Tuesday, February 28, 2012

Off to see the wizard




Today I woke up sicker than stink. Remember that cold I thought I was coming down with? Well, it's here: fever, chest  cough, malaise. Awesome. I'm spending the day in bed with Moxie curled up beside me.

Around noon, I went in to see the miscarriage wizard, aka the reproductive immunologist. Strange choice on my part, since I'm so ambivalent about him, but I'm grasping at straws here. I would see anyone who has some ideas on what I could maybe do to salvage this pregnancy.

Here's what the wizard did and suggested:
  • He drew buckets of blood to check my NK cell functioning, my TH1:TH2 ratio, and my clotting ability (b/c of the Lovenox). Results pending.
  • He wants me to up my prednisone to 20 mg (from 10mg).
  • He also wants me to do 4 endometrin suppositories instead of 3, in addition to the 1.5cc of progesterone in ethyl oleate daily.
  • He wants me to increase the Lovenox to 60mg (from 40mg). I'll think about it. Additional Lovenox makes me nervous. I don't want to add intracranial hemorrhage to my problem list, you know?

He also did a transvaginal ultrasound but couldn't seem to figure out how to zoom in very much (sigh). There is one gestational sac, looked oblong to me (worrisome, but he said it didn't matter). Didn't see a yolk sac, but as I said, his zooming ability seemed impaired, and these are small things we're talking about here. It's still fairly early - 5 weeks, 3 days.

I have another ultrasound lined up with my local RE on Friday. My RE is very good at zooming. So we'll see what we see. There really should be at least a yolk sac by then. I will also check the progesterone level again tomorrow and hopefully it will be bumped back up. Don't know if I'll check the hcg again. Not sure I want to know what the level is.

I'll be honest. I'm not very hopeful about this. I'm no longer cramping and am now feeling basically nothing in my uterus. I find myself starting to mull over what's next for us, but then I catch myself and try to just come back here for now. It's not over 'til it's over. And this really isn't over yet. Still...I guess I'm trying to prepare myself. We've been here so many times before.

Thank you so so much for your good-outcomes-with-low-progesterone stories and for your comments in general. I can't tell you how much they have helped to read. And re-read. And re-read again. So thank you.

More [cough] soon.

Mo

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35 comments:

  1. Thank you for updating us! I'm glad that he at least had some sort of plan and increased your meds. We're all here rooting for you. Praying for good things at this next appt!!

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  2. The increased Prog could be helping to quiet your uterus...so don't worry about no cramping...these early days are soooooo hard because from one day to the next it can be 100% different. But I do know this...early u/s with a bad machine or technitian should be ignored completely....the only thing you should not ignore is the fact that you have a sac and it is in the right place....AWESOME news at this point! AND...fwiw...I had bleeding at about this point and had an u/s at my RE where they have GREAT zooming possibilities and all we saw was a sac and he told me that was GREAT...they didn't expect much more at that point. So even though today's u/s may not have been the high tech...confident view u/s you would like...I didn't hear anything that alarmed me (and believe me...I have had enough early u/s with bad outcomes to know what to look for...and even some bad early u/s with good outcomes!!!!). Hang in there. I think the cold is a blessing in disguise to keep you in bed and rested for a couple days while your progesterone pops back up.

    Hugs.

    kd

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  3. Lots of great news in your post. Hang on until Friday- mentally that is. I know it's terribly hard, but like you said 'it's not over until it's over' and this is far from over. Huge hugs coming your way...

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  4. Oh Mo...everything is crossed for you. I've been right where you are now, and I know it's the worst feeling in the world. Even on our last pregnancy - where we finally found success - it was touch-and-go at this point and my progesterone was bouncing all over the place. I remember how positive Dr. Sch was and how he said that it's very common for this to happen, even though everything is fine. The way he explained it to me was that we used drugs to turn off my body from producing progesterone naturally - so the progesterone at this point in a pregnancy is nearly all generated from the drugs. When they do a blood test, it's like a snapshot - your progesterone levels can go from high-to-low at different times in the day.

    Hang in there - we're all pulling for you.

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  5. Mo, this definitely isn't over yet, please don't give up! As I told you, I have heard/read countless stories about dips or lows in progesterone and everything has been fine. All the comments you got to this effect confirm that - 11 is not even that dangerously low. I think it's hard to get accurate readings sometimes when you're doing suppositories as well. I am praying for you every day, and thinking about you even more often. And thank you again for the advice on OBs, so helpful...

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  6. I'm sorry you're sick ...that's the last thing you needed to add to your worry list this week.

    Just FYI - the lack of cramping is GOOD considering the increase in progesterone. My crampiness and aches always went away when I was on high dose.

    I forgot to mention ...when I had my progesterone junkie freak out with low levels, I kept hearin Paul Simon's song in my head on repeat over and over ... "save the life of my child ....cried the desperat mother ... ". That should keep your brain waves busy and focused for a couple of days.

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  7. If you check your stats I think you will find that people all over the world have been checking over and over and over again. Looking for comfort, for hope and good intentions. It is amazing how much you can care for someone you have never seen. But it is true, people care. It is amazing how much we can love the family we long to have. But it is true, it is love. I hope you can feel the support and that these hours and days pass quickly.

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  8. anonymous,

    I do. I feel it. I am humbled by all of the support and well wishes. thank you for taking the time to check in, and especially to comment.

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  9. No, it's not over till it's over. I had written off my pregnancy completely multiple times in the first trimester and yet it wasn't over until live birth at 37 weeks.

    I had an ultrasound at 5w2d and 5w4d (on good equipment) with Tiny Boy's pregnancy. The first didn't have a yolk sac, though my RE thought she saw the beginnings of one; the second it was obvious and she thought she could see the thickening where the embryo should have been. And was, with beating heart, at 6w2d.

    I so hope that your next u/s brings you comfort. And that next fall you're up to your ears in poopy diapers :) Keep us posted, Mo.

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  10. Sending you calming vibes, Vicks Vapo Rub, cough drops and lots of R&R. Try to take it easy (difficult, I know) and know that you have an entire community praying hard for you and lucky #7.

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  11. Oh no, I'm so sorry you are sick. Glad to hear you're thinking twice about the Lovenox; there's plenty of what we do that seems harmless but that one, not so much. I have no idea what you should do, but evaluating carefully does seem wise.

    My general experience with u/s machines is that they take 2-d images of 3-d things and even a skilled operator and good machine often produce "results hazy, try again later" findings. Or in other words, I wouldn't read anything into the oblongness.

    Thinking of you, hoping for wonderful things. Friday sure seems a long way off.

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  12. IVFlygirl has an excellent point. Your progesterone is entirely drug induced so of course there is the possibility of wonkyness. SO glad that you have all your docs on board and giving you the option of every intervention possible. You must be hanging by a thread mentally. Although no one can carry this burden of worry for you and give you the break you need there is a whole community around you who are sending love and zen and positivity your way. I know we are all checking on you multiple times a day and wishing we could send some measure of comfort electronically. Sending you an extra dose of support...
    Joy

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  13. Been thinking of you a lot lately. Praying that your P4 levels reverse course and you are on the road to 8 healthy months.

    I'll keep you in my thoughts for Friday.

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  14. Good luck Mo. I'm sorry this is so fraught. Take it easy with Moxie. Eat chicken soup. Please be kind to yourself.

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  15. Mo...I second what Flygirl said. Thats the exact explanation Dr. Sch. told me as well. It took my ovaries until about week 7 to finally WAKE UP!!! Take care Mo...

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  16. I hope your cold passes quickly - that is NO fun at all. It is most definitely not over, though I understand the need to try to protect your heart. I don't think I truly relaxed until I was about 16-17 weeks, and that was after a single loss. Take care of yourself and try to stay in this moment as hard as that is. In this moment, you are pregnant and you are doing everything in your power to keep it that way. We are all here rooting you and your little bean on! xo

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  17. Ugh. Do sorry you feel crummy, but yeah, glad it's going to keep you off your feet for a couple of days. Also glad you went to see Dr. Miscarriage. Sounds like he's got some good ideas for tweaking your meds and that's a good thing. Try to keep your brain quiet til Friday. I know. Like that's likely. Still. Thinking of you. Cuddle that sweet puppy dog an extra little bit for me, ok?

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  18. I can't say I've ever been in your position, but I sympathize SO much. I can't believe how much stress you must be going through right now...not to mention that cold!

    Looking forward to a really positive US on Friday!

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  19. I so know that "it isn't over til it's over feeling" that tries to co-exist with the "been here, done that" feeling. I do not want to poo-poo your pessimism because I hate when others do that to me. You know your body well and you deserve to go in to self protection mode whenever or however you wish.

    We are all abiding with you, waiting for results and what they mean. No matter what you saw in there today, I would call it inconclusive...meaning, with beta levels as high as yours, I would fully expect to see two by Friday (and, if not by Friday, then by your next u/s). I could be wrong and you have seen at least one gestational sac, so you are exactly where you need to be, regardless.

    If all your cramping had been a m/c in progress then, by today, you would have seen a far different picture.

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  20. I wish we could pass around your anxiety. We could all be anxious for you, each of us for a day or two, while you blissfully believe there will be a healthy baby this Fall.

    Re the Lovenox, wear VERY sensible shoes with good traction. You do not want to slip and fall while on that much. Be careful walking Moxie. Maybe let Will (or a dog walker) walk her when it's rainy.

    And I agree with Susan. Sucks to be sick, but cuddling Moxie and laying low sounds like a good idea. xoxo

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  21. I hope you feel better quickly! Wishing you all the best.

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  22. mo,
    so many emotions! i am not surprised you are sick, either. i always get sick when i am super stressed, like a little cherry on top of the stress-sundae.

    one sac! well, there you go! it is early. too early to know in that regard. sometimes i thought i should not look at the u/s screen, because i thought i could read them better, and i know i made a lot of things up in my head for later anxiety... 'what if that black streak i saw was the beginning of a tear?' 'what if that white dot i saw was actually a clot'. please do not think that because the sac looked oblong, it is over. please! those scans can make anything look long, short, tall, whatever... listen to the RI- i am really glad he snuck in a quick look though. the more info you can get, basic things, the more worry you can rule out (hey, its not triplets in there, you know?).

    will be thinking of you. this is all so tough on you! rest up. take it easy. what is the next step? more b/w tomorrow? when will the RI results come in? u/s set for friday? another beta check?

    take care, mo. and thinking of will, too... i am sure he is a bit freaked out about all of this, too.

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  23. also, mo,
    when i transferred 2 embyros, when we saw only 1 sac on the u/s, there was a period of mental adjustment to happen, i was a bit let down, or sad, or i don't know what it was. i always knew twins were a possibility, and twins seemed to happen to so many other ccs/ccrm women, and then, one sac for us. that disappointment only lasted for a little bit, but it was there, and i don't know if you felt anything like that today? that may add to your brewing pot of emotions too...

    i, for one, am really glad you saw one sac today! a big step.

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  24. Uhhh...your RI's approach does not seem too logical (unless there is something I'm missing in his reasoning), but most of his suggestions cannot hurt,except maybe the lovenox. That, I'd try a get a second opinion on, honestly.

    Your only apparent issue with this pregnancy is that your progesterone seems to be low. IMO, its a biology doing a very bizarre thing, but unless you have autoimmune antibodies neutralizing the progesterone, I cannot see how it might be an autoimmune issue. BTW, I googled for anti-progesterone antibodies as soon as your original post came up, no such thing has ever been described.

    Your immune system, from all apparent measures, is behaving itself- your embryo implanted normally, your HCG is doubling appropriately. IMO, his approach of trying to squash an already flattened immune system does not really address the issue at hand, which is the low progesterone. You don't want to get to the point where you are taking so many immune suppressants that you are immune compromised.

    Remember, low progesterone is usually a bad prognosticator when because it usually correlates with poor embryo quality and genetic abnormalities. Here, you do not have genetic abnormalities, and the fact that your progesterone was high to start with argues against poor quality as well.

    So whatever the weird biology issue is, the fix should be, from what little we know, straightforward- just take a crazy amount of progesterone, in every which way possible, and check every other related hormone, to see if there is anything weird going on there as well.

    Btw, thanks for the acupuncture suggestion, I got an appointment for Friday!

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  25. Hang in there! Thinking of you.
    XO from a "stranger" in Ohio!

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  26. I love what anonymous at 4:07pm said. I can't even remember how I found you, but I have been checking in every single day and thinking good thoughts for you.

    if wishes and prayers could make this pregnancy successful, you would have triplets (well. I mean. I'm not sure THAT is the desired outcome here but shoot, you know what I mean). So many people out here pulling for you and your little bean.

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  27. Mo
    Have been pulling for you for a long time. Everything I can think of in positive thoughts is sent your way. No real words of wisdom but hugs and beautiful images of you with your child in November.
    I so want this for you
    Blog friend in Seattle

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  28. I'm so hopeful for you still!!! If you think about it, there's no good reason to think that things are going badly, although I know you have to always prepare yourself for the worst case scenario. But I really have a good feeling for you this time - try to stay positive, I know it is hard. As for the Lovenox, when my hi-res OB checked my clotting ability early on in my pregnancy, he upped it from 40mg to 80mg. And I didn't have any issues with it at all. I was on 80mg for the entire pregnancy. I'm praying for you every day and hoping this is your miracle!!

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  29. I'm new to blogging and to following you. I'm really praying for you..I hope your RE can zoom away at that precious little one during your next appt.
    Katie

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  30. The fact that there is a gestational sac is a good sign. A lot happens on a daily basis in the first couple months, so it's very possible you'll see a yolk sac on Friday.

    It's ironic how we get concerned about cramping being something bad, and then when the cramping stops, we worry about the lack of cramping being something bad. But it's totally normal for the cramping to come and go...

    With regard to the Lovenox, is he doing bloodwork to check your coagulation levels? That might give you more of a comfort level with adjusting your dosage. I was on 40 ml twice a day, and the peri checked it and said I was at close to a therapeutic level rather than a prophylactic (sp?) level. She reduced it to 30 ml twice a day and checked it on a monthly basis for a few more months. I don't remember the name of the test off the top of my head, but if you want me to look it up, let me know and I will.

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  31. I'll pray for a nice and reassuring next progesterone level and ultrasound.
    Definitely don't give up hope yet. I know you'll be wanting to protect your hearts, but please keep a little pilot light of hope going in there anyhow...

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  32. I never ran a progesterone level above 10. Despite IM injections, vaginal supps, and panic, it would always be low (like 5, really). Despite that, I have two little boys who apparently didn't care so much about it. I genuinely hope that your low progesterone is the same kind of nonissue. Thinking of you, and hoping for 34 more weeks of panic followed by the miracle you so deserve.

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  33. Mo, sorry you are so sick! Here's to hope! I truly hope this is just a small bump on the road to an uneventful and successful pregnancy. (Fingers crossed, fingers crossed, fingers crossed.)

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  34. Keeping you in my thoughts and prayers. I hope that you feel better soon and that you get good news at your next appointment. Try to take it easy and try to stay postive. I know it is difficult.

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