Share your DVT experiences.

In My Humble Opinion
1

(I’m not asking for medical advice, I’m actively seeing a Dr. about this, I just want your experiences.)

I have been having some leg problems recently, and it turned out to be blood clots in my legs - a DVT. This started on Tuesday, where my doctor managed to scare the crap out of me with all of the “This can be fatal, you know.” I went in to work briefly the next day and it seems like everyone had a story of “Oh yeah, my mom/relative had that - it went to her brain/lungs and she died.” This is less than comforting. I am an active 26-year-old, so this whole thing has been a shock.

I am interested in how long it took for your swelling to go down - my calves and (what used to be my) ankles are huge and I can no longer wear my regular shoes nor walk with any semblance of normalcy. I’ve read that sometimes this never goes away. My doctor said it just depends on the person. This alone makes me want to cry. Did your swelling subside in time?

Have you ever had a DVT? Tell me your survival stories. Were you able to walk and be as active as before? My hobbies involve hiking, trapeze, running, and general wilderness exploring. I’m not sure what I’m going to do if I can’t do these things anymore. Also, if there’s anything else you think I need to know or ask my Dr. about, that would be appreciated. Thanks!

2

A friend’s wife had this, and it took a few months for her leg to go back to normal - but it did eventually go back to normal. Have hope, but be patient - and do what the doc tells you.

3

My husband wound up in the hospital for a week last October when the clot in his leg broke free and landed in his lungs. He’s only 34, so this scared the crap out of us as well.

The swelling takes a while… Ask your Dr. about getting a compression stocking. And wear it. To work, to bed, when exercizing. This will help, but you may always have trouble with that leg.

He is as active as he always was, within a couple of weeks he was back in action. Hunting, bowling, dancing, running as part of his workout. But just Wednesday night, he came out after being in bed for 10 or 15 minutes and fished a compression stocking out of the sock basket. His leg was bothering him, and the stocking helps.

He’s also on coumadin now, and likely will be for the rest of his life.

Good luck!

4

Also, my husband tested positive for the Factor V Leiden gene. Something else to ask your Dr…

This is what prompted the coumadin-for-life prescription. Being genetically predisposed to clots, his doctors are playing it safe, because at this point it’s not if, but when.

5

Thanks, I’m glad to hear some positive stories!

I’m glad your husband was okay, SylverOne. This really is scary! I’m really glad to hear that he continued being so active. I just got done talking to my Doctor and he says the thinners are working, and I should be okay within a couple of weeks with easing into exercising. I will ask about the stocking next time I talk to him. Also, thanks for the heads up about the gene testing. I hope your husband continues to be okay!

I still do not completely understand how thinners reduce the risk of existing clots, but I trust they know what they’re doing.

6

Just over a year ago, I had a pulmonary embolism (blood clot in the lung) that might have started as a DVT (no clots in my legs when they dopplerized them, though). I’m another one of those “How the hell did this happen?!” folks–at the time I was 25, in reasonable shape (not hugely active but nowhere near overweight), and had no major risk factors. So, yes, if a clot breaks off and goes traveling, Bad Things Can Happen ™. I was very, very lucky in that my PE was a mild one.

I can’t speak to DVT-specific things, but as of right now, my life is pretty much like it was before the clot. I was on anticoagulants for about six months, but I was able to go off them earlier this year–anything I’m still taking is OTC, like low-dose aspirin. The only major change is I’m never allowed to be on normal hormonal birth control again, and if I ever decide to get pregnant I may have to take LMWH for the duration of the pregnancy.

If you end up taking Coumadin (warfarin) for a while, be sure to discuss diet with your hematologist. The big concern there is vitamin K–it basically counteracts what the warfarin does. Some doctors will ask you to cut it out of your diet, but mine just had me keep my intake consistent from week to week, so he could balance my dosage around it.

I’m guessing a lot of what happens going forward is going to depend on what caused the DVTs, though. Best of luck!

7

My understanding is that blood thinners allow blood to move more freely around the blood clot which I surmise keeps the pressure from building up behind it to the point that it goes on the move.

As for personal experience, I had a blood clot caused by a PICC line that broke off and wound up in my jugular, of all places (luckily - could have been a lot worse, I know). I wasn’t told anything about swelling and didn’t really experience any as far as I know, so I’m afraid I don’t have any information on that, but it’s never been a problem for me for what little that’s worth. Six months on Coumadin which I got through fine and haven’t had any problems since.

I wish you the best!

8

I just spent about a week in the hospital two months ago due to deep vein thrombosis and pulmonary embolisms - multiple clots had migrated from my leg to my lungs, causing shortness of breath, heart palpitations, and excruciating pain and an inability to move my leg fully. I couldn’t even straighten my leg completely. My thread (and don’t let it scare you, mine was fairly serious):

So, I just spent about a week in the hospital

It’s weird to reread that thread now, I was still rather spooked. At two months out on the blood thinners, I’ve improved a lot - in fact, everything’s really been a lot better than I thought it would be. The heart palpitations are gone, my leg doesn’t hurt at all, and the shortness of breath is much better. The swelling is still there somewhat, but it has improved a lot, sometimes down to completely normal. I’ve been gradually getting back to being active.

So, my DVT and PE were pretty serious and I’ve started to get back to a surprisingly normal life. Be concerned for your health, but don’t let yourself get consumed by worry. :slight_smile:

Oh, and about the compression sock - talk to a doctor first! I used one before I went to the hospital thinking I just had a circulation problem and probably just broke a lot of clots loose and sent them flying up my leg. :smack:

9

Correction: closer to three months, actually.

10

‘Blood thinner’ is a widespread, but inaccurate, term. Coumadin has no effect on the thickness (viscousity) of your blood. Normally, turbulence in the blood flow, like you would find in a torn vessel, triggers the clotting cascade. If you have a boulder in the stream, like, say a DVT, that can provide enough turbulence cause the reaction and the boulder will get bigger like a snowball rolling down hill. By impairing your clotting ability just enough (the sweet spot with coumadin is narrow, hence all the blood tests), you can prevent this from escalating. They give aspirin to heart attack patients for the same reason.

Being dehydrated can thicken the blood and help start the problem when combinded with the inactivity of a long plane flight.

Did you say you had them in both legs? That’s somewhat unusual, as is your age, so make sure your doctor is working you up for being a high risk person, good luck

11

So all blood thinners do is keep the clot from getting bigger? How does that prevent it from migrating and possibly killing you? Or doesn’t it? (Man I’m glad I’m only reading this now, almost two years after my clot incident. And I’m sorry to be asking these questions, Time Stranger, I imagine it’s rather unsettling.)

And I swear I got that blood-thinners-make-it-easier-for-blood-to-travel-around-clots thing from a medical professional, which is a little scary.

12

I had a DVT after I had unexpected surgery for a shattered leg, while on birth control pills…they tell you to go off BCPs if you are going to immobile for an extended period, but well, I didn’t get to plan the leg-breaking in advance.

I was on coumadin for a few months IIRC, and my dosage fluctuated wildly depending on how active I was, my diet, etc. It was very counterintuitive to have my doctor tell me NOT to eat any leafy green vegetables!

I didn’t have most of the classic DVT symptoms (red/hot areas, swelling, etc.), so I can’t help you much there. The physical therapist may have saved my life; she came to evaluate me after I was released form the hospital after the leg surgery (I was in for about a week). I was just a little sore behind the knee, but didn’t think much of it, because of the surgery and because I was then hauling around an Ilizarov device on my leg. She had a bad vibe about it though, so after consulting with my ortho surgeon, back I went to the hospital for Dopplerizing. They readmitted me straight from the exam room and put me on IV coumadin for the next week. Blood tests every couple of days at first, then tapering off as the dosage stabilized. For sure, not my idea of a good time.

My gyno wouldn’t let me take oral contraceptives for a long time after that, but I finally convinced her that the whole thing was a fluke, it wasn’t that I was naturally prone to blood clots or anything. I’ve been fine ever since.

ETA: I was only 28 at the time, but my surgeon thinks the DVT was from the combo of leg surgery, BCPs, prolonged immobility, and dehydration from the long plane flight (I broke my leg 1200 miles from home) and not drinking enough liquids because I couldn’t get up to go to the bathroom. Oh, and the nausea and puking from the pain meds. Not one of the better periods of my life, let me tell you - by the time I got home, I was in a puke-covered housecoat, on a stretcher, with a cast up to my hip. Quite a sight at O’Hare Airport, I’m sure.

13

It doesn’t provent it from migrating. Did they tell you not to massage you calf when it hurts, maybe put you on bedrest for awile? That’s what stops it from migrating, well, that and crossed fingers. Your body will naturally break down any clot over time, they’re only meant to be temporary patches.

In the sense that anti-coagulated blood is less likely to stick to a clot as it goes past that’s true, and they probably kept you well hydrated to keep your blood ‘thinner.’

14

Probably heparin IV, I’ve only seen coumadin orally.

15

Well, it’s been going on 14 years - the details are a little fuzzy. Same general concept, anyway.

16

No one ever told me not to massage or to go on bedrest, but my clot was at the base of my neck and I didn’t experience any pain or swelling (just mild discomfort - if my PICC line hadn’t been leaking blood (thank God), I wouldn’t have even gone to the hospital) so that’s probably why not.

17

:smack: Yeah, I meant you shouldn’t massage your calf if your DVT is, you know, in your calf.

18

Mine DVT threw a clot, I had a PE, and I nearly died in 2006. They told my husband to prepare for the worst. My blood pressure was through the floor, TPA and surgery was discussed, it was a long, scary night. It had an unknown cause, and I was told Coumadin for life.

I took myself off it six months ago. I’m fine, I’ve never had an issue with the leg. Not keen to live my life on blood thinners, I know what a DVT feels like now.

Be careful and do what your doctor says. Worry less about your leg and more about your life.

19

That’s why anyone on warfarin should discuss their diet options with their doctor. If you do it right, you *can *eat leafy greens (i.e., things containing vitamin K)–you just have to eat them very consistently.

Like someone else said, this was almost certainly heparin, not warfarin (Coumadin). Regular heparin is given intraveinously. That’s why LMWH (low molecular weight heparin) is awesome–it can be injected subcutaneously. (I was on a LMWH called Lovenox for about two weeks following my PE, and while it sucked to have to stick myself twice a day, it was preferable to spending those two weeks in the hospital, which would have been the alternative.)

20

Agree with this, I had a schedule - otherwise my INR numbers were just wonky as hell. (Although to be fair mine never did stabilise properly.)

Always ask your doctor, though.