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Women with blood clotting disorders - Page 3

post #41 of 610
Oh and you'd have to be deadly accurate for it to have all actually gone in the vein, you very likely went through the vein, or even just nicked it coming out.
post #42 of 610
Originally Posted by shannon0218
Oh and you'd have to be deadly accurate for it to have all actually gone in the vein, you very likely went through the vein, or even just nicked it coming out.

or have really bad aim... lol, I have yet to hit the spot i'm trying to hit!
post #43 of 610
You'll be an old pro in no time
post #44 of 610

a possible piece of the puzzle

I had my HSG (hysterosalpingogram) this morning to check for uterine adhesions. All's clear for that, good fallopian tube spillover. The shape's a little funky from my bicornuate reconstruction/fibroid surgery, but much better than my "before" HSG. Doc doesn't think it played a role in my losses. I *really* like my doc. This was only the 2nd time meeting and first time for an "hands on" procedures. He did a great job and I felt very comfortable (as much as can be managed in that situation).

I did test positive for 2 recessive MTHFR genes but my homocysteine levels are well within normal range so it's hard to say - apparently the gene plus high or low? homocysteine levels creates the "magical" combination. So we still don't know if that's the cause for my losses, BUT it will change things from here on out. Also my IgM levels were a little low/high (can't remember which way) but still within normal range. With the MTHFR he prefers to have me take high doses of B6, B12, and Folic Acid and then the baby aspirin for the IgM and not do the heparin injections. Says it's treating the problem upstream to use the B vitamins vs. downstream with the heparin. Any thoughts?

I'm off to do what I'm learning to do best these days - gather more info
post #45 of 610
Satori, I also have some Lovenox left over. Pm me, you can also have mine for shipping. If it's legal to ship??
post #46 of 610
Bumping this sleepy thread with this about natural anti coagulants posted by Satori in Pregnancy.

post #47 of 610
I hope everyone is well. Satori are you stopping the shots? Have you spoken to anyone about it?

I went to my GP last week to sort out a referral to the Professor at the hospital who deals with high risk pregnancies for a pre conception appointment. She was unwilling to make the referral without sight of a letter blah blah and she was also unwilling to remove my IUD 'in case I got pregnant unexpectedly' :

So I told her I would speak to my haemo directly and see what he had to say about a new pregnancy and he referred me to the Prof himself that day and I should get an appointment in the next week or so.

As I had him on the phone I asked him about any problems he could forsee with the birth as I will be injecting and he said that the only thing I must not do is have an epidural straight after having a shot of heparin but as I have had 3 labours without pain relief he didn't think that would be a problem! So I said "Do I need to be in hospital then?" and he said "No"

So I am hoping for a spontaneous labour and a homebirth yay!

Now I just need to get the practice nurse to remove my IUD and wait for the appointment with the Prof and see what Dh and I have to do to get him to support us in that decision.

post #48 of 610
Hi There.....Does Von Willebrands qualify me for this list? It's fairly mild, and I choose not to "treat" it....it doesn't sound nearly as serious as what you ladies have....but it *is* a blood clotting disorder!
need sleep..but will check back here, this thread is interesting....
post #49 of 610
My son and I both have severe Von Willebrand 2M (which is a very rare subset of VWD).

We both also have low Factor VIII.

I bled almost my entire pregnancy, and delivered 5 weeks early due in part to placental deterioration. I also nearly bled to death afterwards... (long story)

Right now I have factor concentrate (Humate-P) in my fridge that I have to carry, along with infusion supplies, for my son when we travel.

I wanted to respond, so that I could subscribe to this thread, and meet others with clotting disorders as well.
post #50 of 610
Thread Starter 
Hi everyone- I found this which I thought might be of interest:
Factor V study

Does anyone have thoughts about good birth control options for those of us w/ cdo's?
post #51 of 610
I'm pretty much limited to condoms according to my docs.
post #52 of 610
Originally Posted by ST
Hi everyone- I found this which I thought might be of interest:
Factor V study
Thank you for that article, ST.
post #53 of 610
That's interesting, my haemo has also published something about the selective 'advantages' of thrombophilias.

Here it is http://www.jr2.ox.ac.uk/bandolier/ba...s/keeling.html

On the other Q, I used to take the pill (pre diagnosis) but since then have had 2 copper IUDs with no hormones without any problems. I've also been reading about them as I have just had mine removed this week to ttc

I found this about IUD action http://www.fhi.org/en/RH/Pubs/factsheets/mechact.htm

I'm not usually in to factsheets as such but this one is well referenced.
post #54 of 610
I have antiphospholipid antibodies syndrome. This was found out after my daughter was stillborn. There weren't any signs of this when I was pregnant with my 4yr old son. So if a woman has blood clots in her menstrual period, is that a sign? I had clots in my period, mentioned it but was told if they were the size of a plum then that would cause concern. For my next pregnancy I would take baby aspirin, possibly heparin, and I would have non-stress tests.

post #55 of 610
Well here I am about 8 weeks pregnant and about to start on my third box of Fragmin.

Everything is ok apart from horrid nausea but I haven't actually been sick yet - unlike my last pregnancy with dd.

For 2 days now I've had trouble actually getting the needle to pierce my skin. Yesterday I had to try three different spots to get it to go in. Its like it bounced off my skin instead of going in. What gives?

I've been injecting in my very stretch marky lower belly and have not had any bruises, just blood blisters every now and then. Due to the 'stiff' skin I braved one a bit higher up and it went in ok and hasn't bruised. Yay! BUt who knows if that wil last!

I hope everyone is well
post #56 of 610
I am homo positive for MTHFR. We found it before my last pregnancy. Amazingly, I didn't have any problems (related to clotting anyway) with any of my pregnancies. The specialists I saw were pretty surprised by that. I did do a scheduled c/s because of the risk of loss late in pregnancy.

My twin daughters are also homo MTHFR positive (which just floored their ped)
post #57 of 610


I have never experienced any major trauma.

DS was a natural no med birth however supposibly they said it was taking a while for me to stop bleeding after delivery ( who knows though if they were rushed etc) DH did say though there was lots of blood.

year later i had a dental scaling and the same tooth that had lots of decay and needed a filling the next day started bleeding pretty bad ( no other teeth though bled) when it would try to clot they were the size of chicken livers then it finally dislodged after seeing homeopath in the late evening.....

This thrs im getting all 4 wisdom teeth removed and praying i will not have a repeat like i did with the scaling.....

ive had blood tests recently for a pulsing feeling in my leg i was having... though after seeing herbalist and chickweed tea it went away ( who knows what it was ) and blood tests CBC , a heart one and another all came back normal

anyone have weird clotting liek that ever?
post #58 of 610
Originally Posted by orangefoot
For 2 days now I've had trouble actually getting the needle to pierce my skin. Yesterday I had to try three different spots to get it to go in. Its like it bounced off my skin instead of going in. What gives?
I had the same problem, its one of the reasons I had to stop the injections, my skin became like steel and the only way I could get it in was to slowly force it in. Nearest I could tell I was forming scar tissue very quicky at each site which was preventing further injections.
post #59 of 610
Vent and whinge coming up

Ages ago I posted on this thread that I was looking forward to having somewhere outside the mainstream to chat about this stuff which is going on with me this pregnancy.

Now is the time I really need this if anyone can. I am booked for a home birth with the 'blessing' of my high risk care team. I am raising the flag there for the possibility of a normal birth and especially the additional risk of cs for those with clotting disorders. I am 100% sure that some women really do need cs and it has saved their children's lives but that doesn't mean it is necessary for everyone. I am not a crazy whacko irresponsible mother putting my child's life at risk and I'm feeling like I don't want to read that forum anymore. After unsubbing from the Yahoo group for the same intolerance of 'normal' views I'm feeling a bit alone in my 'madness'. Is there anyone out there like me with this going on or am I destined to be the one who is swimming against the flow?

Maybe I am blabbing too much and should just shut up but I don't know anyone IRL in my situation and I'm feeling unsupported. Dh is alongside me, my mw is fantastic but some of my friends don't really get any of it and I feel like I con't complain about the state of my belly or feeling sick or worrying how my leg will hold up when I get huge because they think I shouldn't have got pregnant with a FOURTH child in the first place.

post #60 of 610

You are not crazy! Do what your spirit and body is telling you.

For me, it was a c/s. Your mileage will vary.
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