Women with blood clotting disorders - Page 3 - Mothering Forums

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Old 03-04-2006, 11:43 PM - Thread Starter
 
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Hey Rachel,
Congrats on your pregnancy! How is it going? I'm sorry you didn't get many replies to your request for support. I've gone back to work and am so swamped. In fact, I should be sleeping now.

I think you need to do exactly what it is that feels right to you in your heart. It's hard when that goes against the "cold hard science" of these disorders, yk? But I personally believe that your heart knows the path you need to be on and that can be whatever/wherever you want.

I'd love to hear more about your pg and your plans for birthing. Please share!

ST
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Old 03-21-2006, 08:34 PM
 
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Hey all! I have no clotting disorder, but my partner does. Y'all know so much about your disorders I realized I know next to nothing about DP's, which is truly freakish for me, as I'm usually a research nut. However, we found out about his cdo because of a barely-caught-in-time mesenteric vein thrombosis, so I think I was a little in shock for a while after, and was so thankful just to have him alive and whole that I just nodded and smiled at everything the blood specialist said - "hypercoagulopathy" "warfarin daily" "no contact sports" "regular vitamin K" "weekly blood tests" . Oy! That was two years ago - I need to get off my arse and research this stuff!

Rachel, big hugs. It is tough being a natural-living "freak" when dealing with a medical disorder. I was told by my (EX) psychiatrist that he would never prescribe psychotropics of any sort to a breastfeeding mom, "because we don't know what that does to their brains, and formula is fine!" : So although I totally am not in your shoes, I have complete sympathy for you.

ETA Oops, I was actually planning on posting a question. Does anyone know about clotting disorders in the BABY and how that might affect pregnancy? I know most of the problems (and what y'all are having to deal with) are on the maternal side, but I appear to be safe from that. Obviously DP made it to adulthood (as did his dad, who died when he was young, many-decades-retroactively-speculatively-diagnosed from a clotting disorder), but any future youngling of ours has a decent chance of inheriting his cdos, so it does make me worry a little.
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Old 03-27-2006, 02:15 PM
 
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Hi Arwyn

This is a quiet thread at the moment! Sorry its taken til now to reply to you.

Most genetic clotting disorders are not always passed onto children. I have Protein S Deficiency and had a 50/50 chance of inheriting it from my dad. Both my sister and I have PSD so as you can see you can be unlucky!

In turn, my children have a 50/50 chance of inheriting it too and I'm coming up to the time when my eldest (nearly 13) needs to be tested.

There are some conditions where if a mother and a father both have the same genetic fault this can be devastating for the child from birth causing Purpura Fulminans (Protein C deficiency is one which can cause this).

Generally speaking though most clotting disorders don't manifest themselves until the late teens or adulthood and even then having a dosorder doesn't mean you will get a clot. My sis is currently symptom free and neither of my grandparents had clots although one of them must have passed this gene to my dad.

WRT to your dh he needs to regulate his Vit K rather than have regular vit K. Too many leafy green veg or other souces of Vit K can upset the action of the warfarin and make is INR unstable.

Getting prompt treatment for MVT is often difficult to get so you are right to feel lucky.

I hope this helps - do ask more if you need to.
Best wishes
Rachel
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Old 03-27-2006, 02:56 PM
 
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I keep forgetting to come and update my situation on this thread.

I had 15 vials of blood drawn at my high risk appt. almost a month ago. The results came back 2 weeks ago and they are not good.

I tested positive for a double homozygote mutation to the MTHFR gene (A1298C). Double homozygotes have not been reported in the human population. In other words, I am the first reported case in the world.

I also tested positive for PAI-1 (4G/5G), which in and of itself, is not related to adverse perinatal outcome. I am heterozygous for this gene. However, PAI-1 and the MTHFR gene combination have a synergistic relationship, meaning they feed off each other and now there is a greater risk of adverse perinatal outcome. Also, there is very, very little known about this particular combination.

This explains what happened to Reagan and why I had such horrible complications after she was born.

Since there is so little known about this combination and how to treat it, my dr. has prescribed 100 mg. Lovenox twice a day until 36 weeks. My dose of this will change every 8 weeks. I have been on the Lovenox for almost 2 weeks and my belly is black and blue from the bruising.

At 36 weeks until delivery, I will start Heparin therapy. 10,000 units a day. I don't know what "units" are in this case.

Just an FYI, if your dr. prescribes Lovenox for you, check w/your insurance company to see if they cover it. I paid $30 copay for a 1 month supply. Lovenox runs almost $4,000 for a 1 month supply. In most cases, your dr. will prescribe Heparin instead of Lovenox if your ins. co. doesn't cover Lovenox.

, , , mama to Ross , Reagan (8/29/05), Joshua (from Haiti...here NOW due to the earthquake!), and Elijah , born safely 9-8-09.
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Old 03-27-2006, 05:36 PM
 
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Oh mama, what scary results. How are you feeling?

You are injecting a good amount of liquid if you're on 100mg so that in itself makes for more bruises. I am on 7500 units of Fragmin which is only 0.3ml which is not too bad. Can I offer you some tips for injecting? I've been doing it once a day now for about 12 weeks and my belly isn't looking too bad. My first was awful and sore for days, then two weeks ago I did a bad one and the bruise is only just fading.

I am pinching a good bit of loose belly skin (I have plenty after 3 pregnancies) and inject at an angle of about 45 degrees. You don't need to remove the bubble, keep it at the top and inject a little bit after all the liquid has gone in to 'seal' the needle track which helps to keep any blood from coming up and out.

It really important to keep a good grip on the syringe so that you don't jiggle it around as you press the plunger as that moves the needle in your skin and makes for more tissue trauma = bruises. I hold the syringe with my thumb and middle finger and press the plunger with my index finger. My thumb seems to be at the wrong angle to do it smoothly if I hold it the regular way.

Have you looked at the BabyCenter high risk board? There is a weekly thread for the 'Lovely Lovenox Ladies' and its very busy at the moment. Lots of mamas there have suffered losses due to clotting disorders and there are quite a few with unusual blood results too. I post there as Chickenlula.

http://bbs.babycenter.com/board/preg...lications/6675

Wishing you strength and courage
Rachel
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Old 03-27-2006, 05:43 PM
 
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Thanks for the tips, Rachel. s

I started out doing my own injections and did exactly as you suggested and then I started freaking myself out about them and I do not need the stress of worrying about whether I can or can't give myself the shot when it comes time. So, DH gives them to me. He's a paramedic so it's no big deal to him and it also helps me to relax knowing that I don't have to worry how I'm going to handle giving the next shot.

, , , mama to Ross , Reagan (8/29/05), Joshua (from Haiti...here NOW due to the earthquake!), and Elijah , born safely 9-8-09.
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Old 03-27-2006, 05:56 PM
 
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Amy, use a little arnica cream on your injection sites, that will help with the bruising. Also, once your body is used to the thinners the bruising settles down. But beware the funky looks from U/S techs--I didn't tell one and my doc called me laughing as I'd been reported as being abused because of the belly bruises!!
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Old 03-27-2006, 08:46 PM
 
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Hi, I'm no longer having babies. I didn't know I had Factor V Leiden until 2 yrs ago. I had my last kid 14 yrs ago and had uneventful pregnancies.

In around 1999 I went on the Pill at about age 43. I was on it for 5 yrs and then had multiple emboli after a trauma to my ankle--hit by a shopping cart. I felt OK but after 2 weeks went by I became very short of breath and congested and found out I had a big clot behind my knee and multiple clots in both lungs. Somehow I didn't die.

I was on warfarin for 7 mos. I had really heavy periods and became so anemic I was as weak as a kitten. I got real dizzy one weekend and went to the emergency room and was not very anemic, just borderline, but went in again a couple weeks later and was very anemic. My hemo took me off the warfarin at 7 mos b/c I was so anemic. She had wanted to keep me on it for 12 mos.

Between those 2 things, clots and anemia, I kind of lost a yr.

I have lowered lung capacity to this day. I had tingling and numbness in my knee area until just recently.

I didn't know 20% of the population has FVL! As the article posted above just told me. So far, we have had our oldest tested for it and she is negative. I understand the test for this blood mutation has been around since the early 90s and yet, no one tests women for it before putting them on the Pill. Having hetero FVL makes you 7x more likely to clot. The Pill also increases clotting by 7x, so multiply them together and I was a ticking time bomb. I had been on the Pill in my late teens/early 20s as well with no issues. Thank god.
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Old 03-27-2006, 09:01 PM
 
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Thanks, orangefoot - I know it's not having irregular doses of vit K that's important. His INR has been remarkably stable the last year or so, although he's not getting tested nearly as often as he should (no insurance until the beginning of this month).

Are all of you on blood thinners or other medications full time, or some only while pregnant?
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Old 03-27-2006, 09:19 PM
 
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I'm glad your Dh is doing well. My INR is often wacky despite controlling my diet which is a right pain in the neck.

I'm not on anti-coagulants permanently; I have done 6 weeks LMWH/warfarin post partum twice then LMWH and a year of warfarin after my DVT. I'm injecting now because I'm pregnant and you can't take warfarin in pregnancy although I'll be back on it after the birth probably for another year this time.

If I have another clot I will be on it permanently or whichever new drug is available at the time. There was a new drug called Exanta which has now been withdrawn after clinical trials but there are others in the pipeline which I hope might be available by the time I need them as warfarin does carry a risk of bleeds.

Darylll - I was on the pill too for a while and didn't get a clot. My hemo says between that, long haul flights and three children before getting a clot I've been very lucky!
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Old 03-27-2006, 09:29 PM
 
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Quote:
Originally Posted by orangefoot

Darylll - I was on the pill too for a while and didn't get a clot. My hemo says between that, long haul flights and three children before getting a clot I've been very lucky!
I guess I was lucky as well. In between the shopping cart and the ER, I flew to FLA from MA and back again in 4 days. I went to a big anniv party, my parents 50th, and danced and went up and down stairs and ran through Atlanta airport (which is huge) out of breath the whole time, thinking it was just May pollens or something.
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Old 04-15-2006, 04:50 PM
 
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I'm subbing here. Discovered APS due to multiple m/c. I don't know much yet. I'll know more on monday when I meet with the doc.
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Old 04-18-2006, 12:42 AM
 
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Hi! I have FVL, which I didn't find out about until after 6 months of pregnancy, and developed a DVT. I had to inject myself with LMWH once a day until 4 weeks before my due date, then it was straight Heparin. My Lord, but Heparin is a pain in the butt! I had no problems with the LMWH, other than the price(which was covered as Compassionate Care, here in Alberta) I was black and blue for months after I had my dd, due to the Heparin shots:
I was told by the specialist that took care of me that if I got pregnant again, I would have to take heparin all the way through the pregnancy, for prevention. I would also most likely get a blood clot anyway. If I didn't take the heparin, I would definately get a clot.
Now, originally, my dh and I had planned on one baby, thats it. Fast forward one baby and two years, we're throwing the idea of another baby around again.
What has been everyones experience post diagnosis with pregnancy and childbirth with FVL? I would like to have a homebirth, or at least one with a midwife, completely drug-free this time(thats if we actually decide to get pregnant again!)
Thanks is advance, I know that it will be awhile for responses, since ya'll mentioned this was a slow thread.

Darylll and Orangefoot- funny, I was on the pill too! And I smoked, but no blood clot. weird. I also had three m/c before I got pregnancy with Shekinah

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Old 04-18-2006, 12:53 AM
 
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one more thing..
Is Lovenox the same thing as Imohep? I saw a poster in the E.R for Lovenox, but it wasn't the stuff I was given. And how can you tell/find out out if your FVL is hetero or homo?
thanks!

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Old 04-18-2006, 01:17 AM
 
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Hi there, just joining in here!

I had a DVT in my shoulder when I was on the pill at age 18. I reluctantly injected heparin for the last 3 months of my first pg (I did not realize the seriousness of this until recently!) and Lovenox for my 2nd pg.

My sister just found out she has both of the MTHFR mutations, so I will be going to test for that and a few others soon. In the last 9 months my family lost my father at age 54 and my cousin at age 30 from sudden heart attacks. My sister's dr. recommended all blood relatives to have clotting tests done.

I had uncomplicated pregnancies, but bleed a lot afterbirth. I too would like a homebirth (should dh give in to having another)!

Does anyone here have any experience with irregular periods? I was wondering if it could be related to clotting mutations or not. My sister was on the pill for several years and she has not had her period for almost 5 months since getting off it.
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Old 04-18-2006, 08:41 AM
 
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Smeta

I'm so sorry to hear of the loss of your dad and cousin, my dad died just a year ago last week from a blood clotting related problem too and it shook my world more than a bit.

Neverdoingitagain

Your docs sound a bit out of date. You might get a clot if you don'tinject but the chances of getting one if you DO inject are VERY VERY VERY small. Where do docs get off scaring folk like that :

Read this for more info
http://www.bloodjournal.org/cgi/content/full/106/2/401

If you plan another pregnancy find a hematologist to give you some sensible advice first then get second opinions on everything else until you are comfortable. Over here no-one switches from LMWH (Lovenox or Innohep or Fragmin) to ordinary heparin becuase it is unstable and more difficult to administer and needs monitoring. Some US peris are also coming round to this idea but they seem few and far between. the rationale for switching is that unfractionated heparin has an effective antidote which can be used in case of the need for emergency spinal or epidural anaesthesia which is contraindicated if you are on any anti-coagulants.

From reading here on MDC I can see that in the way hospitals work where you are that is probably a sensible precaution as the temptation to slice and dice is so high

In a new pregnancy you would probably begin injecting LMWH as soon as you get a BFP but there is no way you would be given unfractionated heparin for the whole pregnancy. Run a mile from anyone who suggests that!

I am under the care of a specialist feto maternal medicine team but am also booked for a homebirth with my local community midwifery team. This has had its tensions but the mws are 100% behind attending me and I feel so much more relaxed than if I were negotiating a hospital birth.

Evrything is possible its just a matter of finding peole to support you to do what you want. It doesn't mean you are irrepsonsible or rash if you place some importance on your labour and birth.

Got to go
Rachel
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Old 04-18-2006, 08:53 AM
 
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Rachel - can you tell me more about why you would not give unfactionated heparin for the entire pregnancy?

I'm of to read your link now...if it's there don't worry. Thank you for your perspective !!
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Old 04-18-2006, 03:12 PM
 
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Hi Babybugmama

I'm sorry to hear of your losses and I hope that treatment does prove to be the magical solution for you.

ABout your question - you can google for LMWH vs UFH and you will find lots of reasons that LMWH is preferred in many clinical situations over UFH.

The main ones are that LMWH is more bioavailable so better absorbed by the body; it reduces the risk of bleeding whilst on medication; less evidence of loss of bone density and it has a longer peak action time and its effect is more regular within the body.

This last means that less monitoring is required which is also a bonus.

Did you see your specialist yesterday? What was the news? I hope that reading the link you will have some confidence in the positive outcomes of pregnancy with LMWH; it truly does carry many women to a healthy baby after many losses.

I hope my perspective isn't too scary - I'm just a bit opinionated after a few struggles and now rather well read in order to try to sort it all out in my head. I can post more links if you like but many of them refer to protocols here in the UK re pregnancy and birth which I know differ greatlt from the US.

Rachel
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Old 04-18-2006, 07:35 PM
 
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That website was awesome! I found a lot of good info, some very over my head, but some very helpful. I found one article that explained the LMWH vs UFH very clearly.

My appt is on thursday with the specialist. So, I'll take the article with me and see what they say.
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Old 04-18-2006, 07:50 PM
 
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Whoa Smeta!
thats awful! I'm so sorry to hear about your family tragedy. As irritating as my DVT was, I never really thought about it possibly killing me. Thats very scary.
Orangefoot: I'm sorry, I should have clarified the heparin comment more, I meant LMWH, not just straight heparin. Heck, no, he would never suggest straight heparin all through the pregnancy. If they knew how dedicated I was to not having a c-section or an epidural, they probably would have let me go through the whole pregnancy on LMWH. I was FTM though, so they couldn't be certain of how I would react during my labour.
I gave birth at Foothills Hospital, which is actually not too keen on c-sections, and really advocates bf( and is the home of the specialist I worked with) He specialized in thrombosis in pregnancy, so I'm hoping he was a fairly current! Lord knows he isn't an OBGYN, so he didn't say much about my pregnancy(the OBGYN specialist did though, and I'm NOT going back to him!)
Still, I have a lot of research to do. From the sounds of it so far, this might not be the impossible task that it originally seemed!
Only problem, like I said earlier, is cost. We have 80% coverage, which will still work out to about $200 a week Gulp.

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Old 04-18-2006, 08:48 PM
 
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I was wracking my brain trying to figure out the name of the specialist that treated me.
He is part of a clinical trial called "TIPPS". Have you heard of it?
heres the link
http://www.ohri.ca/programs/clinical...t_is_tipps.asp
I'm still looking at the website you linked on here. Very interesting!

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Old 04-21-2006, 01:34 AM
 
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Hi all. Just found this thread through the pg forum.

I have FVL, hetero, and Protein C deficiency. We discovered this when I developed a superficial clot after no trauma a few years before pregnancies. I've been on Lovenox with all three pgs (I'm on #3 right now), and with the first 2 I continued it for 3 months post partum. This time I'm going on Coumadin post partum, so I'm glad to be avoiding 3 months of shots.

I've thankfully not had a DVT . . . and hope to continue that. My mom had a DVT with one pg and a clot in her lung with the other! She's never been tested for any disorders (of course her clots happened loooooong before the tests were developed). She most likely has Protein C deficiency, also, due to her history and the fact that I have it. My dad has FVL and Protein S deficiency, we found out when he had to have heart surgery a few years ago . . . so we've a bit of history in my family.

Someone asked a while back in the posts how you find out if you're hetero or homo for FVL . . . it's on the lab report for the blood test. If you do not have a copy of the report yourself, call your hematologist (or whoever ordered the test) and ask them to look it up in your file.

Never knew so many people had clotting issues . . .

Jen, mom of R (9), T (7), C (5), and E (2) ... my stillheart.gifs

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Old 04-21-2006, 09:59 AM
 
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After thinking a long long long time about it, I've decided I want to ttc again. I moved last summer so I just got in yesterday to see my new PCP. He wants me to see a hematologist in order to get Lovenox - didn't even want to look at the labs I had that showed where I was diagnosed, or the copies of my previous scripts. I have an appt on May 1 with a new gyn (who is supposed to be pretty crunchy and VBAC friendly). so I'm going to explain everything to him and ask for the meds.

This is *really* frustrating - I get pregnant very easily (lucky, I know), but I also miscarry just as easily. Because my antibodies are so high, I can't wait until I get a BFP to start the injections - I have to start right after I O. I'm supposed to get AF on Monday, so that'll put me on cycle day 8 at my appt - everyone keep their fingers crossed that everything will work out timing-wise.
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Old 04-22-2006, 02:05 AM
 
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I was recently hospitalized with a pulmonary embolism in each lung. I just found out that there is a problem with my MTHFR. My doctor (a resident) didn't know much about MTHFR.

Now I have read that MTHFR is associated with miscarriage. I had at least 3 miscarriages. These were the ones confirmed by older pregnancy tests in the 1980's. I may have had 2 or 3 more that I hadn't gone to the doctor to have a pregnancy test.

It's so wonderful that there is now a drug that can help pregnant women with clotting disorders. My miscarriages were so difficult on me and my marriage. I have three sons, now 27, 23, and 18.

My 23 year old son is a nurse on the cardiac floor of the hospital where I was recently hospitalized. He may have saved my life. My idiot doctor was going to send me home saying I was just out of shape when I had pulmonary embolisms. My son knew I wouldn't call 911 if I wasn't in a LOT of pain. He pressed the doctor to do the right imaging exams. I was hospitalized a week!

: Grandmother , 3 Adult Sons

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Old 04-22-2006, 02:18 AM
 
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Whatever~ That's great! I wish you luck with that. Here's to hoping that everything goes your way. Though it sucks that you would have to start injecting that soon.

Forever~ I'm so sorry to hear that, sounds really scary! I hope you're feeling better. Too cool about your son good for him, for being your advocate.

I'm really surprised how long it takes for some people to get symptoms. It seems so random. Fees like Russian roulette.




okay, am I the only one that sees MTHFR, and thinks m*therf***er?
Sorry,I can't help it!

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Old 04-22-2006, 07:07 AM
 
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MTHFR although, what *does* it stand for?

There are so many different ways to have clotting disorders...

Whatever, my ob wasn't willing to put me on the shots until I conceived. His concern was that the implantation occur in the uterus and not in the tubes or somewhere else. I'm getting my first u/s thurs and if angelbaby is where he/she is supposed to be then away we go...

Can anyone tell me what are the side effects of Lovenex, how does it affect baby, and what is the protocol in a pregnancy - throughout, until a certain point, etc.
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Old 04-22-2006, 04:06 PM
 
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Quote:
Originally Posted by babybugmama
MTHFR although, what *does* it stand for?
Well, what I heard it stands for you can't post that kinda language here at MDC

Seriously?
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Old 04-22-2006, 04:19 PM
 
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Babybug

The link I posted before is about as comprehensive as it gets on why LMWH seems to work.

Lovenox is a LMWH and as such has molecules too large to cross the placenta. What it does is switch off the cltting process at a point when your body ysyally would but in our case that something which triggers the 'switch off' is not working as it should.

In my own head I am not too concerned about side effects because I know that the effects of NOT injecting are truly terrible. I don't want to be pregnant with another DVT in my other leg leaving me unable to stand for weeks or a PE - or a clot somewhere less easily detectable like my dad had.

As I said before I am on this until I go into labour then I won't inject til about 12 hours or so after, however this seems to a UK protocol and in the US peris often advise switching to unfractionated heparin at 36 weeks or so and inducing labour sometime around 38 weeks.

There is a big old weekly thread on babycenter under High risk pregnancies of women who are on Lovenox if you read there you will see what is happening with most people.

I hope everything looks good when you have your scan. Somewhere on this thread I posted my collected (from other ladies) top tips for injecting - do shout if you need encouragement!

Rachel
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Old 04-23-2006, 04:19 PM
 
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Quote:
Originally Posted by babybugmama
MTHFR although, what *does* it stand for?
It stands for methylenetetrahydrofolate reductase. It's a term I've come to know well over the last 6 wks. or so. I am a double homozygous carrier for the A1298C gene. Very, very, very rare.

, , , mama to Ross , Reagan (8/29/05), Joshua (from Haiti...here NOW due to the earthquake!), and Elijah , born safely 9-8-09.
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Old 04-23-2006, 09:16 PM
 
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Originally Posted by neverdoingitagain
okay, am I the only one that sees MTHFR, and thinks m*therf***er?
Sorry,I can't help it!
My doc says that's the way he remembers it. I must admit I found his swearing to be rather endearing

Lisa

Lisa , married to Dan, mama to IVF miracle Natalie 5/20/09 :
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