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Women with blood clotting disorders - Page 27

post #521 of 610
Quote:
Originally Posted by AllyRae View Post
I know I posted in this thread somewhere, but it was when we thought we weren't having any more children. Surprise--apparently we are. LOL! Anyhow, I have essential thrombocythemia which is a form of chronic leukemia (not just something present during pregnancy). I developed it over 2 years ago. During this pregnancy, my risk of clotting and hemmoraging is pretty high. I'm on baby aspirin and have ultrasounds at every appointment to check for clots, iugr, etc. At 37 weeks, I'll be having a c-section (I won't do pitocin after what happened to our son, but this baby needs to come out as soon as it's safe to do so...)
OMG, Ally!!! I had no idea!!!! Wow! :: I wish you a safe pregnancy. Let's get little Amelia here safe and sound!
post #522 of 610
Hi everyone, I'm new to this thread. I have had 3 first trimester m/c and after the third I found out that I am compound heterozygous for MTHFR. My OB told me I just needed the folic acid, b6, and b12 and everything should be fine. He also told me he didn't really know much about it so I went ahead and made myself an appt with an RE. Our appt with the RE is next week and I am hoping to have some further testing done (to check for other clotting disorders or possibly other issues since my OB only ran a very basis test) and to ask about baby aspirin (which I've actually been taking anyway since it seems like everything I read online says I should be taking it) and the possibility of heparin/lovenox.

So here is the thing, I really want to have a homebirth. There is no birth center in my area so it is either a hospital birth (which I had with DS) or homebirth. Obviously, having my baby and myself be okay is what is most important to me, but I just don't know if this is something that would preclude me from having a homebirth. I don't really want to ask the RE about it because I am guessing he would say homebirths aren't safe for anyone at all. I figured here would be a good place to ask. If MTHFR is my only issue, is homebirth out of the question? Does it make a difference if I take heparin/lovenox? I would like to avoid using those, but again, I also don't want to lose another baby. I am just not sure if they are necessary.

Thanks in advance for any help you could give me on this...
post #523 of 610
Hey everyone
I have type 1 von willebrand disease and I've been seeing a hematologist. The only symptom I have right now is heavy heavy heavy severe bleeding during the first 4 days of AF. Hematologist says there is nothing he can do for me, I need to see an gynecologist. : I bled a lot after the births of both kids and needed pitocin. Something also happened when I had my tonsils out when I was 15, but I can't remember what happened and neither can my mom. Anyone have any advice?
Angela
post #524 of 610
Quote:
Originally Posted by babygrant View Post
Hey everyone
I have type 1 von willebrand disease and I've been seeing a hematologist. The only symptom I have right now is heavy heavy heavy severe bleeding during the first 4 days of AF. Hematologist says there is nothing he can do for me, I need to see an gynecologist. : I bled a lot after the births of both kids and needed pitocin. Something also happened when I had my tonsils out when I was 15, but I can't remember what happened and neither can my mom. Anyone have any advice?
Angela
Could be a hormonal imbalance - I would get some bloodwork done.

I am unable to continue with hormonal therapy (thank you, clotting disorders! but I do drink RRL tea and bone up on my iron and B vitamins during AF. This helps to regulate things. Good luck!
post #525 of 610
Quote:
Originally Posted by Espresso View Post
and is KNOWN to cause birth defects.
What are you referring to here?

BabyGrant I think there is a VOn Willebrand support group out there somewhere and I know the British Haemophilia Society have a VW page and I just found this link to a booklet you can view online which may give you some clues.

I am a clotter not a bleeder but I've read the info at the centre I go to and I'm sure that heavy menstrual bleeding is a sign of VW and so it is definitely a haematologist you need as this is not an obstetric problem - unless he is suggesting you do away with the problem by removing the offending uterus:. You need a new haemo if yours isn't interested.
post #526 of 610
I'm back again...

I posted in here last year during my second pregnancy (we had a beautiful home birth 12/2007)

and NOW, I'm expecting in June 09! We are planning another home birth, and are quite excited about it now.

I had 2 blood clots, one after a c-section, and the other in the 3rd trimester of second pregnancy. I stayed on Lovenox post partum (because I'm nursing) and have just continued it right into this pregnancy.

During my last pregnancy I was seeing a hematologist that was 'ok' with home birth, but would push me to see an OB at nearly every visit. (which I never did)
I found out today that she is on maternity leave until March, so I will be seeing another doctor. This makes me incredibly nervous, because you never know who you will get!

I was told I would be seeing Dr. Hwang or Dr. Wu (In the Indianapolis area)
Is anyone familiar with them?
Also, for anyone who was considering a home birth, how did you pick your hematologist? It seems like it would be a little strange to just call around asking "hey, are you home birth friendly?" (although I really wish it were that simple)

I guess I should include that this is for a likely, but not confirmed protein S deficiency.

Thanks!
post #527 of 610
Quote:
Originally Posted by ghuaghua View Post
I'm back again...

I posted in here last year during my second pregnancy (we had a beautiful home birth 12/2007)

and NOW, I'm expecting in June 09! We are planning another home birth, and are quite excited about it now.

I had 2 blood clots, one after a c-section, and the other in the 3rd trimester of second pregnancy. I stayed on Lovenox post partum (because I'm nursing) and have just continued it right into this pregnancy.

During my last pregnancy I was seeing a hematologist that was 'ok' with home birth, but would push me to see an OB at nearly every visit. (which I never did)
I found out today that she is on maternity leave until March, so I will be seeing another doctor. This makes me incredibly nervous, because you never know who you will get!

I was told I would be seeing Dr. Wong or Dr. Woo (In the Indianapolis area)
Is anyone familiar with them?
Also, for anyone who was considering a home birth, how did you pick your hematologist? It seems like it would be a little strange to just call around asking "hey, are you home birth friendly?" (although I really wish it were that simple)

I guess I should include that this is for a likely, but not confirmed protein S deficiency.

Thanks!
Congratulations! :::
Its so great to hear that you were able to have the home birth you wanted AND that you're pregnant again! Nerve-wracking as it may be
I think that if you tell your hemo about your sucessful homebirth, they may be a little more relaxed about it. Though don't count on it Not that it matters, you're the one giving birth. They may push for all kinds of things but ultimately, its up to you.
post #528 of 610
Anyone know of any dietary recommendations for people with von willebrand?
post #529 of 610
Hey, bumping this back up to ask about homebirth. As I said a couple of posts up, I am compound hetero for MTHFR. I'm almost 19 weeks pregnant and no problems so far. I have been taking the extra folic acid, b6, and b12 along with a daily baby aspirin.

Do you think my situation risks me out of homebirth? I really want to have a homebirth and am in the process of looking for a midwife. I know what my OB will tell me, so I was looking for opinions from the other side of the fence where people are actually open to homebirth in the first place.

Thanks!
post #530 of 610
Quote:
Originally Posted by railyuh View Post
Hey, bumping this back up to ask about homebirth. As I said a couple of posts up, I am compound hetero for MTHFR. I'm almost 19 weeks pregnant and no problems so far. I have been taking the extra folic acid, b6, and b12 along with a daily baby aspirin.

Do you think my situation risks me out of homebirth? I really want to have a homebirth and am in the process of looking for a midwife. I know what my OB will tell me, so I was looking for opinions from the other side of the fence where people are actually open to homebirth in the first place.

Thanks!
Do you have any prior clotting instances? If so, then have a hospital birth (I've known a few women with prior clotting who died shortly after birth due to further clotting).

I am not a doctor or involved with the medical profession other than being a patient, but I think that if you are not so severe as to be managed with Lovenox/Heparin (which due to the bleeding risk you'd probably be best in a hospital), that you might not necessarily be risked out of a homebirth. Definitely keep up on the prenatal care and keep close track of any symptoms and pain, but talk to a midwife to see what your options are. Can you get prenatal care through a midwife for consistency's sake? Is a hospital near by just in case?

Unfortunately, I'm risked out - 3 clotting factors (MTHFR, Prothrombin 20210A, and Lupus Anticoagulant), problems in prior pregnancy, and history of emboli with infarction - but I know of some moms on this thread have had homebirths. Good luck!
post #531 of 610
I had a (wonderful, unassisted) HB : I think I have some more detail in a previous post on this thread.
post #532 of 610
Did your doctors make any recommendations for how long you should be on folic acid/B6/B12/baby asprin prior to conception? My doctor has said at least 3 months & preferrably 6 to build up stores.

I had a 22 week stillbirth due to a placental hemmorhage, and subsequently discovered I have very high homocysteine. My doc is treating me as if I have a clotting disorder, although most bloodwork is back & is clear (MTHFR pending).
post #533 of 610
Quote:
Originally Posted by railyuh View Post
Hey, bumping this back up to ask about homebirth. As I said a couple of posts up, I am compound hetero for MTHFR. I'm almost 19 weeks pregnant and no problems so far. I have been taking the extra folic acid, b6, and b12 along with a daily baby aspirin.

Do you think my situation risks me out of homebirth? I really want to have a homebirth and am in the process of looking for a midwife. I know what my OB will tell me, so I was looking for opinions from the other side of the fence where people are actually open to homebirth in the first place.

Thanks!
As someone else said, if you aren't on Lovenox or Heparin, it may not be that serious? I found midwives in my area who are fine with me having a home birth on Lovenox/Heparin. In fact, I already had one, and it went incredibly well.
post #534 of 610
Hope you ladies don't mind, I'm going to lurk. I have an aunt with an unknown bleeding disorder (possibly clotting, I'm wondering about von Willebrand's but she's been trying to find out what's wrong for at least 40 years).
post #535 of 610
Hi, I've also been lurking for a while. Unfortunately my options of a homebirth are out of the question for me. I've been diagnosed with dvt. I was on lovenox and now I'm on warfarin (coumaden). I just recently had my baby about two months ago, from an emergency c-section, and now I have two blood clots. I guess my question is this. Before last week my bleeding from the postpartum c-section was almost finished. Coming in drops here and there. After my six week appointment last week I have been bleeding a whole lot more. Like heavy bleeding. Anyway I called the on call dr. for my ob and he said that it's normal it's just me going into my first period since the c-section. So can you really go straight from the c-section bleeding to your first period? I thought your body needed time to recover so it could build up that blood for the baby and once it realizes that the body isn't pregnant then it would come.
post #536 of 610
I finally have an appointment scheduled with a hematologist, but I need some advice!

My general doctor ran I think 4 tests last fall and just said "everything came back fine". I know from experience (12 years hypothyroid before someone checked antibodies) not to ever let it go at that.

So I told the scheduler at the hematologist that I'd had a few tests run, and that they could request records. I also told her that my insurance does NOT require a referral to a specialist, and I've already gotten confirmation this doctor is in network and the visit will be fully covered.

Today someone called me back saying "We called your doctor and he hasn't seen you since October of 2008. I need to know who we are getting records from about your blood clots".

1. I'm pretty sure I had an appointment in December of 2008. 2. if I KNEW I had blood clots, wouldn't I go to the ER, or already be under the care of a specialist and not totally fine with waiting 2 or 3 weeks for an appointment? (maybe not? I figure you go to a hematologist to get diagnosed as well as to get treatment)

I think I have a bunch of risks and symptoms, but with my experience with doctors I still always wonder if it will be enough to persuade them to test me.

I have agonizingly painful periods. (TMI warning) Very heavy flow for 5-7 days, with lots of clots, usually around the size of a smushed grape or so. I also spot for at least 7 days before my period. During that entire 2+ weeks I'm in a lot of pain, often enough to make it difficult to even stand up. For the first 24 hours at least, sometimes up to 2 or 3 days, it's bad enough that even on vicodin AND baclofen, I'm hardly able to get out of bed to go to the bathroom by myself.

I have Hashimoto's hypothyroid. Even after treatment of that and of low progesterone, the periods haven't really changed. And I know having one auto-immune problem, especially Hashi's, increases the chances that you'd have another, like an auto-immune clotting disorder.

I seem to bruise very easily. I often have bruises all over my legs and sometimes arms, and often have no idea where many of them came from.

My gums almost always bleed no matter how gently I try to brush or floss.

When I was getting blood drawn for some other tests, the nurse asked me if I'd ever been diagnosed with a clotting disorder, because my blood was clotting before she could even get it into the tubes!

I've been through one failed IVF, and 3 years TTC. I know we have severe male factor but I really think it's more than just that.


Do you think these symptoms will be enough to get a doctor to run enough tests to either diagnose me or put my mind at ease? Are there other symptoms I'm not thinking of that I might have and should tell them about? Any other advice? TIA!
post #537 of 610

Lovenox vs. Heparin at birth

With my last pregnancy I was on Lovenox from weeks 28-36 and then Heparin from 36-39 (labor started naturally/homebirth...)

This time I was wondering about just staying on Lovenox and not switching to Heparin. Has anyone does this that did not have a planned induction?

From what I gather, The half life of Lovenox is 24 hours vs. Heparin's 12, but I'm wondering if the fact that I take it in two doses would make a difference. (safer than just one large dose?) If I do go to Heparin, it will be the lovely 3x a day shots, vs. my current 2x Lovenox.

I will run this by my Hematologist at my next appnt. just thought maybe someone would have some experience with this. Thanks!
post #538 of 610
Just wanted to post again and say that we are surprisingly expecting again. We are also adopting, but found out in January that I was pg. This is my 4th pregnancy. I have 1 living child, my 2nd pregnancy ended in a stillbirth at 37 wks., my 3rd pregnancy was a missed miscarriage somewhere between 10-15 weeks, and now here I am at almost 18 weeks and doing fine. I have MTHFR and PAI I.

I am on Lovenox, 100 mg shots twice a day. Heparin will come at the end at some point, but this baby will be taken by c-section as soon as it's safe to do so. Just wanted to update.
post #539 of 610
Quote:
Originally Posted by ghuaghua View Post
With my last pregnancy I was on Lovenox from weeks 28-36 and then Heparin from 36-39 (labor started naturally/homebirth...)

This time I was wondering about just staying on Lovenox and not switching to Heparin. Has anyone does this that did not have a planned induction?

From what I gather, The half life of Lovenox is 24 hours vs. Heparin's 12, but I'm wondering if the fact that I take it in two doses would make a difference. (safer than just one large dose?) If I do go to Heparin, it will be the lovely 3x a day shots, vs. my current 2x Lovenox.

I will run this by my Hematologist at my next appnt. just thought maybe someone would have some experience with this. Thanks!
Me, I was on LMWH all through my pregnancy and went into labour naturally. I was over 24 hours from my last shot, mainly because I opted not to take my shot that morning when I started having contrax. Had a natural drug free birth with no complications. I don't think the dosage amount matters, you will still have it in your system 24 hours later.

As long as you are not having bleeding issues (meaning your blood is too thin) being on LMWH will not affect your birth. Remember, they often use LMWH during surgery to prevent blood clots. As long as you aren't getting an epidural, you won't need to worry. (If c-section is necessary, you will need to be put under general)
Definately talk to the Hemo, so you have "ammo" when you talk to your mw or cp. Good luck hope that helps.
post #540 of 610
Quote:
Originally Posted by HoosierDiaperinMama View Post
Just wanted to post again and say that we are surprisingly expecting again. We are also adopting, but found out in January that I was pg. This is my 4th pregnancy. I have 1 living child, my 2nd pregnancy ended in a stillbirth at 37 wks., my 3rd pregnancy was a missed miscarriage somewhere between 10-15 weeks, and now here I am at almost 18 weeks and doing fine. I have MTHFR and PAI I.

I am on Lovenox, 100 mg shots twice a day. Heparin will come at the end at some point, but this baby will be taken by c-section as soon as it's safe to do so. Just wanted to update.
: gratz! Hope your pregnancy stays on a smooth course!
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