A week in to the DVT/Coumadin ordeal and have questions

sparklehead · 06-18-2008, 11:00 PM

So a week ago I went to see my doctor because of pain in my calf and was diagnosed with DVT (they did a dopplar ultrasound) in three veins of my calf. Each clot completely blocks the vein and I'm only in pain when I stand up and can feel the blood pooling. I was put on Lovenox twice a day for five days and now I am on Coumadin, most likely for the next six months. Not all of my bloodwork is back but so far it looks like I do not have a clotting disorder. I switched from low-ogestrel to Yaz in January, and I'm pretty sure Yaz is the culprit. I am 27, don't smoke, but I am overweight. Now that I'm just on Coumadin, I have some questions I'm hoping others who have been through this can answer:

1. On monday my INR was 2.43 (perfect) but today, wednesday, it shot up to 3.97. I was spaced out and tired today, and had to leave work because I just couldn't be sure I wasn't too spaced out. Has anyone else noticed this with a high INR?
2. I haven't really gotten a straight answer on how high risk I am for a PE at this point. I know it doesn't really matter because I'm on the treatment necessary, but I'm still anxious and don't know if it's justified. I know that Coumadin won't dissolve the clot, and my doctor mentioned that even if I throw clots at this point it's not as dangerous. Is this true? When can I relax about this? Right now I don't want to be alone in the house and always have my cell phone open with speed dial ready.
3. Did anyone else expirience headaches, body aches, diarhea with Coumadin? I am told I will adjust and this will go away, but how long can that take? It makes work difficult.
4. The pain in my leg is slightly less than it was, but I still can't stand up for more than a minute at a time or else it becomes very painful. This is because the veins are totally blocked. How long until I can expect this pain and inconvenience to get better? And I know the question of how long it takes clots to dissolve depends on size etc. but how long did it take you? How big was your clot?

Thanks in advance for the help! It's been pretty stressful, but I think knowing what to expect will help.

scarlet55 · 06-21-2008, 03:51 PM

Hello-
I have a 35+ year history of DVT, and PE. There isn't anthing I haven't heard, along my long journey.
I don't mean to frighten you, but clot in calf veins are the ones that go to the lungs more than any other vein in the leg. Your doctor is wrong telling you that it is not dangerous. Get another opinion. Each one is different, and I learned this a long the way. Some are good, others could kill you!
My journey began from taking birth control pills, and the estrogen caused my problems.
Even after stopping them (only on them 6 mos.) my life changed.
If you are taking anything with estrogen it it for birth control-stop.
It will only make your clotting problems worse. It may have been what started your problems in the first place.
I had a problem with the Coumadin, also. Might be a good idea to talk with your doctor about the reaction you are having as this is not right. He may want to change your meds. Also, you need to stay on top of your clotting time-INR, as this means meds need to be adjusted.

earlysunrise · 06-24-2008, 02:36 PM

Hi! I was diagnosised in Oct 2007 with blot clots in the left pelvic and entire left leg. I am still on Coumadin and I have my INR tested weekly. Sometimes my INR goes up to over 4 and other times it has dropped to below 2. It varies and they adjust my medicine each time although I am eating the same almost every week.

Also the biggest side effect with Coumadin for me is the tiredness and lack of focus. I sometimes sleep on the weekends about 12 hours or more as I am exhausted. I don't have energy to exercise either and shortness of breath. I can not wait to get off the medicine.

As far as the clots to dissolve it depends on each individual and how bad it was also. Last tested I have about 80% recovery in the leg and 55-60% recovery in the pelvic. I was diagnosised with May-Thurner Syndrome and my clots started in the pelvic and moved down. Most DVT's start in the calf and move up.

Just one day at a time and it will get better but it will be something to always be aware of for the rest of your life. I wish you the best and speedy recovery.
Julie

JamieeR · 06-30-2008, 11:08 PM

Hello!
First, don't think you are crazy! I have been on coumadin for the last 11 years and have only been diagnosed with cardiolipid blood disorder for the last 2 and a half. The fact of the matter is that there are about 14-20 blood disorders and only a few that have tests and names to go with each. My situation began similar to yours. I was on the pill from 16 to 21 then developed what I thought was a sprain. After walking around on it and nursing it for a month, I finally went to my college's health center only to be rushed to the local hospital. I began working at a major ivy league university and seeing doctors upon doctors and really received excellent care, but no one could tell me what the actual problem was. I changed doctors about three years ago and my new GP sent me to a fantastic hem. In all honesty, I travel oftenm stretch my legs on long trips (plan, train, and car) and am kind to my system by wearing the prescribed knee highs when I can. I only got those in the last few weeks as I developed a clot in a superficial vein (unrelated to my condition-- I am a teacher and anyone on their feet often can develop the sup. clot). I cannot believe that I was never prescribed these before now. I don't wear them know (summer) but will put them on when I get home or even overnight sometimes. If you are hiking and flying, this may help you.

Larger clots never disolve totally-- just hollow out. There is a flap in your vein that allows your blood to keep moving. With a clot, the falp is destroyed which is why the leg swells. As far as the coumadin-- your INR/ PT can be wacky at first and even if it is therap mode, it can get wacky again. For as long as I have been on it, the change of seasons (and of course what I eat) effect it. I also noticed that if I stay at a certain weight for my height, that my INR stays more consistent. Remember, you are not too far into the treatment so your body is healing. It is working harder than usual-- this could be why you are so tired. Although, I do notice that I feel more tired and unfocused when my blood is out of whack. Also-- make sure you get the pressure knee highs/ pantyhose. I was never told about these originally and have only gotten them within the last month (because of the superficial clot) and it is like night and day. They are $32 a pair so you will need to take good care of the garments. It will get better-- I promise. Watch what you eat and Listen to your body! Good luck!