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Women with blood clotting disorders - Page 30

post #581 of 610
I'm glad you feel more confident about that now and I think injecting yourself is better than someone else doing it once you get used to it! You just need to bite the bullet and remember each one you do is one less to get done.

Here are my tips:

Lie down and bend your knees so your feet are flat against your comfortable bed.

Make sure the bubble is at the plunger end of the syringe not near the
needle end. Hold the syringe like a pencil with your thumb and middle
finger with your first finger on the plunger. The bevelled edge of the
needle should be face up.

Pinch a good inch of skin somewhere low on your belly - you'll lose sight of this part of your belly after a while so its good to use it while you can.

At this point you might want to remind yourself to take a few breaths and relax.

Poke your skin a bit with the needle. If it hurts a lot poke another place
until you find a bit that doesn't feel too stingy. There are some
places where the nerves seem to be more 'alert' than others - honestly.

Once you have found a good place tilt the needle to a 45 degree angle and
push the needle in pointy edge first as far as it will go. Now hold very still and press the plunger with your first finger as slowly as you can. Once you have pushed in all the liquid and you have only bubble left pull the needle
out and let go of your skin. And keep remembering to breathe!

Fingers crossed for you

Rachel
post #582 of 610

Blood thinners & breastfeeding?

Hi everyone, my name is Crystal, and I was diagnosed with Factor V Leiden in 2006. I've never had a clot, myself, but was tested after my sister discovered she carried the gene. She had a stillbirth and then a pulmonary embolism within a three week period. The rest of my family were tested, and we discovered that my mother, brother, grandmother, and almost all of my mother's siblings also carry a copy of this gene.

When I was pregnant with my son I was put on blood thinners as a precaution. Now I'm pregnant again, and my OB's office wants me back on them. They want to prescribe Arixtra (generic name is Fondaparinux) and said that it's a better fit for my particular clotting disorder. But this confuses me, because all of the research I've read, and everything I've heard from other women who have FVL, is to go on Lovenox. Has anyone else here been put on Arixtra?

My main question is, is this safe while breastfeeding? My 2 1/2 year old still nurses several times a day. When he first wakes up, before & after nap, and before bed...and whenever he's sad/hurt/frightened/tired/overwhelmed/overstimulated/bored during the day. Right now my OB's office, my son's pediatrician's office, and my La Leche League leader are all searching for information on if this is safe or not. I know that immediately after my son was born they just kept me on heparin and I was nursing him then...but I don't know if arixtra -- or lovenox -- are OK while breastfeeding a toddler. I don't want to wean him cold turkey, so I'm feeling really overwhelmed and uncertain right now. Anyone have any advice or info?
post #583 of 610
Lovenox is safe to nurse with. The molecules are too large to get into the milk.
post #584 of 610
Thank you so much for your responses! I just called my son's pediatrician's office back, and the nurse found some information on lovenox that she's printing out for me. So then I called the OB's office, and told them what I found on Dr. Hale's website, as well as what the pedi nurse found. I have to bring that info to my OB's office, and then they'll prescribe the lovenox for me. What a day.

I have to say...after digging around and doing the research and being an active participant in my medical care, I'm feeling so much more capable and in control. I hated that feeling of helplessness that I had all through my last pregnancy, so I feel like I'm already off to a much more positive start!

Thank you again for your answers, you've set my mind at ease!
post #585 of 610
I am unsure as to why you would choose lovenox over fondaparinux? New is good as far as anti-coagulants go! Fondaparinux is a pentasaccharide which has been proven to be more effective in VTE prevention than Lovenox with just one daily injection.

From what I have read, it is active more quickly and acts more effectively. It is one of the new Anti factor Xa antagonists and this is where all the research into anticoagulants has been focused in the last 10 years since the initial wave of LMWHs were designed.

Fondaparinux is synthetic and not made in porcine mucosa like Lovenox or Fragmin or Clexane. Women who are religiously prohibited from eating pork have been prescribed Fondaparinux in pregnancy for some time now.

The only reason my haematologist started me on long term coumadin is because he is sure that an oral Anti Factor Xa is on the horizon in the next year or so to replace it and it will be much much safer for me to take than coumadin as the Xa meds produce very low incidence of bleeding and need no monitoring.

On the breastfeeding front, if you google the combo of coumadin, lovenox, Fragmin or any other LMWH or anti-coagulant and breastfeeding you will find 'research' and 'advice' telling you they aren't safe either. I'd speak to a heamatologist about the molecule size of the fondaparinux and compare that to the Lovenox before ruling it out.
post #586 of 610
Quote:
Originally Posted by orangefoot View Post
I am unsure as to why you would choose lovenox over fondaparinux? New is good as far as anti-coagulants go!
I'm sure there's no denying that. As far as my OB is concerned, with the information available to him, if I was to be prescribed fondaparinux, I'd have to wean my son. Cold turkey. I can't and won't do that to him. Not when it's been such a source of comfort and security for him for the past 2 1/2 years. Yes, I do want him to wean during the course of this pregnancy, but I don't want to force an abrupt weaning..that seems incredibly cruel. So the options, as they were given to me, were to wean and go on fondaparinux, to take nothing but a baby aspirin, or to go back on lovenox.

I've never had a clot. Never experienced a pregnancy loss or had any other complications due to FVL. At this point, I'm on the blood thinners as a precaution, and one that very well nay be unnecessary -- there's no way of knowing. If I had a personal history of clotting or pregnancy losses they'd be treating me differently, I'm sure.

Quote:
Originally Posted by orangefoot View Post
On the breastfeeding front, if you google the combo of coumadin, lovenox, Fragmin or any other LMWH or anti-coagulant and breastfeeding you will find 'research' and 'advice' telling you they aren't safe either. I'd speak to a heamatologist about the molecule size of the fondaparinux and compare that to the Lovenox before ruling it out.
I do have an appointment with my hematologist, but not for another three weeks. He's on vacation this week, I'm away on vacation with my family next week, and he was booked both last week and the week after my vacation. I can talk with him about lovenox vs. fondaparinux at that appt, and he may recommend switching me over then. Or maybe they'll switch me over when my son (hopefully!) weans in the coming months. But with such a long delay until my appointment, neither my OB nor I were comfortable with me waiting that long before starting on any particular blood thinner.

I know research and advice on the safety of any medication while breastfeeding can vary. Drug companies and many doctors tend to err on the side of being extremely (overly?) cautious in regards to this. Both my LLL leader and son's pediatrician's office found their info in the latest edition of Dr. Thomas Hale's "Medications and Mother's Milk," so I'm pretty comfortable with the decision to start on lovenox at this point in time.
post #587 of 610
Sorry, I wasn't saying that Lovenox was a bad thing, at all! Just that Fondaparinux is worth considering with a hemo not an OB. OBs are not experts in blood clotting despite what they might like to think!

You would not believe how many OBs still tell patients that they can't breastfeed on Lovenox or coumadin. I've been reading clotting forums and threads since the start of the millennium and I had hoped that by the time we got to this decade docs would have stopped giving such poor breastfeeding advice...maybe by 2020.

I have Protein S Deficiency and have been lucky to have four children but I have also had a DVT and been on and off Fragmin and coumadin since my second pregnancy in 1997. The fact that you are being treated at all is a sign of the times as 5 years ago they wouldn't have thought it was worth it.

Good luck!
post #588 of 610
Quote:
Originally Posted by orangefoot View Post
Sorry, I wasn't saying that Lovenox was a bad thing, at all! Just that Fondaparinux is worth considering with a hemo not an OB. OBs are not experts in blood clotting despite what they might like to think!

You would not believe how many OBs still tell patients that they can't breastfeed on Lovenox or coumadin. I've been reading clotting forums and threads since the start of the millennium and I had hoped that by the time we got to this decade docs would have stopped giving such poor breastfeeding advice...maybe by 2020.

I have Protein S Deficiency and have been lucky to have four children but I have also had a DVT and been on and off Fragmin and coumadin since my second pregnancy in 1997. The fact that you are being treated at all is a sign of the times as 5 years ago they wouldn't have thought it was worth it.

Good luck!
Thanks, I understand completely. I'm looking forward to meeting with the hematologist and sorting this all out with him. It's amazing -- and discouraging -- just how little many doctors actually understand about breastfeeding, even now. I think their gut reaction is often to recommend that a nursing mother wean when beginning new medications. My former primary care physician tried to prescribe me an antibiotic for a respiratory infection when my son was only 8 or 9 months old, and told me I'd have to stop nursing. I'm just grateful that I asked her for alternatives, and wouldn't let it go until she looked up a safe antibiotic in Hale's book. I wonder how many mom's weaned their babies unnecessarily, due to her advice.

Thank you for all that you wrote -- I'm planning on talking with my hemo about the pros & cons of taking either Lovenox or Fondaparinux, and you've gave me quite a few talking points! I appreciate your help!
post #589 of 610

Hemophilia Questions

Hi all... Not sure if this is the right place to post this, so feel free to move it if I'm wrong. I'm looking to see if anyone has experience with Alpha Hemophilia (factor VIII deficiency) - specifically having a son with hemophilia. I may be a carrier (my mom is an obligate carrier), and am not sure if I want to be tested or not (as even if I am a carrier, I am not affected). My questions for anyone who has had a son with hemophilia are: Where/how did you birth (e.g. home/birth center/hospital, vaginal or CS, and if CS, was it due to hemophilia or other factors?), were you considered 'high risk,' did you find many people during your pregnancy and birth that were knowledgeable about hemophilia and birth (midwife/hospital staff/OB/etc.), if you had it to do-over again, what would you have changed (e.g. would have chose to deliver elsewhere/vaginally/via CS, etc.), and any other tidbits that you'd think would be helpful!

Thanks!

--Rainy
post #590 of 610
Quote:
Originally Posted by aisling78 View Post
I'm sure there's no denying that. As far as my OB is concerned, with the information available to him, if I was to be prescribed fondaparinux, I'd have to wean my son. Cold turkey. I can't and won't do that to him. Not when it's been such a source of comfort and security for him for the past 2 1/2 years. Yes, I do want him to wean during the course of this pregnancy, but I don't want to force an abrupt weaning..that seems incredibly cruel. So the options, as they were given to me, were to wean and go on fondaparinux, to take nothing but a baby aspirin, or to go back on lovenox.

I've never had a clot. Never experienced a pregnancy loss or had any other complications due to FVL. At this point, I'm on the blood thinners as a precaution, and one that very well nay be unnecessary -- there's no way of knowing. If I had a personal history of clotting or pregnancy losses they'd be treating me differently, I'm sure.



I do have an appointment with my hematologist, but not for another three weeks. He's on vacation this week, I'm away on vacation with my family next week, and he was booked both last week and the week after my vacation. I can talk with him about lovenox vs. fondaparinux at that appt, and he may recommend switching me over then. Or maybe they'll switch me over when my son (hopefully!) weans in the coming months. But with such a long delay until my appointment, neither my OB nor I were comfortable with me waiting that long before starting on any particular blood thinner.

I know research and advice on the safety of any medication while breastfeeding can vary. Drug companies and many doctors tend to err on the side of being extremely (overly?) cautious in regards to this. Both my LLL leader and son's pediatrician's office found their info in the latest edition of Dr. Thomas Hale's "Medications and Mother's Milk," so I'm pretty comfortable with the decision to start on lovenox at this point in time.


FVL has incomplete dominance, which means that it may, or may not, ever cause a blood clot.

I found out about my FVL (and Factor II, as well) AFTER the completely healthy birth of my second child. My OB said, "Wow, if I had known, we would have treated your pregnancy completely differently," which made me really glad she (and I) didn't know!

My younger sister, who also has FVL and Factor II, decided to just take blood-thinners during the 6-week postpartum period and not during her whole pregnancy.
post #591 of 610
Rainy

I have a very dear friend who is a haemophiliac and is now just over 40 years old. He isn't in the best of health after receiving contaminated blood products and having damaging bleeds but he is a lovely bloke and has four children - two boys and two girls. Things are much better for young haemophiliacs now than they were when he was a child and there are lots of support groups for families too.

He has two older brothers who are unaffected and it was a shock to his mum when she found that she was a carrier when he was a young child.

Have a look here
post #592 of 610
Orangefoot, Thanks for the quick reply! I'm TingTC after literally years of research on current hemophilia treatment... I knew from the start that if I ever became pregnant, I would not choose to terminate or selectively reduce any pregnancy, which means that if I happen to have inherited my mom's gene for hemophilia, and happen to give it to my son, that I am (for lack of a better word) okay with that prospect. I wouldn't wish a chronic, life threatening disease on anyone, but when you add up treatment and quality of life, if it were me, I'd at least want a chance. (All - Please realize that I am speaking for myself only, and I am not in any way suggesting that what's right for me and my family should be right for you or yours, or vice versa!)

I'm really hoping to find out if anyone knew, as I do, ahead of time that their son might have hemophilia (or she might be a carrier), what choices they made with their son's birth. I've read studies that say a CS is required for safety, and others that say that a vaginal delivery is best. I really want to be prepared for this discussion, armed with as much as possible for the best outcome...

Thanks!

Rainy
post #593 of 610
Hi Everyone!

I have a question, I hope there is someone out there who might know a little bit about this. My OB requested a special panel on my blood because my sister, when she was just 19, had a blood clot. At the time she was a drug user, smoked 2 packs a day, was overweight, was eating almost nothing but ice cream and was on the NuvaRing for month prior to the clot. I have none of those risk factors at all. But my OB insisted I may have "sticky" blood.

I had the screenings and the results showed I may have the opposite issue! That my blood doesnt clot enough! What are the chances of that?! Anyways, Im worried that I will not get to have a VBAC now, because no one will want me as a patient when I have an increased risk of bleeding as it is due to my c-section 3 years ago

Here are my results:
D-Dimer, QN was High with .54 mcg/mL FEU (reference range <.50mcg/mL)
Protein S Activity was Low with 45% normal (reference range 70-150% normal)

The results also showed my red blood cell count was low (3.52 million/uL), my hemoglobin was low (11.4 d/dL) and my hematocrit was low (33.4%).

If any of you ladies have had smiliar results, I would greatly appreciate any information you can give. Especially pertaining to labor and delivery.

I have never had a M/C that I am aware of. And I already have one healthy term baby who is now 3 years old.

Thanks in advance for any help!!!
post #594 of 610
Hi Rainy, I was actually just on here for the same thing! I am a Factor VIII Severe Carrier of Hemophilia, we found out after my son was born in 2005.
Where/how did you birth (e.g. home/birth center/hospital, vaginal or CS, and if CS, was it due to hemophilia or other factors?), Since my son was a surprise (in terms of hemophilia) he was a normal, medical-model childbirth (pitocin, epidural, vaccuum extraction) After birth he continued to bleed from the vaccuum, and that's one of the ways we found out. This time around (due Aug. 23) I will give birth at a birthing center within a hospital, will not have an epidural, and vaccuums, fetal scalp monitoriang, and forceps are contraindicated. They do not recommend routine C-sections. I printed off the MASAC recommendations from NHF http://www.hemophilia.org/NHFWeb/Mai...contentid=1436 and put them in my chart and discussed them with all of the OBs. were you considered 'high risk,' did you find many people during your pregnancy and birth that were knowledgeable about hemophilia and birth (midwife/hospital staff/OB/etc.), I was not considered high risk, and neither is the son I'm surrently pregnant with (unknown hemophilia status, as I did not feel like doing an amnio or CVS). I have not found many people to be exceptionally knowledgeable about hemophilia--I feel like I have to give a five minute educational spiel (luckily I'm a teacher). My OB only has experience with thrombophilia, a completely different animal, but he always talks to me and listens to my concerns and has interfaced with my son's hematologist to doublecheck everything. I feel good about the coming birth. The birth center I'm going to has a prenatal check with a nurse, and we talked for a while and she made notes all over my chart in case she's not the one I have when I deliver. if you had it to do-over again, what would you have changed (e.g. would have chose to deliver elsewhere/vaginally/via CS, etc.), and any other tidbits that you'd think would be helpful!
In your situation, I might get tested just so you would know whether there's a possibility or not (and since carrier testing is easier than in-vitro testing), since if you're not a carrier you wouldn't need to worry about it, KWIM? That may include genetic testing of your mom first, though, which can take quite a while if you don't have the "normal" mutation. We're definitely immersed in this right now, so ask away if you have any questions.
Quality of life-wise, I would say my son doesn't even realize he's any different from anyone else. He is severe (undetectable clotting factor VIII) but presents as a mild/moderate (requires treatment 6 or 7 times a year). We've been told he won't be able to play hockey, football, wrestling or boxing, but that other sports are fair game depending on how he tolerates it.
I am not really worried about pregnancy/birth, as most hemophiliacs have no problems with a normal pregnancy and uncomplicated vaginal birth. (And my first son was 9 lbs, 1 oz, so I wouldn't even opt for a c-section for thinking he was big, either. If you did have a traumatic birth, though, they may want to ultrasound the baby's head to check for an intercranial hemorrhage) I think the most important thing is to find an OB who is comfortable with the possibility, and who listens to you, since you'll probably be more knowledgeable than most medical personnel.
post #595 of 610
Also, on the possible Factor VIII carrier status, you could be a symptomatic carrier. The test is fairly simple, a Factor VIII assay, though you'll probably have to go to a lab or the hospital, and will let you know where you fall. Normal is 50-150, mine is 52 , though we didn't know that before my son's birth. Apparently symptomatic carriers are more at risk for bleeding into the spinal column with an epidural--the cutoff for safety's sake is 50. So I would want to know that going in as well (in case you need an emergency c-section or something). Your factor levels do go up in pregnancy, though, so levels pre-pregnancy will change and they'd probably want to run the test again in the third trimester. Just something else to think about. HTH.
post #596 of 610
Bebegim

Have you seen a haematologist to explain the results to you? Are you pregnant right now? Did your OB tell you that you are at risk of bleeding?

Low Protein S is called Protein S Deficiency and does predispose you to clotting problems. I have PSD and have had a DVT. You can only get a true Protein S result when you aren't pregnant because Protein S is naturally lower in pregnancy which is thought to be an ancient protection against excessive blood loss post partum.

Testing D Dimer is only usually done if you have symptoms of a clot right now as this is the chemical that a clot gives off when it is growing and is easily detected. I'm not sure what it tells you if you don't have any symptoms.

Low red blood cell count, low hemaglobin and low hematocrit can be signs of anaemia (lack of iron), inflammation or lack of minerals and vitamins.

To find out more about Protein S Deficiency have a look here I'm orangefoot on the forum over there too.
post #597 of 610
Hi Ladies,
I hope you don't mind my joining in! I am currently 16 weeks pregnant and on Innohep (a low molecular weight heparin, similar to Lovenox)and have been since I got my BFP. I have had four missed mc's and one DD (one m/c prior to DD, 3 after) prior to this current pregnancy. We finally did testing and found that I am homozygous for MTHFR, have the PAI 1 4G/5G gene, Protein S deficiency and antithrombin III! We think these were likely the cause of the prior miscarriages.

Hoping that this pregnancy continues to progress normally. Can't say I love the injections, but they aren't too bad. Still waiting to figure out what my caregivers opinion will be regarding repeat C/S versus VBAC (I am living in Germany, so I honestly don't even have a clue what their stance is!).

Thanks,
Tracy
post #598 of 610
Quote:
Originally Posted by orangefoot View Post
Bebegim

Have you seen a haematologist to explain the results to you? Are you pregnant right now? Did your OB tell you that you are at risk of bleeding?

Low Protein S is called Protein S Deficiency and does predispose you to clotting problems. I have PSD and have had a DVT. You can only get a true Protein S result when you aren't pregnant because Protein S is naturally lower in pregnancy which is thought to be an ancient protection against excessive blood loss post partum.

Testing D Dimer is only usually done if you have symptoms of a clot right now as this is the chemical that a clot gives off when it is growing and is easily detected. I'm not sure what it tells you if you don't have any symptoms.

Low red blood cell count, low hemaglobin and low hematocrit can be signs of anaemia (lack of iron), inflammation or lack of minerals and vitamins.

To find out more about Protein S Deficiency have a look here I'm orangefoot on the forum over there too.
Thanks you so much! My MW ordered a very random collection of tests because she really had no idea what she was doing... in fact the computer wasnt working, so her and the assistant were absolutely dumbfounded as to which tests to order me. Im 21 weeks pregnant now. Apparently both tests can be elevated during pregnancy (at least thats what it says on the lab quest results). The reason they ordered it was because my sister had a DVT in her leg at the age of 19. It cleared up after a few months of blood thinners and a long hospital stay.

My MW and the OB, neither could explain anything about the results to me at all. The actually told me the results meant the opposite, that I was at risk for excessive bleeding. I just feel like, how could they possibly get that wrong? They clearly put in no effort at all to figuring out even the minimal amount of information for me. and now they want me to go to a different OB at Johns Hopkins. The whole thing is irritating me. I told her I wanted the results to take to my sisters hematologist, and you know, I got the ..."oooh, uh, well a hematologist isnt what you need to see, because this could complicate your pregnancy and delivery." Oh brother!

Needless to say. I will be calling my sister's Dr. tomorrow morning to have him read the results. I anticipate him thinking they are crazy for ordering such a random collection of tests. I will also be switching MW's asap! They were also super rude to me about the whole thing. Like I was being incompetent in some way. As if I needed another reason to loathe the medical establishment!

Thanks again for posting back. It was a huge help!!
post #599 of 610
Gunnarsmama77 - THANK YOU for your comprehensive reply! I REALLY appreciate it!!! It's nice to hear that pre/peri/postnatal practitioners may be more willing to listen than the previous providers I've discussed hemophilia with (renew rx for birth control several years ago - the doc wanted FOURTEEN blood tests before she was going to write the rx because "if you just keep bleeding, that could be bad." Really?! continual menstural bleeding is bad? I'm sure I never would have figured that out, even if I didn't know anything about hemophilia! ) I'll certainly follow your lead on taking published studies with me to any and all practitioners when (and if ) I am pregnant. On a side note, I'm not sure if I will ever test - I can't imagine anything changing in my plans - I wouldn't alter plans for pregnancy, natural birth, avoidance of medications/vaccinations for a while, etc. - and if I do have a boy and he's affected, that answers the question - I must be a carrier... if he's not, it's still up in the air.

Thanks again!

--Rainy
post #600 of 610
Glad I could help! PM me if you need anything!
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