DVT/PE & Blood Clotting Disorder Support & Information

Pulmonary Embolisms, Deep Vein Thrombosis, and Clotting Disorders - oh my!

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steph1278 wrote in thrombi_support
good evening everyone,

I'm Stephanie 24, from West Virginia. I am a mother of one beautiful son. I have a question and I am not getting a straight answer from anyone.

In June I went to the doctor, with pain in my calf. It turned out I had a clot behind me knee. I was kept in the hospital for a week and put on coumadin. About two weeks later I begain having pain my my upper thigh. I went back to my family doctor and she sent me for a ultrasound of my leg, and it showed that my clot had extended up to my groin area. I guess this seemed to panic everyone including myself and I was placed back in the hospital. I saw a bloot clot from our local cancer center this time and he wanted a catscan done. He was looking for hidden cancer in my liver and kidneys that could cause this. But instead of finding cancer, it showed I had a PE in my lung. They ended up putting a fliter in my arota to my lungs, so I wouldn't throw another clot. I stayed in the hospital a few more days and went home on lovenox shots this time. I was reffered to UVA hospital and saw a specialist. I have been test for every clotting disored know and they have all came back negative. In the last month they have been trying to wean me off the lovenox and try and put me back on coumadin. They want my coumadin levels to ideally between 2.5-3.5. I have been getting my IRN checked weekly and I seem to be stuck at 2. I can't go off the lovenox until it gets to 2.5 at least. The whole issue with the coumadin orginally was they wern't sure if I was resistant or not.

After all the rambling...
I am wanting to know of any of you have trouble getting you INR high enough and if so are you resistant?

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Yeah, I had a hard time keeping my INR high enough when I was on Coumadin. My brother is a pharmacist and he said that the levels I ended up being on where about right for a 300 lb man (and I'm a slightly smaller than average woman). After I went off Coumadin, I heard a report about a genetic study that showed that genetic markers were a better indicator of required Coumadin dosage than weight/sex/etc. So I think it might just be genetic and it might just take a while to get up that high because most doctors are cautious about upping dosages because of the possible complications of it getting too high.

I also was tested for all the genetic issues and protein factors and came back negative for all of them. My PE was attributed to hormones. I don't know how soon after you had your son that your clots were discovered, but the post-partum period is a known risk factor for clots.

Good luck. I hope they can get your levels worked out. if you don't mind my asking, what dosages do they have you on?

My son is 20 months, so when I had my clot he was 15 months. I am a little on the heavy side so I may ask my doctor if they need to be upped. I am taking 9.5 mg nightly.

Ah, okay. I know the first 6 weeks are considered a clot prone time, but not much after that, I guess.

It took 10mg a day to keep my INR just above 2.5.

My levels are up and down all the time.
Last week (Might have been two weeks I can't remember) I was 4.5 which was too high, and then this week was 1.6

So for a while I was going once a week getting it checked. Right now I don't have to go back till 10 days. Its annoying, and sadly life long for me.

I also have a filter in me. I think they put it in my stomach/groin area.

They actually looked into trying to take my filter out when I went to UVA, becasue they are new studies coming out that show they cause more problems then they help. They told me no matter what for the rest of my life becasue I have that filter I have to be on some sort of blood thinner. I think they said that if I am not the filter may clot off.

I wonder if thats for all filters or ones in certain areas. They weren't going to give me a permanent one, just have it in for the surgery I was getting, but then they figured that I may want to have children so its best to leave it in.

All I know is, I'd rather be going to get my blood taken then end up with another clot (I've had two.)

The only reason they gave me one was bacasue I threw the clot to my lung. They waited as long as they could before they gave it to me. I do not know if it is for all filters. I know that the woman that told me this is one of the top specialists in the nation, so I figured she knew what she was talking about. You may want to ask you doctor to find out.

My filter went in through my groin area and is located around my bellybutton. Sounds like yours. It is in the arota leading to my lungs.

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