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.