. Keep swimming. xo

  7. I was afraid to read this, but I am relieved to hear that baby is still growing and your meds are being adjusted. I feel this need to tell you to place your hands on your womb and imagine that bright blue colour you always see when you think of Azulito. Keep the connection strong. Let the love and the baby continue to grow and thrive. I will be thinking of you.

  8. I got a little freaked out when i read the heading to this post. I’m glad to hear that Azulito/a is still doign what he/she should be doing. I’m keeping you in my prayers and hoping that your worst fears are not realized any time during the next 8 months! This has been a tough week for you, but hang on honey. You have a lot of love and support and strength here to hold your hand during this journey.

    • Thank you so much. I think i had convinced myself that as long as we got through the first and early second trimesters things would be safer. The call with Dr. B Friday made me realize that my immune issues create serious third trimester risks. I knew that in theory but it didnt hit home until he raised it as the basis for being really aggressive now. We are waiting for this week’s ultrasound right now… I feel much more anxious than at the last one – ignorance can sometimes be a blessing, clearly. One day at a time is my new mantra!

  9. I’m so sorry you have this new crop of information to worry about. I really wish all of our well wishes could make it better. You are in good hands, though, and there is something to be said for that. Thinking of you!

  10. So sorry you are having this roller coaster ride during pregnancy. I am hoping that by this time next year, we will chat and laugh about all the drama and remind Azulita how indebted she will always be to Mommy for enduring 🙂 Keeping you lifted and covered in prayer! Xoxo

  11. Oh no, oh no! I am upset to read this news. I was hoping hard that you’d have 100% smooth sailing the entire way. I am glad that you’re on top of your treatment, though, and that it’s being adjusted. Hopefully that will be exactly what you guys need. Sending good vibes to you and A. HUGS!

    • Thanks. I too had hoped for smoother seas. I don’t know why I thought it might actually happen. History has taught me better, but we all let hope get the better of us sometimes. And maybe that is not such a bad thing?

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