When Nothing Goes According to Plan: Latest Immune Test Results

Yesterday was a stress-filled day. I discovered I had screwed up at work not once but twice (one much more significant than the other, thankfully, but both affecting other lawyers with whom I have not worked much before so not great for my reputation in either event). That got me down. I was also pulled in a half-dozen different directions, which is always challenging. Then I got an unannounced call from Dr. Braverman, which of course I missed by a millisecond. I knew what that meant before I even returned the call: bad news, particularly since he did not preface the call with an email sending me my report and asking me what time worked to discuss it.

I called back. Finally my December 22, 2014 test results had arrived and his team had completed their analysis and graphing of what they all meant on their own and in the context of where I’ve been and where we hope to go with this pregnancy. In a word, the results were awful. Many of my inflammatory intracellular cytokine levels were the worst they have ever been. Almost all of them are elevated, as are a number of my inflammatory chemokines. All of my Natural Killer cell levels and activity (NK, NKT, NKa) are elevated and I continue to have a notable (and worsening) T1 bias.

In short, my immune system is reacting to this pregnancy with a boatload of inflammation. The diagnosis is significant systemic inflammation and an immune spike at 12.5 weeks (which for those of you who don’t remember is layered upon my last immune spike at 8.5 weeks). The treatment should be IVIg but for reasons discussed below will be more steroids, more frequent Intralipid IV treatments and low-dose aspirin. Oh, and prayers. Heaps of prayers.

This was not the news I was hoping for. Bad didn’t even cut it. Awful made it sound like a root canal. But although I have never had one (yet) my understanding is that a root canal has an end date, a date by which you can expect to have endured sufficient physical and financial discomfort as to be released from purgatory for years to come (at least in relation to the specific tooth in issue). Not so when your immune system fights a pregnancy tooth and nail. Every day until baby is either long gone and a long (read: endless) recovery and grieving process well entrenched or until baby is safely in one’s arms – alive and wriggling – does the terror and torture end.

It would be a gross understatement and trite to say that we have had enough bad news already on our journey to conceive. I guess no one among “the powers that be” is keeping score. Or cares. I do not appreciate being reminded that life’s adventures are often fundamentally “unfair”.

Not that I am suggesting that my and others’ suffering should be spread around among other women struggling to have or grow families. I do not wish on others my experiences or the agonies of those around me with whose suffering I suffer alongside. But I do wish some days that I could catch a break. The litany of bad news becomes exhausting. As do the side effects of the drugs I have to take to address the bad news. Despite what seems like a lousy hand to have been dealt, I would not and do not wish it upon others. At the same time, I would not consider myself human if I did not acknowledge that it sucks and I am unhappy about it.

The call with Dr. Braverman went as well as it could have. I did not break down. I did not even think of crying. I was all business despite the lump in my throat and the fire exploding in my head (why do these calls so often incite a fierce pain in my head?). He repeatedly told and I believe was trying to reassure me that he does not believe that we are at risk of losing this baby right now. I believe him. In his experience, which is considerable, this is very unlikely to happen *right now*.

A silver lining. Thank God. There is one, even now.

For today, Azulito/a should be okay. In future? Well, that’s where things get dodgy again.

The reason for Dr. Braverman’s (and the LP’s and my own) grave concern is that I am at serious risk of developing either or both of intra-uterine growth restriction (IUGR) and preeclampsia (toxemia), each of which is generally considered a serious third-trimester complication though symptoms of preeclampsia can show up in the second trimester. The former poses significant and serious risks to baby; the latter to both baby and mom.

IUGR scares the pants off of me. Preeclampsia scares the pants off of the LP (and it doesn’t give me warm fuzzies either, believe me). Both have been found in scientific studies to have higher rates of occurrence among women who lack Killer Immunoglobulin-like Receptor (KIR) cells, as I do. They are also both more frequent among women with significant systemic inflammation. It sucks to be me, huh?

Back to the treatment protocol. Dr. Braverman wants me to increase my Prednisone from 20 mg (I had finally tapered to that only a few days ago) to 60 mg again for two weeks then stay on 40 mg until a further set of testing is completed, results returned from Reprosource to Dr. B’s team and analysis of them completed. I am also to switch from biweekly to weekly Intralipid IV treatments effective immediately. I was due for the next biweekly treatment this Friday in any event so I am keeping that appointment and adding one every other Friday until further notice.

Returning for a moment to the issue of stress, I recently applied to refinance our home to pay down some of the bills I have incurred in the past two years of trying to bring Azulito/a home. I was feeling pretty good about biting this bullet. I was not expecting a bunch of new immune-treatment-related expenses to crop up. Live and learn.

All of the Intralipid treatments, both medication and payment to the nurse who administers them with her Resident husband at our home, are 100% out-of-pocket as my insurance will cover neither. In total I pay abut $300 CAD per IV which will now amount to a minimum of $1200 per month. Thank goodness all of my other medications have been covered 100% by my insurance. None of the travel to/from New York and none of the testing is insured. Each trip including only airfare and lab expenses to Reprosource have cost me between $1800 and $2400 CAD. I have to go back to NYC at the end of January or very beginning of February (I need to work around my office commitments and a trip I booked to visit my best girl friend so I have not booked a flight yet) to do the next round of immune testing and see where things are at then after weekly Intralipid IVs and two weeks on 60 mg of Prednisone.

This seems like the perfect segue to the ideal treatment protocol for what has been happening with my immune system. Out of the gate in yesterday’s call, Dr. Braverman said he would ordinarily recommend IVIg in this situation notwithstanding the fact that there is no conclusive evidence to establish the likelihood of me responding better to it than Prednisone and Intralipid. My original test results in July indicated that my NK activity was lowered significantly more in the lab test environment with IVIg than with Intralipid (the difference was dramatic as I recall, with a delta of about 20%). Dr. Braverman noted when I asked about that what seems like ages ago that those tests do not necessarily translate into comparable results outside the lab when all of a patient’s immune factors are in play at once.

Dr. Braverman asked me about the logistics of my getting IVIg administered where I live. The chances of that are nil and I told him about my own and My Perfect Breakdown‘s investigations into that reaching the same conclusion. It is simply not going to happen for pregnant patients where we live. Dr. Braverman said he did not understand this but suspected I would say that.

We talked about the logistics and cost of my flying to NYC for IVIg. He noted that I would first need to be tested to ensure I was not allergic. If not, he could arrange for me to receive those treatments through his office at a cost he estimated to be between $4,000 and $5,000 per IV treatment. This would involve me flying to NY throughout the second trimester and for who knows how much longer after that, all with no guarantee of a better result.

Given the logistics, financial considerations, travel stress and risks and where I am in this pregnancy (I am 16 weeks today), Dr. Braverman and I agreed that this was not an ideal option right now. From my perpsective, it is not an option at all. I cannot afford another $20,000 gamble – it’s as simple as that. Dr. Braverman did note that if I were earlier in this pregnancy he would be pushing hard for me to do the IVIg but at almost 16 weeks, when we spoke, he felt that Prednisone, Intralipid and Lovenox was a good second choice. Let’s hope that proves true.

I am trying not to engage any guilt over this decision being largely though not entirely about money. Dr. Braverman said “look, I know you would do anything to keep this baby but some things are simply not practical.” I appreciated that human element and am trying to remind myself, I am doing and have done everything I reasonably can to bring Azulito/a home. I cannot bankrupt myself or my family in the process.

Finally, I also (starting yesterday) resumed taking low-dose (81 mg) aspirin with Dr. B’s agreement. There is medical literature suggesting it can lower the risk of preeclampsia for some women and it is relatively benign otherwise now that we are no longer or not currently worried about bleeding.

In other news, I am getting increasingly concerned about how big I’m growing this early and that I have added more weight by this point in this pregnancy than I did by 27 weeks (the end of the second trimester) in the Miracle Toddler’s pregnancy. Despite the high steroid dose, I had only gained about 5 pounds by my last prenatal appointment in late December and if our bathroom scale is correct I have gained about 8-9 pounds since then. What the heck? I can tell some of that is retained fluid from the steroids but what is up with the rest? Rapid weight gain can mean trouble in the form of increased gestational diabetes and preeclampsia risks. Really? I need more to worry about and more weight to lug around this early? I want to cry!

Enough about me and this very challenging pregnancy. I will end on a positive note by saying I am so incredibly grateful that this baby is inside me and I get to lug it and this extra weight around in the hope of holding wee (but not too wee, please) Azulito/a in my arms in a few more months. Please may that dream come true.

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58 thoughts on “When Nothing Goes According to Plan: Latest Immune Test Results

  1. I was thinking about you and baby… I’m so sorry to hear that you have had a rough couple of weeks… I can’t imagine what your going through but prayers that the Intralipids and other medication helps your immune system.. Little one is giving mommy a hard time. I actually have started my FET cycle today and I’m also a little concerned but taking it one day at a time. I was to possibly do the IVIG at our clinic but will be doing the intralipds instead. Hopefully my horome levels are good to start the process.. Sending hugs to you both!! 🙏🙏

      • Thank you so much for your kind words. I agree terrifying is correct.. Now they’re telling me that I could have surged and maybe not be able to do transfer this month. Hoping that its still a go and my lining is good too. Not sure what to think. 🙈

        • Today my lining was at 1.7 and now they’re saying that my LH level went down and my estrogen went up. The only thing I’m taking is baby aspirin as its a natural cycle with progesterone after transfer. The roller coaster begins. I think tomorrow’s blood work will tell me if its a go or not. Not sure what it will be.

        • Oh boy. This sounds stressful. Please stay in touch if you feel up to it. I will keep you in my thoughts and prayers and hope things progress and pan out this cycle despite the strange start.

        • Sadly today it was confirmed that the cycle has been cancelled. My hormones levels were going down and the RE wanted everything to be perfect feel so gutted and disappointed…😩😩😢

        • Oh Milena I am so sorry. I would be crushed too. Yet when it is so important to succeed I would want things to be perfect so logically I would want to wait – with a heavy heart and some tears and frustration!

        • Thank you so much.. That’s exactly how I feel.. Hope you and baby are doing well.. Today will be a better day.. One day at a time. Enjoy your weekend!!

  2. Oh, sweetie, I’m so sorry it’s not going the way you’d hoped. I’m sorry we won’t see more of you in NYC, but your reasons make perfect sense. Crossing fingers (and everything else) for you and tiny A. Sending hugs and good luck!

  3. Oh girl. I am so sorry for all the stress and the worries that you have to face. Nobody wants a phone call from their doctor out of the blue. It’s really so unfair that for some, keeping a baby is such a monumental task. You’re trying to do the best for your family and the baby. I pray that the baby continues to grow well and your body responds to Dr. B’s treatment well. Keeping you in my thoughts. ❤

  4. Just when you managed to taper down eh? I’m sorry that you can’t have a “regular” pregnancy. It is totally unfair, and I understand how that feels, to constantly be dealt a shitty hand. I’m glad though, that you seem to be getting good care from Dr. B. I really like the constant checking of your levels. It’s something that my RE won’t do. They’re just happy to blindly give intralipids every two weeks for a total of 3 infusions, and then be done with you. I hope the increase in prednisone makes a world of difference. Thinking of you.

  5. I am so sorry to read of these complications. I know you are insanely strong and curagous, so if anyone can come out on top after being delt these cards it’s you. I am thinking of and praying for you and ypur family. Much Love!

  6. My heart broke as I read this. Simple, all of this is clearly the last thing in the world you need right now. All the added complications just add more stress and anxiety into your life which is not going to help anything for you or LP or the little one. I wish you could have a regular pregnancy, but I know that’s just not going to happen. But please know there are so many of us loving you and cheering you on from the sidelines. You know I am here for you in anyway I can be, call or email anytime.

    • Thank you so much. You are right. It is not going to happen and I had to admit that to myself and Dr. B yesterday. Most importantly to myself. As you noted yourself recently, slaps in the face from reality can suck but what do we do other than face them and try to live on. I truly appreciate all of the support. Thank you so much.

  7. Faith AND Worry can not coexist in the same space. It is the job of the enemy to keep you unfocused, distracted and doubtful. God can do any and everything He sees fit to do. All He is asking for is for you to keep your eyes focused on Him and His power.

    I don’t care what the report says, God’s got this ! You enjoy that baby ! You enjoy this amazing time with your partner. You speak those things that are not into being. You relax and enjoy the weight gain ! Every pregnancy is different. Once my niece is here, that will be an awesome opportunity for you and the LP to do couples workout at the gym everyday.

    No matter what curveball the enemy throws your way, you, in faith, dismiss it and trust in Almighty God’s power. Trust that this is YOUR time and negativity, doubt, and mistrust have NO place to dwell in your happy space. You fake it till you make it ! You are almost 1/2 way there… in fact, if you are doing a c-section at 38 wks like they do for us advanced maternal age mommy’s you have one more week to 1/2 way !! Well look at God! Celebrate that you, Mommy, have made it 1/2 way thru and you believe and you fight for the next 17 weeks.

    The devil is a liar! You are going to believe in the impossible because that word simply breaks down what Azulita/o is saying to you, I’m Possible!!!!!

    Pick your head up, dust your behind off, put on your pink boxing gloves and get back in that ring and come out victorious!!

    Xoxo

    • Amen to that powerful message of faith hope and love! Great advice by which to live and love each of the precious beings in my life. This morning the Miracle Toddler rubbed my baby belly and said “I love baby!” I need to cling to those moments of lucidity and pure, unadulterated love

  8. So sorry you got such bad news! Hoping the changes help and that you and baby stay healthy and safe. Glad Dr.B is being so proactive.

  9. So sorry that you are dealing with these complications. It really is so very unfair. I will never understand why it is so easy for some and yet so difficult for others. I will be keeping you in my thoughts and wishing you light and strength as you move forward with the treatments. ❤

    • Thank you so much for the wishes and keeping us in your thoughts. You too have endured horribly unfairness. It is impossible to understand which I think is part of the sense of unfairness. I truly hope your adventures with misery are at an end. You deserve goodness to come your way and stay put.

  10. Oh I hate to hear this news 😦 I’m so frustrated for you. FWIW I think the IL + Pred is the way to go and you should try not to feel guilty for not doing the IVIG (though guilt is inevitable). I am worried about Pre-E for you. The drugs and the pregnancy (plus immune isdues) are taxing your liver. You couldn’t do a “detox” right now, but is there something you can take to help support your liver? I used to use milk thistle and Bragg’s apple cider vinegar, and it would help when I was on the pred and feeling polluted.
    Of course the most important thing is to quell the inflammation. You’ve done it before so you can do it again. I’m thinking of you and here when you need me. XOXO

    • Thanks MLACS. My acupuncturist has had me on Reishi (capsules) and Dandelion Root (tea) since December for my liver. Milk Thistle is not recommended in pregnancy but neither is Dandelion root or Reishi so i was wondering about it. I (and my two acupuncturists) arw worried about my liver too given my high risk with Cholestasis reoccurring (50-70% chance of reoccurrence) too and the preeclampsia risk. I will ask the TCMD about milk thistle. I took it until transfer in this FET as well but haven’t since then. Thank you so much for your support, suggestions and concern. How much Braggs did you take? I have that at home already and can ask my TCMD about it too.

      • The milk thistle helps the most–it’s what bodybuilders take to support their liver while they are on extreme amounts of (illegal) steroids. I used alcohol-free, liquid drops, sublingually.
        I’m not sure about the amount of the Braggs–I’ve taken it both as a “shot” and also as a drink (maybe a 1/4 cup mixed with hot water, like a tonic). I would consult google on this, but the good thing is there’s nothing wrong with taking it while pregnant. Also it’s more effective on the kidneys than the liver but of course both organs aid in detox. Hence why I took both milk thistle & the Bragg’s. Hang in there sweets. XOXO

  11. I am so very sorry to hear this. I’ve been thinking about you and wondering how you were. I am glad that you have a new plan and I will be sending lots of hugs, light, and healing thoughts to you and Azulito/a. ❤

  12. I am sorry that the results came back with stressful news. I will hold you and baby in my prayers and in my heart. It is so unfair that this stress and worry continues to follow you. I wish that your immune system would stop acting like a brat and that you can enjoy the peace of mind and assurance that Azulito/a is going to be just fine. You deserve that and I wish and hope that for you. Listen up immune system: stop acting up!! You have overcome so very much to get to this stage and I know you will rise above this, too. Love and light to you, cycle sis. xo

    • Thank you. I have come to the realization this week that I need to just accept that there is very little likelihood of my immune system cooperating in this pregnancy (or ever again, possibly). If that becomes my operating assumption perhaps I can make peace with myself and my body (including my immune system) so that I stop getting blind-sided by these devastating reports on things going from bad to worse. The endless worry is weighing on me in ways I cannot even express. I wish we could afford a short vacation. I am beyond worn out.

  13. Just shooting you all of the positive juju I’ve got (whatever that’s worth, coming from someone who is has also admittedly being whacked with the unfair stick from all ends for many years now). You’re carrying an awful weight of anxiety right now, but re-reading this post the good news is still there hidden behind the suck-iness. you have Dr. Braverman in your corner and you’re being incredibly well monitored. He’s got you on a very good protocol, one that realistically WILL protect you and Azulito/a. You’ll be drinking your awful sugar mixture soon enough to see if GD is really something you need to worry about. You are halfway there and IUGR and Pre-e aren’t technically on the table yet. One day and one step at a time.

    • Thank you for the juju and your level-headed perspective on not getting ahead of myself. Of course today I had my first stabbing upper right quadrant pain and immediately the panic set in (URQ pain is a preeclampsia hallmark). Too early for that, I am letting it go and monitoring if it happens again. Sigh… Never a dull moment, is there?

  14. First of all, I somehow managed to accidentally unfollow you AGAIN. Ughhhh. So I am just catching up now. I am so sorry that you got awful test results. And as someone who has had countless root canals (I seriously can’t remember how many, but definitely in the teens somewhere), your assessment of them is correct–there is a definite end date to the madness. What you are going through just sounds freaking brutal. I want so, so much for everything to go smoothly for you. This shit is just not fair. You can be sure I will be sending lots of prayers your way. And please try not to feel guilty about your decision. You are right, you have done and are doing EVERYTHING you can. What you would have to do to get IVIg sounds totally insane–not only would you bankrupt yourself, but I’m pretty sure you would lose your mind in the process. You made the right decision! Sending hugs your way…

    • Thank you so incredibly much for your kind words and support and above all the prayers. I am trying not to feel guilty. We all have limits. Hugs back at you, this is a tough time for you too. I wish I had a magic wand.

      PS: I hate when WordPress unfollows blogs without telling me too!

  15. Just wanted to check in with you to come upon this crappy news. These bad numbers aren’t the whole story and while great numbers are so reassuring, as you know, those also don’t guarantee anything anyway. So do hang onto your enduring hope and love for this baby because that’s as real as it gets. Can I help out with one of your flights? I probably have enough AA miles for a trip to NYC if they fly from your airport — you can email me via gmail — nuboarder

    • Oh my goodness, I am so glad to hear from you! How are you and the little one doing? Thank you for checking in and for the travel offer. I had a credit from a cancelled flight so it hasn’t cost me any “new” money and I very thankfully stay with friends so this trip will not be as financially painful as the last few.

  16. I honestly can’t imagine all the emotions you are experiencing. Actually, I feel quite guilty for complaining about my heartburn earlier this morning, as my issues are meaningless compared to yours. Please know I’m continuing to pray for you.

  17. I hope and pray all goes with this pregnancy. I totally understand your frustration and pain. I have had 5 miscarriages now and I have seen several RE. They have done a billion tests on me all of which are normal. No one can tell us why.. except try again you had ‘bad luck’ crap! We just had our first consult with Dr B… he is suggesting to do all of the immune tests. Hope things work our for us with him. I will be praying that you have your miracle baby in your arms soon 🙂 All the best!!!

  18. I hope this message finds you and your baby healthy. Continue the fight and I hope you win. I am also Dr. B patient and have not gotten my BFP yet but have similar issues (KIR AA, HLA matching, and NKs). You mentioned that the labs tell if intrallipids or IVIG are better. Can you explain this a little better as I don’t know where to look for this in my labs?

    • Thank you for writing. The results showing effects of lab testing with IVIg and Intralipid were on my initial complete testing ordered by Dr. B. Did you do that? If so did you get your report in the last 9-12 months? I got a copy of my raw data results through Kim and I believe it was on there. Dr B and others do not believe those results are necessarily reliable in terms of predicting how patients will respond to either treatment because a Petri dish or test tube is very different from an immune system in a living body with its myriad variables. I agree with that logic so at best it is a guide by which one might experiment with both or either treatments depending on lab results. Are you cycling soon? I’m wishing you all the best!

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