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What level Protein S would this be?


Guest faith23

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Guest faith23

Ok i guess i wasn't informed about if I was I,II, or III. My PSD levels were 13 right after giving birth to full term stillborn. The results were not back before I developed a DVT in the Left Illieac Vein. I spent some time in ICU and went through 2 surgeries to help disolve and insert a radioactive stent. (ok brief background)...now since then i was told in Sept not to try to have more children( ByOB) because it was too dangerous. And that I would be on Coumadin for life. Ok fast forward to my appt with a hematologist this week. He says no its not too dangerous for me to have children, that I can do lovenox and it should be fine after all I was in the most highly suscepitable area to get a clot because i was : in postpardum, started smoking after I lost my daughter, had PSD and was not moving about alot, etc. Ok then he says since I have only had one thrombosis and it was under those conditions that I will be able to come off of Coumadin in Feb. and not need blood thinners unless I am preg, have surgery, immobile, injured, etc. and in that case it would be LMWH. He said that this is the standard protocol for PSD patients that have only had one clot. BUT he did say should i ever have another clot I would be on Coumadin for the rest of my life. DOES this sound normal? I have been told so many different things and I would just like some more info on this. This Hemo is supposed to be very well trained and educated. He stated he had other PSD patients. Thanks for any info you have.

Faith

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Everything he has said sounds okay to me. Although it isn't clear when your Protein S levels were tested... if it was a few months after any thrombosis/pregnancy and whilst not taking warfarin the result would be okay. Whether you take warfarin or not depends on perceived risk and your personal preferences.

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Ok then he says since I have only had one thrombosis and it was under those conditions that I will be able to come off of Coumadin in Feb. and not need blood thinners unless I am preg, have surgery, immobile, injured, etc. and in that case it would be LMWH. He said that this is the standard protocol for PSD patients that have only had one clot. BUT he did say should i ever have another clot I would be on Coumadin for the rest of my life. DOES this sound normal?

This is exactly the advice I was given and where I am at the moment. One DVT (not pregnancy related) 1 year of warfarin, LMWH with this pregnancy and 6 weeks post partum, now no treatment unless I have another DVT or in the situations you describe.

Post partum Protein S levels can be unreliable; being retested when you stop the coumadin might be a good idea.

If you read the pregnancy forum here you will see that there are many of us who have had successful pregnancies on LMWH even after loss.

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Same for me. I had a DVT in 2001 (pill related) and then took warfarin for about a year after. Now the advice from my haematologist is no medication unless pregnant, long haul flying, surgery etc.

She said that it was up to me, if I was worried then I could take anticoagulants but I chose not to.

If I develop another clot then they would put me on anticoagulants for life.

It is quite worrying when you get lots of conflicting information, you could always ask to see a different doctor for a second opinion if you're really worried/confused

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faith23,

As you can see there are many of us who have gone through simular situations and have been told the same things about what is standard protocall. I had a dvt in 2004, on thinners for 6 months, pregnant one month later and on lmwh and heprin for my pregnancy. Now I am on nothing and I am completley healthy as well is my little baby girl Gwen. :)

I think your hemo has it all togrther! :)

Julie.

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Guest faith23

Thanks so muh everyone for your great advice and experiences. My PSD levels were taken 2 days following delivery, but before DVT and Coumadin. I think i am going to have a retest done in Feb. just to find out the levels. My mom just rec. her results and she was 23. So who knows. Thanks again for the helpful comments

GREAT HEALTH TO ALL

Faith

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  • 4 weeks later...

Hi all,

Haven't been here for awhile, but some recent developments have brought me back. I developed my second DVT (this time ankle to groin) October 7, six weeks after having laser ablation of my left greater saphenous vein. My doctor, knowing about my PSD and patent foramen ovale (hole in heart), insisted that I be on Lovenox for three weeks post surgery. It wasn't long enough.

During my overnight stay at the hospital, the doctors discussed inserting a vena cava filter, but then decided I didn't need it and sent me home on Lovenox and warfarin. I'm now stable on warfarin.

I was diagnosed with PSD and PFO 12 years after my first DVT (pregnancy related). The interventional radiologist who did my vein procedure sent me out for testing before he would agree to do the procedure. Since I had had no other DVTs, my hematologist advised that I could just do prophylactic Lovenox post surgery or injury.

The vascular specialist in the hospital said that I will have to be on warfarin for life. However, the hospitalist and my interventional radiologist said that this was not an unprovoked DVT (surgery related) and maybe after 9 - 12 months I may be able to go off the warfarin. I haven't heard from the hematologist at all. I don't know if I'm willing to risk another DVT.

I'm just amazed I'm still getting differing opinions.

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