My blood is sludge. (if you have clotting issues, come in please)

DavezWife · June 2011

So I just had the home nurse over to put my IV lines in for this month's IVIG infusions. This is the 3rd time we've done this, and had NO problems in the past plunking those perferial lines in, and baddabing, done.

Yeh, today she gets the needle in just fine, (gets a flash) but by the time she puts the saline on to flush, it's clotted and clogged.

I have a dozen attemps on my arms and hands to show for this. We're both stumped... warmed the arms, slammed some water...

I'm on (40mg daily) lovenox - this makes no sense.

Yeah, and then she take a syringe that had some blood in it... it was SOLID SLUDGE. Freaked us both out. Furthermore, I've been spotting for 3-4 days, but it's not bleeding, it's just clots. Scan this am says my ute lining is perfect, with NO signs of fluid. More clues. Just started estrace a few days ago. HUGE clue if you google hypercoaguable state. Just stopped BCP. another clue.

Dude. Those meds (and perhaps some transiet positive test results APA, etc) make my blood thicker than molasses.

I wonder if this was the reason behind Baby Owl's demise? (this nurse thought that too, as I was on estrace (2 mg TID) at the time, as I have been every IVF cycle)

I'm just yapping outloud here, and will call every doc I've got in the morning... but if you deal with any type of clotting issues, I'd love to talk. I'm hoping we can just bump my lovenox dose way up, but who knows.

I just feel like this was meant to happen today. Like, some serious answers to my "issues" was just plunked at my doorstep.

(or it's nothing, like everything else in this ride has been. LOL)

thx.

LoveMyGirlz · June 2011

WTF? I have no idea. A "normal" person wouldn't prob have sludgy veins, and especially being on lovenox (and low dose asa), I have no idea! What could it be?

futrkingsley · June 2011

I don't know if I have clotting issues but I came in anyway. That sounds so weird! I hope one of your docs can give you insight. The connection isn't new right? I mean that's why there are warnings all over BCPs about blood clots. It's amazing that you would actually see it in your own blood while also taking blood thinners though.

GuitaristsGirl · June 2011

I have several clotting disorders and would be happy to talk - but, I might not be much help since mine have not been conclusively linked to my IF, just my HELLP Syndrome ("Just"?!). Anywho, glad you keep finding clues, at least, but very bizare!

DavezWife · June 2011

well, and I don't bleed after blood draws or taking out my IV lines. Like, a drop. that's it. I've commented before that my blood seems thick. NOW we've seen it 1st hand. Literally, lol.

this REALLY makes no sense with how Ava got here, but whatever, that was years ago now.

this lovenox, which we were just taking empirically, and have never started early, is something that Dr. Kw ak's (famous doc) says to start it early, esp in a FET. imagine what that blood would have been like without that week of lovenox in it. AND.... evidently, lovenox's dose is weight-based, says Davez as he ducks. Since we're taking it for shitz & gigglez, no one thought to increase the dose as my arse grew. (thanks again steroids, loves it)

This is huge, ladies. HUGE. Embryos can't implant into sludge. Fetuses can't live when their nutrients is like molasses.

OMG, please please PLEASE let this point to something real. And quickly, I'm ballz to the wall on the timing of this. (I have to get the IVIG done before xfer) OMG.. what if this means I don't need steroids the entire pregnancy????????/

OMG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! lol. sorry. you are watching me freak out, LIVE! ;-)

sweetpea18 · June 2011

I have mthfr but it was easily treated with lovenox. However, I didn't find out I had it until I was pregnant with dd1. I ended up with several small superficial clots in my leg. When I had the doppler done, they found some older clots that were starting to break up on their own. I had m/c the cycle before my pregnancy with dd1. My hematologist thinks that I clotted easier because of the elevated hormones. I was on progesterone supps at the time.

njdcgirl · June 2011

Freaky! I know nothing about clotting issues but will stay tunes to see what Drs say tomorrow. Would love some answers for you!

j11skate · June 2011

I have MTHFR but only one copy so I have no insight, but, it sounds like you've found some stuff that could solve this for you! Yay!

LucyPevensie · June 2011

40mg of Lovenox is actually - nothin'. At the end of my pregnancy I was on 80mg - a 40mg shot in the am and another in the PM. I've never had a clot but I have sludgy blood too. And when it comes to starting a pregnancy (implantation) and maintaining a pregnancy - it is ALL ABOUT THE BLOOD. Microclots can eff up implantation and/or result in a chemical pregnancy. And during pregnancy - an inadequate blood supply causes what they call "withering on the vine" - and the baby does not survive.

Sludgy blood also goes along with inflammation. In addition to thinning blood - my understanding is that Lovenox also has anti-inflammatory properties. In my non-medical opinion - it sounds like bumping you up to 80mg a day would not be unreasonable. And yes - any hormonal type drugs will make blood more sludgy (as will a normal pregnancy - it's a natural response that helps save mom's life if she should hemorrhage. But if you tend to have sludgy blood anyway - hormonal drugs and/or pregnancy will make it too thick.)

Are you on baby aspirin and a fish oil capsule too? Keep slamming the water also. Eat garlicky foods. Drink Welch's grape juice. All natural blood thinners/anti-inflammatories.

togo · June 2011

njdcgirl:
Freaky! I know nothing about clotting issues but will stay tunes to see what Drs say tomorrow. Would love some answers for you!

This!

ladychicago · June 2011

Fingers crossed you are on to something, lady! Keep us posted!

DavezWife · June 2011

OMG. how did this escape me (AND MY DOCS!!!) so long? Has this been staring me (us) in the face the entire time?

LucyPee - remind me of your dx? seriously, this is huge stuff.

wiscgirl95 · June 2011

Hmmm. I have clotting issues. MTHFR and prothrombin gene mutation with history of DVT and PE's and I have never seen my blood look like sludge. What does your hemoc say? I was on Arixstra after I got the pe's on lovenox maybe that would be a better option for you? I hope you get some answers pronto!

MrsAMR · June 2011

Go see a hematologist... Stat!

I had two copies of MTHFR and developed PEs during my early pregnancy. I was put on Lovenox and was up to 100 mg BID by the end of my pregnancy. Lovenox is weight based and needs to be checked often to make sure they are within the correct levels.

My hematologist is convinced that the ivf meds are the reason I developed clots. (In fact, I'm involved in a study to hep prove/disprove this). When I developed my PEs they had me stop all my meds - scary, but my pregnancy stuck.

Best of luck to you!

hclavalley · June 2011

I wonder if this is the reason for your body's allergic type reaction at the end of each cycle. The thicker your blood, the harder time it has removing toxins through your liver and kidneys, and so they build up in your system.

Just another thing to think about.

sweetpea18 · June 2011

If the lovenox is doing what it should, your blood draws should take like three seconds to fill the vile. And then you'll still be bleeding after. And davez is right about the weight/dose. The only reason mine wasn't increased later in my pregnancy is because I was on a prophylactic dose. Sounds like you need a therapeutic dose, which would mean an increase as you gain weight (because of the growing bebe in your belly, no other reason! Lol!) I was also on a baby aspirin (still am). I always chalked my slow blood draws up to being dehydrated, but really it was my thick blood. I hope this is the very easy fix for you!

sweetpea18 · June 2011

I wonder if it's a combination of your blood and your body's reaction to the hardware in your back?

gringa78 · June 2011

I know you see a lot of docs...do you see a hematologist? My #1 worry in this situation is for YOU. This needs to be mentioned to a physician STAT so that you don't throw a clot to your heart or brain. Please, tell your doctor as soon as possible, especially since you're passing clots vaginally as well. I'll be looking for an update from you...I hope they can finally get to the bottom of this.

DavezWife · June 2011

gringa78:
I know you see a lot of docs...do you see a hematologist? My #1 worry in this situation is for YOU. This needs to be mentioned to a physician STAT so that you don't throw a clot to your heart or brain. Please, tell your doctor as soon as possible, especially since you're passing clots vaginally as well. I'll be looking for an update from you...I hope they can finally get to the bottom of this.

well, my nurse who was here tonite is NOT an alarmist, and she was like "Trac, you need to call your doc 1st thing in the morning. This is kinda scaring me." How on earth I've not had a stroke, eh. I've had lab techs say "man, you must be dehydrated" lots of times. And I know I'm not. Things are really starting to click.

I did see a hemotologist (and great one) a year? ago when I had that +APA. He repeated a lot of DVVT, etc tests, and nothing seems obvious. He's the one that said to start 40 lovenox empirically. (not all that odd in IVF/ART) I don't know if I can "spaz" my way back into his lab soon, but I'll try in the morning, I assure you!

I forget who said they were monitored to see if their lovenox dose what "correct" - do you happen to know what test? PTT? PT? what? I have in my head this a coumadin/INR thing but Davez says that's the wrong part of the cascade, and is too crabby to push for more explanation right now. lol.

I cannot tell you how bizarre it was to watch her IN my veins, and SEEING the needle right there, and have it clot up right before our eyes. Sludge. Serious thick sludge. It was like the twilight zone. (could this explain my super light periods? my weird high diastolic blood pressure? what?)

gringa78 · June 2011

I'm glad you're going in to your doctor first thing.

I have no idea what test they use to determine the correct Lovenox dosage - they just put me on 40mg/day (the standard). I didn't even know they tested for that.

I think I'm missing some backstory, but have they been able to identify what happened between having Ava and the status of your blood right now? Or is that the mystery? I would be in to a hematologist tomorrow if I were you...this situation just seems so unusual...almost like a hematologist would know it as soon as she saw it, you know?

I'm hoping, hoping, hoping they get to the bottom of this for you, hun. Hang in there.

alchris · June 2011

How totally, totally interesting. Trying to solve A with B and trying to solve C with D but B and D don't like each other and may or not be able to work simultaneously, right? And meanwhile you're treating E with F but it might be somewhat pointless given the other incompatibility? A complicated puzzle, but one that might just need THIS piece to see the big picture. Good luck!!!

DavezWife · June 2011

backstory? who knows. Ava is a delightful fluke.

OR whatever I have is transient (totally possible) and it comes and goes. Davez thinks I was taking Fish Oil with the twins, which is a natural blood thinner. I've done estrace /estrogen with EVERY IVF, ones that should of worked but didn't.

I don't know. But I've got some calls to make in the morning ;-)

Happycouple · June 2011

I have zero insight or imput. This is verrrrrry interesting and sure as heck hope this is the 'cause' to whats been happening!!!!!!!! Glad your calling the doc stat....

LucyPevensie · June 2011

DavezWife:
OMG. how did this escape me (AND MY DOCS!!!) so long? Has this been staring me (us) in the face the entire time?

LucyPee - remind me of your dx? seriously, this is huge stuff.

I have double MTHFR (homozygous MTHFR c677t - that's bad) and heterozygous Factor V Leiden (also bad - but homozygous FVL is worse.) But yeah, basically I have two bad ones. 3 known losses prior to successful lovenoxed/baby aspirined/Foltx'ed/fish oil capsuled pregnancy with Jack.

LucyPevensie · June 2011

I got checked every time they upped my dose - and they upped my dose as I got heavier during pregnancy. They started at 40mg - then upped me to 60mg (so, 30mg twice a day) - then as I said before upped me to 80mg by the end (190 lbs Surprise

) - and that was given in two 40mg doses - one in am, one in pm. I know they checked my platelets and clotting time - they wanted to make sure my blood wasn't getting TOO thin - it never was. I was always worried it wasn't thin enough! But it was. I specifically asked my MFM about Jack's placenta after my C-section - because I didn't see it - and he reported that it was "nice and juicy, just like your baby!" ha ha! But I had been concerned about it crapping out toward the end (a risk with the clotting disorders I have) so was very relieved to find out it hadn't even come close. And again, I remained on low dose aspirin, FOLTX (high dose folic acid prescription - sold under several different names - one I take now is called Folbic - same same) - and a fish oil capsule - Whole Foods 365 brand - every day throughout my pregnancy. My MFM and midwife team were fine with all of my extra pill popping.

laura1 · June 2011

You should definitely see a hematologist again. I have no experience with my own clotting issues, but am in the medical field. I remember learning about the clotting disorders and speaking with one of the (pediatric) hematologists. She had said that not all clotting issues are explained by the diseases that they test for now, and there are probably many more out there that just haven't been discovered yet. So just because you have tested negatively for some disorders doesn't mean you don't have one that they haven't found yet.

And the test they do to determine the correct dose of lovenox is the anti-factor xa level.

Good luck getting to the bottom of this!

mechanicsgirl · June 2011

Whoa! I have no experience, but I'm rooting for there to be some answers here!

armywife76 · June 2011

Oh, this is great! I was going to say check INR to see if it's therapeutic, but they don't do that with lovenox. Guess they use a chromogenic anti-Xa heparin assay. Ask Davez to explain that, lol, cause it sounds greek to me. Anyway, GL finding some answers today!

itsmevkb · June 2011

I just had my Lovenox levels tested on Monday. The lab I go to uses this as the reference range:

Twice daily dosing (peak): 0.50 - 1.10 Units/mL
Once daily dosing (peak): 1.00 - 2.00 Units/mL

The test is simply a Low Molecular Weight Heparin level, it's not an INR like you would get if you were on Coumadin. I believe the best time to get tested is around 4 hours after you do the shot.

Clearly I am not a doctor but I've been on Lovenox for almost two years now and 40 a day is NOTHING, specially since it is really a 12 hour drug. I was always on twice a day dosing until one doc switched me to 60 once a day but my blood levels were coming back at zero so I went back to doing 40 twice a day. My levels are better, but still not in the good range and that worries me. Of course, you don't want your blood over-thinned either.

I would ask about upping the dose as well as going to twice daily dosing and I would get the levels checked.

sescms2004 · June 2011

I will swear till the day I die that blood thinners were a key to my successful pregnancy. I never tried them during all my IUI's....waited until IVF to pull out all the stops. I fully believe that there were blood clotting issues going on during implantation for all my CP's. I didn't test positive for any of the big ones, but did have a positive APA, which can impact clotting. I started 40mg Lovenox with stims (came off for the day of retrieval, then right back on). Stayed on this dose till I got to 28wks, then bumped to 60mg. Switched to Heparin at 32 wks, incase I went into labor early (Hep leaves your system quicker) so I could get my epidural. I never had a PTT test done until I switched to Heparin, as they needed to monitor it more closely. I am small, so maybe that's why an 'empiric' low dose worked for me.

I'd be really curious to see your PTT results at this point, after starting the hormones back up. That should give you a big clue. Since Ava was spontaneous, and no extra hormones clotting up your blood, maybe that is key. Since you have to be on them for the FET, maybe they can adjust your dose to accomodate for it. I've heard of women going up to 80mg (actually, I think AuburnBride was one? She had lots of clotting issues, also, if I remember correctly).

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My blood is sludge. (if you have clotting issues, come in please)

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