I received our immunological testing report with complete analysis and had a long, helpful telephone conversation with Dr. Jeffrey Braverman yesterday.
There have been rivers of tears and heaps of those impotent “I want to say the right thing – what is the right thing?” looks from the LP, group and individual hugs and “I’m sorry mommy” from the Miracle Toddler (whose miracle status has grown about as many times as the Grinch’s heart that fateful day when he unstole Christmas from Whoville).
My eyes hurt. My heart hurts. My bank loves me. My employer, too, because they know I will never quit and stay home now.
A. The Reasons
For the sake of anyone who’s been playing along and cares and for anyone who may one day read my blog in hopes of gathering more information about reproductive immunology, haplotypes, HLA mismatches, Natural Killer cell activity, Cytokines and why they all matter, I want to and will share more details about my test results, the analysis and interpretation of them and what it all means. But not today. I need time to write that post (you’ll see why) and time to work through my feelings right now (which have circled the earth at least 2.4 times in the past 18 hours). Please stay tuned.
Non-sequitur: If I am ever in another band, I am going to call it the Angry Cytokines. (Steal this idea and beware, this post and all ideas in it have all rights reserved!)
The brief version to tide you over until the promised post: I am broken. The LP and I are not sufficiently mismatched. My one successful pregnancy created a cell memory that has made the problem worse. It is incredibly unlikely (read: impossible) that I could ever sustain another pregnancy without serious medical intervention (namely, drugs and a lot of blood tests) and equally serious expense. Oh, and I probably have endometriosis. On the good news front, I have no hy-restricing HLAs (meaning my post-live birth recurrent pregnancy loss is not a result of me having developed an immune response to boy babies).
On one hand, this is all very validating. It explains why I’ve gotten sicker with each of the 6 pregnancies we have had and lost since the Miracle Toddler was born and proves that my gut feeling about that was right not “coincidental” as doctors have told me. And while my case is difficult, according to Dr. Braverman it is not untreatable (though he said I could lose another pregnancy on the road to us figuring out how best to treat the various issues).
On the other hand, it has ripped a new hole in my heart and reignited my grieving over all that was genetically programmed to make me very unlikely to have children (without a miracle – which apparently was a one-shot deal after all – or a boat load of medical intervention and expense) and over not finding out any of this sooner. I am having what can be fairly described as a very hard time right now. I know it will get better but for now I am grieving and processing.
B. The Protocol
There will be more on this in the future post I have promised. Meanwhile, the skinny is that Dr. Braverman has recommended:
- Daily injections of Neupogen
- Oral Steroids – likely Prednisone, 10-20 mg daily
- Weekly treatments with Intra-lipids for the first FET (if it fails, then IVIg)
- Daily injections of Lovenox
C. The Problem
Because there has to be at least one, right?
When at the end of our call I asked about a realistic time frame for getting our embryos imported from the West Coast into New York state, Dr. Braverman admitted he has seen it take upward of three months (he’s also seen it take less time). The fact that they are donor egg embryos may make this more complicated.
To avoid any more delay, Dr. Braverman suggested I consider consulting with a reproductive endocrinologist in the same state where our embryos are now hanging out in cryopreservation storage. The trick is that any such doctor must be prepared to follow Braverman’s protocol and prescribe the drugs he instructs, do the testing he requires, etcetera. He’s the boss, in other words. Most doctors will not do this. Our current RE has already said he will not do it.
On our call, Dr. Braverman recommended a doctor he has worked with before, though never with Neupogen among the drugs on the protocol. I called her clinic. She is on sabbatical until November. Of course she is, why wouldn’t she be? The patient coordinator also told me that the clinic does not prescribe medications for other doctors as a rule. With some cajoling she nevertheless agreed to email the RE asking if she will work with Dr. Braverman and promised to get back to me. I wait and see.
I emailed this news to Dr. Braverman and said my current inclination is to try to get the embryos to NY. I called Biogenetics about this and e-mailed them the LP’s test results for infectious disease screening to see if he will need any further tests. I wait and see. This is step one of many to setting this ball in motion.
Meanwhile, Dr. Braverman sent me the name of another doctor in the same state as our embryos. I called her, too, and had to leave a message. I wait and see. (D0 you detect a pattern here?)
I actually burst into tears during one of the times when I was on hold yesterday during the various phone calls that followed my discussion with Dr. Braverman and asked God and the Universe “why?” Why can’t we get a break for once?
I have actually thought: Is this a sign to give up? Or to do one last IVF with my own eggs at Braverman’s clinic instead of moving our DE embryos? (Braverman gave us a 5% chance of success at my age and given my diagnoses so that would be a pretty foolish gamble but it’s hard not to give it some thought. Grief and desperation are powerful motivators.) I have settled on the fact that my luck is crap and when the going gets rough, my luck gets crappier. I should know to expect this by now.
< huge sigh >
To Be Continued…