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Women with blood clotting disorders

post #1 of 610
Thread Starter 
This is a place for those of us with clotting disorders to discuss issues, questions and concerns related to clotting disorders. We can also share information and experiences- both mainstream and alternative in relation to cdo's.

Pregnant and non-pregnant women are welcome to participate.

Should we start with intros? There seem to be quite a few of us floating around MDC these days...
post #2 of 610
What a fabulous idea!

I was diagnosed with APA in 2001, after having 3 first-trimester mcs. (to be really technical, I have anticardiolipin antibody syndrome, IgG components) In order to have my dd, I had to give myself heparin and lovenox injections twice a day from 3 dpo to 6 wk pp and get biweekly u/s to check for IUGR. It's one of the main reasons I don't want to have any more biological children - it was just too stressful. (I had a cerclage on top of that, so you can imagine how fun that was!)

The biggest way APA affects my life:
- can't use hormonal bc or get an IUD (doc said it would be too risky)
-supposed to take a baby aspirin a day to prevent clots
-can't start back my martial arts training (I stopped before I was diagnosed) because my hematologist said it was too risky with how often I would get bruised and banged up
-supposed to inject blood thinners before any flight longer than 3 hours
post #3 of 610
Hi ladies ,

Don't know if I really belong here or not, and no offense, but I'm hoping not . I just had about 14 vials of blood drawn today, so we'll see what that shows. My reg ob/gyn did test me for Factor V and the anticardiolipin antibodies. All 3 antibodies and the Factor V came back negative. My new ob/gyn (maternal fetal specialist) is testing for:
protein S & C
antithrombin III
Methlenetetrahydrofolate reductase (yeah, say that one 10 times fast )
prothrombin 20210a mutation
anticardiolipin antibody
lupus anticoagulant

I found this fabulous research article on the Factor V yahoo group files called Recurrent Miscarriage Syndrome and Infertility Due to Blood Coagulation Protein/Platelet Defects: A Review and Update. It's from 2005 so it's nice that it's current. I think it's interesting that 29% of women in the study tested positive for antiphospholipid subgroups but NO anticardiolipin antibodies or lupus anticoagulant. The second most common defect that was found was sticky platelet syndrome (SPS).

I waiting to hear back from my doc's office because I don't think SPS was one of the tests he ordered, and he definitely didn't order the antiphospholipid subgroups. I hate being a PITA, but after 2 m/c let's leave no stone unturned within reason.

As far as intros - my medical history (I swear I'm healthy, honest!), hashimoto's thyroiditis, uterine surgery to remove large fibroids and correct a significant bicornuate uterus, 2 m/c, and all the tests, docs and more tests that goes along with all of that. I swear I've seen more doc in the past 2 years than I've seen in my entire life. Sigh. I'm very glad to have found out about this potential piece of the puzzle - or at least have the information to check it off the list. I'm really pleased with the maternal/fetal specialist my ob/gyn referred me too - especially since I'm not planning on continuing care with him.

post #4 of 610
Thanks for pointing out this thread ST!

They don't know what the heck is wrong with me but they are assuming I have some kinda clotting issue that is not showing up because I had a loss at 5 months, HELLP syndrome and severe pre-e with dd, 3 more m/c, the last being this summer at 12 weeks after seeing a normal baby at 8 weeks with a HB. Tests showed the baby was normal. I have a long family history of clotting issues so this time around they are putting me on Lovenox injections. I tried injecting myself yesterday but couldn't bring myself to do it so I have a Dr's appt to have the nurse show me how to do it today. I'm pretty sure I know how but that 1st shot is scaring the crap outta me. I'm 4 weeks today and have been on baby aspirin since about a week before I O'd.
post #5 of 610
For the lovenox, the things I found helpful were 1)icing the area for 10 minutes before and 10 minutes after the shot 2)making sure to get the air bubble out of the syringe.

Good luck!
post #6 of 610
I was told the leave the bubble in because it "sealed" the drug in. I've never seen needles like this but I don't even see a bubble and I did look for it.
post #7 of 610
What dosage are you using? I've used 40s and 80s and they both had bubbles, you just have to hold the needle pointing up and then thump the barrel a few times.

Both the pharmacist and my hematologist said to push out the bubble, just be careful not to squirt out any of the liquid. It makes the injection MUCH easier because there's no resistance (less painful, too,,imo, because you're not pushing an air bubble into your skin).
post #8 of 610
Hello hello

I have Protein S Deficiency. I was diagnosed between ds1 and ds2 back in 1996 when even fewer people knew about it. I have since had my dd (02/03)and an ankle to groin DVT (08/03). I inherited PSD from my dad and he died this year from complications from a clot in his bowel so although I have had three children without any problems some days I feel like PSD is a horrible thing.

Dh and I will be ttc at the end of this year and it will be my first pregnancy with Lovenox or Fragmin, previously I was only treated prophylactically post partum with Fragmin and Warfarin (Coumadin to you).

On the bubble in the syringe; it it designed to form an air seal at the end of the injection. Tip the syringe needle down the air will rise to the back of the liquid then you inject the liquid and the 'bubble' is at the end of the injection which should prevent bleeding from the injection site.

I hope to hear more from you all over the next few months and look forward to hearing more NFP perspectives instead of the very conservative/aggressive management that I read on the mainstream Yahoo preg/clotting boards.

Best wishes to you all
post #9 of 610
Hi, I'm moving this to Health and Healing per our rules in Finding Your Tribe that if it fits into an existing forum, it should go there.
post #10 of 610

I did it!

I gave myself my injection! It took several false stabs before I actually did it though but what was odd is it wasn't a conscious thing! All the sudden I was seeing myself do it and thinking "OH CRAP!" and before I knew it the needle was in! That part doesn't hurt but putting the Lovexon doesn't feel to good, burns like heck! and why the heck does it burn even more after your done?
post #11 of 610

I'm not sure exactly why it stings like mad for a while after but I imagine it is because the liquid is not far under your skin and there isn't much room for it so you feel irritation through your skin nerve endings?????

Resist the temptation to rub at it like mad to ease the stinging,do some relaxation breathing instead. Rubbing irritates the area even more and increases bruising. On my first round of Heparin in the old days they encouraged me to rub, but more recently after my DVT the specialist nurses told me why not to and I did have much less bruising, well smaller ones at least.

I have had lots of injections of the stuff but never actually injected myself which is one of the reasons I was holding off ttc.

I take my hat off to you. Are you ready to do it again tomorrow? :LOL
post #12 of 610
Originally Posted by orangefoot

I have had lots of injections of the stuff but never actually injected myself which is one of the reasons I was holding off ttc.

I take my hat off to you. Are you ready to do it again tomorrow? :LOL
I don't have much choice if I want a chance at a live baby, its pretty good incentive The things we do for our kids Becasue of the cost my insurance only covers 3 days at a time so I need to pick up more today but hopefully the TAR went through and i'll be able to pick up 30 days worth.
post #13 of 610
Thread Starter 
Hey everyone and welcome,
I'm going to try and keep up with this thread, but I have a newborn (3 weeks old) here so it's kind of hard...doesn't help when the thread gets moved...lol. I wonder if others will be able to find it here.

Lisa, I'm glad you're getting some answers finally. I commented on your blog recently (username: mamanaz)

orangefoot, I'm sorry to hear about your dad. Thank goodness you have three healthy children!

In order to have my dd, I had to give myself heparin and lovenox injections twice a day from 3 dpo to 6 wk pp and get biweekly u/s to check for IUGR. It's one of the main reasons I don't want to have any more biological children - it was just too stressful.
I was diagnosed during my second pg so I started the shots at 17 weeks and have 3 more weeks to go. I was monitored heavily for IUGR as well and was induced at 37 weeks because my uric acid/creatinin levels were rising and signalling a change in the function of the placenta. Amazingly, I have been sitting here for the past 2 weeks trying to think about when I can get my dh to agree to try for another. LOL. I think I am quickly forgetting how annoying it is to be pg with a cdo. Who'da thunk it?

Congrats Satori. I think the first shot is really the hardest. My dh nearly passed out watching me do it the first time and it was pretty surreal but then we both became old pros at it. I literally stab myself, inject and go. I am really looking forward to only doing this for three more weeks.

As for my intro- I have Factor II mutation (heterozygous). I have been asymptomatic until the stillbirth of my first son @ 37 weeks in 12/02. In that pg, although everything looked great on the surface, I had IUGR and sudden onset pre-e. Once I'm done with the lovenox pp, I plan to eat/drink ginger, garlic and purple grape juice daily since they are natural blood thinners, in addition to the usual protocols (exercise, no bcp's, etc).
post #14 of 610
ST, I'm glad to hear you are all ok. Thank you for your thoughts.

Whateverdidiwants Why do your docs not recommend an IUD? I only ask because I am on my second non-hormonal copper T and my haemo said this would be fine - and preferable to an unexpected pregnancy from his point of view.

I have yet to meet my specialist OB but hope to in the next few weekls before we start ttc, but from what I understand I will just do the shots and have my liver function checked through bloods. Do you think that over there docs are more fixated with scanning and 'knowing' everything generally which then goes into overdrive when you have some kind of 'abnormality' (for want of a better word)?

I've been reading about Nattokinase and some other natural anti platelet things. Have any of you any experience with those? If I ever get another clot I will be on Warfarin permanently so I'm looking into other possibilities before that happens.

post #15 of 610
T- I am glad you started this thread.. Just a short intro for others.. I lost my first son pre-diagnosis at 40 weeks he was 8lbs 22 inches.. My bp went sky high and my Dr. recommended that I get the testing done.. I also have the prothrombin factor II mutation.. 1 copy.. I am 8 months out form loosing Luke and trying to loose a little more weight before TTC.. but we will be trying November!!
post #16 of 610
Hi there,

ST suggested I join this thread, so here I am.

I can't say I have a clotting disorder currently, but as a result of a placental abruption w/my 2nd pregnancy, I developed DIC. Disseminated Intravascular Coagulation compromises your body's ability to clot blood upon severe trauma. It is usually fatal and the only reason I survived (besides the grace of God) is b/c I'm 25 and healthy. Unfortunately, my Reagan did not survive and was born still on 8/29/05.

I received 30 units of blood and blood products (fresh frozen plasma and cryoprecipitate) over 2 surgeries and 3 days. I followed up w/the hematologist about 3 weeks ago and my blood was back to normal.

I am very interested in getting other testing (especially genetic testing) before we conceive again. I want to know if there's an underlying problem that is going to cause me problems again in the future. This thread is very informative (you guys know your stuff!!) and I'm going to keep a close eye on it for any info I can get! Thanks, ST!
post #17 of 610
Hi, I'm FVL hetero; DVT'd at least twice, with a probable misdiagnosed pulmonary embolism in addition. First DVT was long before any genetic tests had been developed; I was smoking and on the pill at the time. Quit both right after. Years later, ran the gamut of tests pre-conception and got the diagnosis. No fertility or other problems. Did prophylactic doses of Lovenox during pregnancy with DD1, clotted postpartum (DVT) probably because my OB took me off too soon. Chose to continue with warfarin even after the DVT was dissolved. DD2 was conceived accidentally while on coumadin but found out soon enough everything was OK. This time I did therapeutic doses of Lovenox and started warfarin post partum. Still taking warfarin.

Other than the Lovenox, I chose the low intervention route for both kids and used an OB only (no hemo, no perinatal OB). DD1 was born at 42 weeks by c-section after 24 hours of hard labour. DD2 was born just shy of 40 weeks by scheduled c-section (we agreed to try for a VBAC should labour start earlier). Because both pregancies went smoothly with obviously large babies, I was very hesitant to induce at 38 weeks as is typically the case. I refused Vit. K for both girls in case they have the FVL mutation (didn't want them to have it with my hormones running around in their bodies)... though I probably would have refused it anyway.
post #18 of 610
Originally Posted by orangefoot
Whateverdidiwants Why do your docs not recommend an IUD? I only ask because I am on my second non-hormonal copper T and my haemo said this would be fine - and preferable to an unexpected pregnancy from his point of view.
My clotting factors are very very high and my hematologist thought it would be too much of a risk for me. It may be overreacting on his part, but I'd rather be safe than sorry. Besides, IUDs freak me out since I was conceived while my mother had one in.
post #19 of 610
I have a few friends also conceived that way! I am happy with moine and haven't had any problems; I think they are better now than they were when we were young, but with your experience I might think more than twice about it!

Diaperin mama What an awful thing to have happened, I am so sorry. You may have looked at this page already but section 5 has a loooong list of all the things you can be tested for to see if you have an underlying condition which caused your situation. The documents produced by eMedecine for PSD are reliable so I think this one is also likely to be so.

What did the haemo say? If he was just happy that your bloods were back to normal and that was it - harrass him for a load of tests and brace yourself for armfuls of blood to be taken.

Sarah, I am sorry to hear of your little one, and wish you luck ttc.

Re nohiddenfees, for anyone else weighing up vit K or no vit K there is an interesting thread here started by ST a while ago.

post #20 of 610
HELLP Syndrome survivor here - -anyone else deal with this?
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