Hello and Ed

a few posts ago i mentioned NK cells.  we went forward with the test for this and it came back positive.  however, that may or may not mean anything.  the research on NK cell activity is very new and very full of holes.  it strongly indicates that NK cells may be the cause of repeated early miscarriages (pre-heartbeat), which is what i seem to be stuck with.  however, there is also research (just as full of holes) that pokes holes in the already holey miscarriage research.  in short, there’s nothing very solid - just some rather convincing theories.

let me back up.  it is known (as much as anything is known, anyhow) that autoimmune disorders can cause infertility, because (grossly oversimplified) the immune systems of women with autoimmune disorders tend to be overreactive to everything, including pregnancy.  there are very interesting statistics floating around about this, such as the extremely high percentage of women who start showing clinical symptoms of autoimmune disorders around 40 years of age who also just happen to have had lots of trouble getting pregnant or sustaining pregnancy, or were never able to get pregnant at all.

now, normally, someone trying to conceive AND testing positive for an autoimmune disorder and/or showing symptoms (not always the same thing - i test positive but have almost no symptoms) would be given prednisone or heparin before the transfer and throughout the pregnancy to keep the immune system at bay.  this is routine, and works.  BUT…  not with NK cells.  elevated NK cell activity has to be treated with IVIg (intravenous immunoglobulin [wiki]) infusions.  i would have to have one infusion a week before they transfer the embryo, and another infusion a week after the transfer.  i could potentially have to have them every three weeks for the next 5 months from then.  each infusion is somewhere around $7,500, and there is little chance that insurance will cover it.  we don’t have an exact price yet, and there is a very slim chance that some of them at least would be covered, but i’m not getting my hopes up.  that said, the side effects are very rare, although some of them are pretty scary, but they are well within what i consider acceptable risk.

something else we found interesting is that the doctor was very careful to be sure that we understood that as far as he is concerned, there is no proof that this works.  on the other hand, he was also very adamant that if we try again, we should do this.  when ed asked him if he’d change his approach if we did this and it worked, he said no, because the research is not conclusive enough.  so, he feels that this is a hail mary, but he feels that we should try it.

we’re in the frustrating position of having four embryos ready to use, and knowing that there’s very little chance that i’ll be able to maintain a pregnancy with any of them.

we could opt to try it again with prednisone, since that might be enough to do the trick, but we’d always know that we’d taken the easy way out, and we’d have no one to blame but ourselves if it didn’t work.  or we could drop another $25,000 trying the IVIg infusion, then lose the pregnancy for some other random, perfectly normal reason.  the transfer itself is about $3,000, so i suppose we could argue that we could do two transfers (two embryos each) for about $6,000 and know that we’d used up the embryos, and assume that the research on NK cells is undependable.  but then we’re just making excuses, and putting me through another two miscarriages just to use up embryos.

there is no good answer.  if insurance will cover the infusions, we will absolutely try again with that protocol.  if not, i don’t know what we’ll do.

we’ve been keeping quiet about a lot of stuff lately because it wasn’t just our news to share, and because we weren’t sure where it was going to go, but i suppose we can share our story now.

over the last 3-1/2 months, starting right about the middle of december, we’ve had a lot of stuff going on.  i’m not really ready to get into the long version, but the short version is that in mid-december we heard that a close friend of my aunt was pregnant and considering giving her baby up for adoption.  a day or so after christmas, and after dealing with some rough spots surrounding the whole situation, we made it known to my aunt that we would like to be considered.  a day or two after that, we met the mother for dinner (she was in WA visiting family) and the three of us really clicked.  she still hadn’t completely decided on adoption at that point, but she wanted to meet us and get a feel for who we were, in the hopes that this would help her decide.

the three of us, especially she and i, began a beautiful, amazing friendship via phone and e-mail.  ed and i were so taken with her: she is bright, funny, warm, beautiful, open, and just has a wonderful spirit.  from the minute we dropped her off after that dinner, we both knew that we’d be equally happy whether she kept the baby or decided to bless us with allowing us to adopt.  we felt incredibly honored to even be considered.  she would be a wonderful mother, but circumstances were not what she wanted for the child, and eventually, she decided to move forward with adoption, with us as the parents.

we began the attorney process, which was doubly complex because she does not live in WA, and started our homestudy process.  she began working with the father to help him decide what he wanted to do (he didn’t really want to parent, but probably didn’t like that she had started an adoption process without him).  i started researching the possibility of breastfeeding an adopted baby, and the three of us exchanged many long e-mails and phone calls, discussing everything from parenting to whether or not ed and i would try IVF concurrently.

the most incredible part of the whole process was the openness we all felt to one another.  there was never any discussion of making choices together - it just happened, and seemed like the most natural thing in the world.  at one point, our attorney pressed ed and i to come to a decision on what sort of ongoing relationship we’d want with the mother, so that she could then deliver that to the mother and convince her to go along with it; we refused, and told her that we’d worked together on this so far and we intended to keep it that way.  we wanted to honor the mother in every way we could, and we felt an immense amount of love and respect for her, and there was no way we would inject that sort of divisiveness into what had so far been a beautiful, amazing process.  instead, we talked to the mother and made it clear to her that we’d welcome her into our lives and we wanted to be completely open with the child, and we would love for her to be a part of that child’s life.

over the last week, we’d started to see the father come around.  while we would not have an absolute until three days after the birth (she was due in july), it looked like everything was falling into place, so we were beginning to prepare.  we finally started sharing the news with a few people, and asked for references for the homestudy.  a friend had offered us a bassinet she was no longer using, and we had decided to buy it.   i was going to spend some time this weekend researching lactation specialists so that i could find out what i needed to do to breastfeed.  we were starting to believe it.

friday evening, on our way home, my cell phone rang, and i saw the mother’s name come up on my caller ID.  as soon as i heard her voice, i knew something was wrong.  she was clearly upset, and when i asked what was the matter, she told me that she’d lost the baby.

i’m still not sure how i should feel.  she loved that baby dearly, and she is clearly devastated.  my heart is absolutely breaking for her.  and at the same time, i could tell that she felt somehow guilty, which happens in many miscarriages, as the mother wonders what she did to cause it, but in this case, i think she felt like she’d let us down.  but we care so much for her, and first and foremost we’re grieving with her and for her.  of course we also lost what had become our biggest hope so far, but we’re oddly separated from it and it feels somewhat selfish to grieve for ourselves.

we had a laundry list of things that could go wrong: the father could refuse; or worse, he could do nothing, which would force us to return 30 days later and possibly give the baby back; she could change her mind during the first 72 hours after the birth, in which case we would be ecstatic for her (she had asked us, if the father refused the adoption and she kept the baby, if we would be godparents); but she was far enough along that the possibility of losing the baby had gone out of our minds.  as i was telling our counselor on friday, just before we got that call, with IVF there are landmines everywhere, but at least you know where they may turn up, but with adoption, the landmines are unpredictable and seem to come out of nowhere.

i don’t know where we’ll all go from here.  i wish i could be there with her, and i hope she knows how much love we have for her.  we’ve become very close in many ways, and i certainly hope that we can continue that friendship.  as for ed and i, we’re taking some time to collect ourselves and sit with this before we decide what to do next, if anything.  we’ve talked very briefly about trying to adopt again, but to be honest this has seriously shaken my willingness to take that path.  we’ve talked about another round of IVF, since we have four unused embryos left.  we’ve even talked about just letting it go and enjoying what we have.

the one thing that i know for certain is that i have been immensely humbled by this process, and i can think of no greater gift that i could receive than hearing someone tell me that they would like me to raise their child.  we’ve learned that we could absolutely adopt and give that child every bit as much love as we’d give any biological child.  as i told the mother, even a biological child of ours would be artificially manipulated by the IVF process, so i saw no difference.

there’s a lot more to this story, but that’s the basic overview.  maybe i’ll fill it out later on, but right now i just wanted everyone to know why we’ve been so silent lately.

i’d been looking for something to get me moving forward and motivated to get some exercise, and i found it.  the garmin forerunner 405 is so neat - and gives all sorts of cool data.  and it makes pretty maps.  here’s the data from last night’s rowing class:

gives heart rate superimposed over speed (also available is elevation; choose two of those three to overlay).  the elevation was a bit funky when i went under a bridge.  it shows me 127′ under water for 90 seconds at one point.  other than that, awesome.  it’s a watch-type thing (which is where the gps part is) which recieves data from a heart rate monitor (which is pretty comfortable to wear) and there’s a little USB stick that recives data from the watch when you get home, and automatically loads the data to the website (or locally installed software - your choice).  pretty awesome.

also available is a bike thing which attaches to the frame and wheel and gives cadence of pedaling (if i undersatnd it correctly), and a foot pod which does the same for running/walking. 

at $350, it’s pretty pricey, but awfully cool.

one note for garmin - don’t limit me to “running”, “walking”, “biking”, and “other”.  let me fill in “rowing” for the type of exercise!

the short version is that we had our cycle review on jan 7th and there were a few interesting things that came out of it.  first, my estrogen levels went up very quickly, so much that i never even made it to the normal dosage level (they start it low and bring it up to 4 patches changed every 2 days, but i never made it past three at a time); next time - if we have a next time - they’d slow that down.  apparently too rapid of a rise in that can make it hard for the body to sustain a pregnancy.

in addition, the doc continues to discuss autoimmune problems.  he wants to do another round of more targeted tests before we try again, looking for more specific things in the autoimmune family.  he also wants to look at NK cell levels/activity.  NK cells are pretty interesting: they’re white blood cells, but unlike most attack cells, NK cells don’t care what they’re attacking.  they don’t discriminate between things; they just see something not flagged as part of me and they kick it’s ass.  that would apply to all sorts of ‘invaders’, including embryos.

because the hormones will mess with the tests, we can’t do any of the blood work until my body recovers and completes a ‘cycle’, and then it has to be done a few days after the next cycle starts, which means no IVF that round either, since we’ll already have missed the window to start.

a few things annoy me about this.  for one, why weren’t all these tests done last time?  why weren’t we told about these options?  for another, if i test positive for NK cell problems or autoimmune problems, they will put me on low-dose prednisolone for the duration of the pregnancy.  if nothing comes back positive, they will put me on low-dose prednisolone for the duration of the pregnancy.  yes, you read that right.  so, given that i told the doctor before we did anything that i had already tested positive for Sjogren’s and i have a very high ANA, why was that not done the very first time?  and when i miscarried the first time, why on earth was it not done the second time?  and now, if they’re going to do the same thing regardless of the results, why run the tests at all?

the doctor says our embryos are great and he would emphatically encourage us to try again.  we’re leaning that way, but we’ll see what the tests say.

i have one friend who seems to think that if there’s any chance i have an autoimmune disorder, i should rethink having kids.  seems a bit reactionary to me.

in other news, we are starting our research on adoption.  we’d considered adoption from the get-go, but figured IVF would be the easier, more successful route to try.  little did we know…

lots of other stuff going on, not lots of time…

file under ‘wish we’d been told’:

• start IVF at the beginning of the year.  this means that if you do multiple rounds, they’ll all be within one year (maybe), which allows for the best financial outcome on taxes (due to medical deductions).  we did this sort of by accident, so we got lucky.
• open a checking/debit account and make ALL payments out of that account; also deposit all insurance reimbursements INTO that account.  we wish we’d done this, because doing taxes is going to suck.  we have to track down every bill, every insurance explanation of benefits, and every reimbursement check stub, then figure what was covered by buying the package from the finance company…  ugh.  suck.
• make sure that the doctor’s office and lab code things correctly.  anything after the first positive pregnancy test should be covered as if you got pregnant naturally.  i’m now fighting insurance over a large sum of money because some lab work was done after i miscarried, to determine why i miscarried, but was coded with the infertility diagnosis code.

just notes…