Factor V Leiden- blood clots?

[Sonya]

OK, there is a big sample of people here on the Dis and I figured someone else would have this problem. So I am looking for others' experiences with this.

When I had DS I had problems with my lungs filling with fluid, and they don't know why. The best guess is that I had a blood clot and it travelled. They did do tests on me at the time to see if I had a clot but nothing turned up.

This time my specialist did some more blood work on me and the Factor 5 came back postiive. Which means I am at a higher risk for blood clots. It is inherited, and it affects people mostly from northern Europe heritage.

My Dr has put me on a baby asprin a day, but from what I have read some people are put on anticoagulants. (sp?)

I don't really need any websites that deal with this, unless they are very very good, I feel I have enough knowledge (I have a good Dr!) but I am wondering if anyone else here has this and what meds you are on, and how this has affected your life.

Thanks!

 

[ClarabelleCowFan]

My brother and I both have genetic clotting disorders but different ones. He has an anti-thrombin III deficiency and I have hyperhomocysteinanemia. He is on coumadin (as is my Mother) but I am on Metanx to raise my homocysteine level but that medicine is not an anti-coagulant. I see my Hematologist twice a month and my blood levels are checked. My type of clotting disorder makes me more prone to clots but I can get them in my arteries or my veins (my Hematologist calls it "DVT Plus"). I take the usual precautions - wearing stockings on long flights, getting up and stretching my legs as much as possible, etc...

I have had a couple of clots in the past and had to have shots in my stomach to break them up.

My OB and my Hematologist have been great about communicating about my clotting issues and my pregnancy.

Good luck! They aren't fun!

 

[Jpgirl]

I have a neice and a sil with blood disorders-one of them has yours. It's not as uncommon as you think-it's just not dx'ed unless a problem crops up like yours. My sil found out b/c she was having some routine dental work done. My neice found hers b/c she kept having miscarriages. Good luck to you

 

[NEVERENOUGHWDW]

I have low protein S & have had DVT & PE...have been on Lovenox (daily shots) or Coumadin for over a year. I was seriously ill and it was/is scary at times. I still go for weekly blood tests for my clotting time.
It has changed many things in my life......

 

[james'mommy]

My sister is factor V positive. When she had my niece and newphew she had to be on blood thinners each time. Her stomach looked like a big bruise by the time the babies we born from all the needles.

 

[Sonya]

You have to take blood thinners byshots in your belly?!?!?!?!?

 

[Blondie]

Factor V Leiden attributed to my father's death in 2005. After the docs found out he had it, we (my brothers and I) got tested as well. I tested positive, but my docs don't want me on any medication at this time. They told me since I survived childbirth without hemorrahaging to death, I'd be okay.

If I ever have any kind of surgery though, they'll take every precaution.

 

[Poohnatic]

I also have Factor V leiden. I'd had a DVT 7 weeks after having my older son, which is extremely rare. When I became pregnant with my younger son, I was rapidly informed that I was high risk and was immediately put on blood thinners. I gave myself six injections of heparin a day. Yes, the shots were a neccessary evil and my belly HURT, but the end result was worth the effort. I went through a bunch of testing to determine *why* I had a DVT and that's when we found out I had that and a high ANA.

I think that because you have no proven clot, they're starting with the aspirin. I've been on aspirin therapy, post partum. This is due to having three other clots, but I cannot continue aspirin now with the other health issues. However, I'm on my last strike-another clot puts me on lifetime Heparin or plavix. You'll probably be monitored a little more closely and get blood tests (pro thrombin times) to check how quickly your blood clots. If it is clotting quicker than what your doctor is comfortable with, you may be stepped up to injections of heparin. They're not so bad, but your belly will look a little scary from injection bruises.

The Factor V Leiden is also an indicator of lupus, so after your princesses arrive, you may want to check your levels again to see if they're still indicative of having FVL. Your doctor may suggest this, too.

You also may want to watch your intake of vitamin K, because that causes your blood to clot. You can consume, but don't overindulge in leafy greens. Broccoli, spinach, kale, swiss chard. When I first had the DVT, the nurses in the hospital told me NO vitamin K and I complained to the doctor that it was very hard eating with no broccoli or salads. He told me I could have them, but not too much.

Good luck. You'll get through this, I think the doctors are used to this appearing in pregancy.

Suzanne

 

[PaulaSue]

I hope it all turns out well. My GF's DS has it and had a stroke in the womb right before his birth. Reminds me I should call her and see how they are doing.

 

[ClarabelleCowFan]

You have to take blood thinners byshots in your belly?!?!?!?!?

Yep! I was in the ER with a clot while pregnant and have to have shots in the belly. I remember the nurse drawing my blood and saying "gee, your blood sure clots fast". Why the heck did she think I was there in the first place?

 

[Sonya]

Wow, the only thing my genetic councellor and the specialist told me was that I would take baby asprin for the rest of my life, don't take bc pills, no smoking, an when I fly to walk a lot. Also let my kids know so they can be tested.

Maybe they didn't want to scare me?

 

[ClarabelleCowFan]

Sonya - find a good Hematologist in your area and let them do a complete workup. This is their area of expertise so let them give you another opinion.

 

[Poohnatic]

Sonya,

It could be that you aren't clotting too fast. The baby aspirin may be enough to prevent your issues. I'd had a depo provera shot and was told no more after it wore off. Yes, you have to find alternatives, but they work

You've got a team around you that knows far more about your issues than we do, so follow their advice. They probably didn't scare you because they didn't need to-just the heads up and aspirin can often be enough.

Suzanne

 

[1Prince2Princesses]

I had a DVT and PE while I was pregnant with my last DD. I was 2 weeks overdue, so they transported me to a high-rish hospital and started blood thinners by IV immediately. After a couple of days, they gave me something to reverse it, did a c-section, then started me on the shots. It was Lovenox, twice a day. I also took coumadin by mouth for almost a year. I just take aspirin now, but I worry about it often.

I know I can't ever take any hormonal pills, like birth control or estrogen. While I was being monitored weekly, my Dr told me to keep my consumption of Vitamin K consistent, and what I would normally eat, so they could adjust my meds accordingly.

I hope everything turns out well for you. Hopefully this is something that will vanish after your daughters are born!

 

[Sonya]

I hope it all turns out well. My GF's DS has it and had a stroke in the womb right before his birth. Reminds me I should call her and see how they are doing.

Gosh thanks, I don't really need to be this scared while pregnant. WWYT?

 

[NEVERENOUGHWDW]

Wow, the only thing my genetic councellor and the specialist told me was that I would take baby asprin for the rest of my life, don't take bc pills, no smoking, an when I fly to walk a lot. Also let my kids know so they can be tested.

Maybe they didn't want to scare me?

Sonya I would get this checked out by another physician.........Good Luck!

 

[apirateslifeforme]

My mother has this. We had no idea until she started taking menopause hormones and suddenly she had a clot behind her left knee and one on her lung. She was in the hospital for a week, on some kind of IV (sorry, I don't remember what it was called) to dissolve the clots, then she was on Coumadin for six months or so. She had been diagnosed a few years earlier with Graves Disease and just before she had the clots, she'd taken radiation to kill the thyroid. Her doctor is not sure if that or the hormones, in combination with the gene, was what caused the clots. It just all happened at once, it seems.

That was 3 1/2 years ago - she is no longer on the Coumadin or the hormones. She now takes Synthroid because she is hypothyroid, but that's all.

And this reminds me...since it's genetic, I really should be tested, too.