The plot thickens....

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here
mama2twins
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Re : The plot thickens....

Postby mama2twins » Tue May 29, 637668 2:55 am

I agree Jenn..it would quite crappy to be both. I also think that my PE was c-section related. I am going to send all my recent labs up to NY and ask that MD I saw to call me about them.

Izabel,
The doctor I saw in NY thought that I should not be automatically anticoagulated during pregnancy, but that my lab values for a few clotting antibodies should be monitored. If they start rising with pregnancy, then maybe the choice would be reconsidered. All pregnant women are at a higher risk for blood clotting when they are pregnant, so if I have some clotting factors, I would be at a higher risk....but now this whole hypocoagulable thing is showing up and women who are "bleeders" outside of pregnancy usually become normalized during pregnancy. So who knows at this point.
My placenta had a microvascular infarct, but the NY MD said that it is expected with someone who had PE and HELLP. There were no clots. Part of the placenta was very adhered to my uterine wall and they had a difficult time removing it. (they were pretty much lifting me up off the table in the OR they were pulling so hard..that is when my anestheologist friend knocked me out at my request...the babies were out already). Going with the placenta problems leads to PE theory, my OB suggested that everything could have been started by a placenta that was not functioning properly. My tiniest peanut had IUGR and had that part of the placenta.
As far as the pulmonary embolism...I am now thinking that it is often a result of c-section surgery regardless if a person has normal, hyper, or hypocoagulable blood. The MD I saw in NY brought up the fact that it would have been very different had I formed a clot or clots in my lower legs during or after pregnancy, but the hip pain that came and went and the timing of the PE, makes it sound like it was there from surgery. I am not sure if anticoagulation post-op would have made a difference. All questions I need to ask my let's see....8th MD including my OB and Peri....

jenndola
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Re : The plot thickens....

Postby jenndola » Mon May 28, 637668 12:24 pm

Michelle, it would actually be entirely possible to be a clotter AND a bleeder (how seriously crappy would that be?!). From your tests, though, it's starting to sound more and more (in my highly unmedical opinion) like your embolism may have been related to your c-section and you fall on the bleeder side. I'm glad the hemo is sending you to someone who deals specifically with coagulation issues. I have a feeling you'll get a LOT better answers there! Let us know when you find out.

izabel
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Re : The plot thickens....

Postby izabel » Wed May 16, 637668 8:25 pm

Alexza you got the embolism sooner than Michelle and I. In your case, I would have said that it is not related to the C-section at all. In our case, because we got it after 2 weeks you can say that it is related to the C-section rather than HELLP.
It is very confusing. I don't understand anything and I am so interested to know more.
In my case it was obviously a placenta problem. An ultrasound before delivery showed two huge holes in my placenta. But I don't know how to relate this to the fact that I am not positive to any underlying disorders. The big question is.....is it a one first pregnancy thing, or not?
Another thing is I was on heparin shots twice daily after the C-section and still got the embolism.

alexza
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Re : The plot thickens....

Postby alexza » Wed May 16, 637668 6:12 am

Isabel,
Sounds a bit suspisous that a clot for you may have been caused by a fall or large bruise. Sounds stupid, but I always worried about it when they told me to watch out, and not to get any bruising as it may lead to a blood clot. (ie. your body repairing the bruise but does it in overdrive) Maybe the docs were just freaking me out about not falling for other reasons. Or maybe just really high blood pressure? they still aren't sure which caused mine, the bp, the C or the combination. Anyone else got any comments? Just thought I'd give you my 2 cents.

izabel
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Re : The plot thickens....

Postby izabel » Sun May 06, 637668 10:05 am

Michelle,

you know I am following your story.
I don't know what to think. Can you be a bleeder and once you get pregnant a clotter?
I have never tested positive for any blood clotting disorders, but the doctors still believe I am a clotter.
When I got the embolism, I had pain in my leg for a week. The day the clot moved into my lung I had such a pain in my leg that I coudn't properly walk.
Michelle, how was your placenta?
Mine was more than 50% infarcted because one of my uterine arteries was completely blocked by the blood clots.
Did you have any blood clots when you developed HELLP?
I am asking you this because in my case the doctors think that the blood clots from the uterus traveled through my body and the embolism is not related to the C-section.
I hope you will find an answer soon.

alexza
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Re : The plot thickens....

Postby alexza » Sun May 06, 637668 4:27 am

Actaully I wouldn't have known if there was any pain anywhere else. I was uncounsious for the first 24-48h of motherhood due to extreemly high blood pressure. (24h nurse, special me. ;) ) And between my infected C-section and embolisim that showed up on the 4th day... well a bit of pain in my leg probably got severly overlooked at that point. ;)

mama2twins
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Re : The plot thickens....

Postby mama2twins » Tue Apr 24, 637668 8:37 am

Hee Hee..Pretty funny Caryn!!
And Alexza..thanks for your story as well. The last doctor I saw also thought the blood clot was purely from the c-section and bedrest. I actually have looked at some studies recently that showed that more people then they would have thought actually form a blood clot post c-section, but I guess it does not always cause a problem...here is one:
http://www.obgynsurvey.com/pt/re/obgyns ... 44!8091!-1

I had deep hip pain prior to the pulmonary embolism...and it "mysteriously" went away after the pulmonary embolism...a few doctors blew off this connection, but I think referred pain from an iliac vein clot makes sense to me! Did you have any pain prior to the pulmonary embolism?

onfaith
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Re : The plot thickens....

Postby onfaith » Mon Apr 23, 637668 10:34 pm

I am so sorry that you are going through this Michelle - - - - here's hoping for a real diagnosis soon!

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caryn
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Re : The plot thickens....

Postby caryn » Mon Apr 23, 637668 4:12 pm

I think you should change the thread title, to "the plot thins..."

...sorry, that was awful...[:)]

alexza
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Re : The plot thickens....

Postby alexza » Sun Apr 22, 637668 6:25 pm

Hi,
I had the similar test done with the cutting of the forearm. Seemed strange at the time, but hey they're suppose to be the professionals right? lol.
I also had a pumonary embolism after my emergency C-section due to PE/mild HEELP. I knew I had something at day 4 after the birth, the doctor's didn't believe me until day 7 when they readmitted me when I couldn't lay back past the sitting position without screaming my head off. (I bet you can relate) ;) After all is said in done, all the tests came out neg for underlying disorders. So, they came to the conclusion that the bloot clot was due solely to the operation and the high blood pressure all at the same time. They had also noted that with any operation I go into from now on I will require a shot of Heprin (Heperin sp?) beforehand, including daily shots with any following pregnancies.
My little bit of history to say you're not alone with the mystery clotting. ;)



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