Hello Willie,My Doctor (who luckily is also a Hematologist) described it to me as just being extra sure that no other clots form. That being said I have heard of many cases that if the cause is determined many people can get off the thinners in 3 to 6 months. They have not found my cause so unfortunetly I may be on longer (there goes my Hockey and Snowboarding). It took me about 5 to 6 weeks to get balanced on the Warfarin and now take alternating doses of 5 and 6 mg once a day. I have no experience with the clinics but would strongly recommend seeing a Hematologist if possible. Good luck and I hope they get it all straightened out for you soon.

Hey Yote welcome, Ya know none of us want to be on Warfarin/Coumadin but trust me it's worth the risk if it means not going through the clotting process again. I too felt exactly as you did the first time I had a clotting episode, Unfortunately they never figured out where my clots come from so after just a short time on Coumadin I stopped taking it. (I think somewhere in the back of my mind I thought I was still immortal) To make a long story short I had a repeat episode and ended up back in the hospital with PE's in both lungs again. So even though we hate being on the rat poison its the best alternative we have going for us right now. I know it's difficult for you especially since you are Wiley Coyote and as we all know the Yote has no patience. But be patient my friend, Your INR being only 1.8 is a very good reason for them to up your Warfarin dose to 7.5 to get you therapeutic. Myself i take 7.5 -5 days a week and 10 mg 2 days a week to maintain my INR of 2.5-3.5 (Somewhere along the way it was determined I clot when I get below 2.5) Like I mentioned earlier be patient, give you body a chance to heal especially the lungs and go the 6 months to a year on the Coumadin. It could mean the difference between life and death. Things eventually do get better, and life does return to normal even if you are on Coumadin. I still do everything I have always done before Coumadin, Just not I take a few more precautions.
best of luck to you and get well
hugs
ferr

Welcome (unfortunately). Your story sounds like mine, several weeks of misdiagnoses and tests, until pain brought me to the ER where the found clots. I understand the wanting to get off of coumadin. it's scary at first. But 6 months of it is not a big deal at all. Unfortunately for me I clotted again so I am a lifer. Given death as an alternative, I guess I am OK with that :)

I also had the pulmonary infarction and lung damage, although I was advised that it would heal.

As with Ferr, I do (most) everything I did pre-coumadin. The only thing I don't do is ride my bike on certain sections of a local road that I don't think is very safe. And I haven't been back snowboarding yet, but I intend to. But other than that life is pretty darn "normal"

I used to go to a clinic, once a month once I was stable. Now I test at home, email my results, and go in once every three months to calibrate the machine (same one they use).

Good luck to you

Chris

My ER doc was very up-front in what was, to me, the first professional explanation of PE. It included "when you hear of someone recovering from surgery or trauma, doing fine, and suddenly dying a few weeks out, that's what it is". Like many of us you dodged a bullet.

If your medical advisors are finding remarkable progress in a short time then that is a blessing. Still, there could be yet uncovered reasons why you threw clots while many other survivors of trauma do not. At some time that may be settled with the help of a hematologist. Meanwhile, with the methods available today, it is easier than ever to monitor the effects of Warfarin to minimize its risks while gaining its benefits. One of those benefits is to give your system ample time to dissolve or seal all clots to the greatest extent possible before leaving it to its own mechanisms.

Like many people here I was under the care of an AC clinic once I became therapeutic. They specialized in Warfarin management (they were often called "Coumadin clinics" but that ran afoul of trademark violation). Until very recently those were the places most people went if they were on the drug. Some continued the therapy, and the visits, for decades. Such clinics are equipped to turn around PT/INR results in the same visit, whereas doctors often must send to a lab and await results. That quick-turnaround was a big deal before the self-test meters that have come around in recent years. You or the insurance pay a premium for what they do, typically $140 or so per visit, but even in this age the clinics are recommended while the patient stabilizes on the drug. Some elderly patients who were on dozens of other meds needed to be closely monitored for interactions. With each test they would determine your dose until the next visit. Since they handled the details of such care, health system physicians were not saddled with the task.

They typically show a video on the basics of handling the drug, but if you've done your Internet-based research then much of what is in the film you may have seen already. Two lasting things I got out of the 15 months of visits were 1) the habit of using one of those daily pill-minder trays; and 2) a list of approved OTC cold meds.

As a long-termer I have since moved on to using a home meter and I fax INR results to a physician once a month.

Hi,

Well, it's a good story! And one we all can kind of related too. The details may be different, but the aftermath is familiar. You're kind of shell shocked. Hard to believe all this went down, when you reflect on it.

Who you see for your warfarin management is a matter of preference.My Internist manages my warfarin and he's done an excellent job. I get my results either the same day, or the next morning. Finding a good doc is important. I changed docs after my clot, because I didn't feel confident in how she was managing my INR. I did investigate going to a warfarin clinic, but those people, I'm afraid, freaked me out. I met with them to ask them how it would work and they were very regimented with what I should eat and shouldn't eat, and it seemed like I'd never be able to eat a green salad again (which is NOT true), so I passed on that. But I know people here who have really positive experiences with warfarin clinics as well. You should really talk to your doc about your concerns, what is his approach to warfarin management, how is office will communicate test results to you, etc. Getting info up front saves frustration later.

I'm a warfarin lifer, and similar to Ferr and Cjmenjou, I haven't really had to change my life all that much. I ride my bike, play sports etc. For you, your life is still yours. It's just this thing you gotta do now for a while. I swear the emotional side of recovery is so much harder than the physical side sometimes.

Glad you made it!

Welcome on board! Glad you are here to join us!

Your story sounds like a lot of ours. My PEs were diagnosed a lot faster than yours (about 48 hours), but I was still sent home (after being told my asthma was uncontrolled) by the first doc I saw. Was in the ER less than 24 hours later.

Have they done an ultrasound of your legs? Just because the clots in your lungs are gone (and they may not be gone completely), doesn't mean that you are clot free. If you still have DVTs in your legs, they are at risk of growing and breaking off. and becoming more PEs. Staying on the warfarin for six months means that your body will either dissolve ALL existing clots (including those in your legs and lungs) or will relegate them harmless by making them part of the vein walls.

Going off warfarin early can means you can reclot, especially if all existing clots have not been fully dealt with. My PEs came less than four months after coming off warfarin for the second time after a DVT. I'm a lifer now and much happier to be on the "rat poison" than off. Don't want to risk more clots; don't want to risk dying.

Although the big clots in your lungs have disappeared, you may still have "webbing," which is clot remnants clinging to the vein walls and invisitble on a CT. You might also have damage to your lungs from the oxygen deprivation. Staying on the warfarin gives your body a chance to heal without also having to fight clots at the same time. It just makes the recovery process easier.

I would give the internist a chance, but if you continue to not trust his advice, then find a doc you do like. My primary has been exceptional at managing my INR and I trust her with this. However, second-guessing your doc all the time will make recovery harder.

Best wishes! Keep us posted!

Thank you all for your support and points of view, I appreciate learning that I'm not the first to go through this and that you are all doing OK.

The internist I'm seeing got me to 2.2 by upping my warfarin to 7.5 for 4 days and 5.0 the fifth day.

I'm wondering about two things now.

First, what is the source of all these PEs. The first theory by the ER doc was that they were caused by the leg injury from the car impact. An ultrasound was done on both legs looking for more, but none were found.
My present internist dismissed the leg theory, and concluded that they arose from inactivity during the first week after being run over. I live in a two story house and was not that inactive, going up and down the stairs several times a day, and so I don't agree with this theory.
I feel the clots were produced by the impact to my chest by the vehicle that ran me over, but that's only my lay opinion, which I would like to hear over ideas about.

I agree with going along with the warfarin if it will prevent further clots, but I wonder if I am in any danger of making more clots, since the trauma was a one time occurrence.
I am concerned that the downside of the warfarin is not warranted if I am unlikely to produce more clots.

The other thing I'm wondering about is minimizing side effects. I have been in a constant state of fever and night sweats since starting the warfarin. Is this common? It seems it is hard on my liver, and I'm suffering from constipation since starting the warfarin as well, which may be the result of an overtaxed liver. I haven't seen much discussion on side effects, is anyone else experiencing any?

Thanks again for your support and comments, I think it's great to be able to communicate with others who are in a similar situation.

Peace,
WFC

Hi, my GI doc said there are much harder drugs on your liver than warfarin, and he's not concerned. At the end of the day, drugs are processed through your liver, some a harder on the liver than others. Constipation and GI upset are a possible side effect of warfarin. But that also can be compounded by lack of activity, not drinking enough water, etc. I don't consider fever and nightsweats a common side effect. You should mention that to your doctor.

Personally, I had very few side effects from warfarin, and in hind sight what I thought were side effects were probably instead from the clots, the trauma, the recovery, etc.

Night sweats or hot flashes are something that is very common for me. I take my Coumadin at night and Usually about 1/2 -1 hour after taking my Coumadin and I head off to bed, I wake up drenched or wanting to turn the air conditioner on even in the winter. As far as why you clotted, its anyones guess. I was 51 when I had my first clotting episode, (I am a 4 time PE survivor) I was and still am a very active person, and do a lot in the outdoors year round, from rifle and archery hunting, Search and Rescue as a dog handler, hiking, camping, ATV's, snowmobiles, horseback riding, and just being outside doing anything. So using a inactivity excuse for me clotting wasn't even considered. I had no injuries, and about the only thing that I had against me was I smoked 1/2 pack of cigarettes a day (except during hunting season when I smoked none at all). I have been tested for everything under the sun they can possibly test for and still no answers as to why I clot. Ya just never know. I often questioned why I never clotted before, My MD told me I may have, they may just not have been serious enough to have affected me the way the ones in 2005 did, plus now I'm older and don't bounce back the way I did when I was younger and Immortal. You may never find the answers your looking for. You need to concentrate on taking it one day at a time and unfortunately you may have to accept the fact you will never have the answers you want. Hope all is well with you now
Hugs
ferr

Wish there was a simple answer but going of the Coumadin sounds quite risky to me. My PE was caused by multiple fractures and surgery in my ankle. I am hoping to be able to come off the coumadin in 6 mos (already on it one mo.) and it is scary to think how careful you have to be. But clotting again would be much worse.

My GP monitors my INR and I trust him completely (which is not always easy with drs.). So I agree, find someone or somewhere you feel confident with.
Good luck!

I am 10 months post clot. I was taking 12.5 mg daily of coumadin. I went off in January and as of 2 weeks ago, I consider myself back at 100% full strength. I was a long recovery road. Three weeks ago I was feeling really ill. Then a few days later, I wake up well. There is a light at the end of the tunnel, but everyone's tunnel is a different length. I suggest you find a doctor you like and trust and take his advice. Good luck to you.