DVT deep vein thrombosis forum

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recovering from dvt
Started by chris
Posted: October 17, 2009 at 10:43
Hi,
I was a healthy fit 35 yr old in england running half marathons and developed an extensive dvt in my left leg. Despite test after test after test no one knows why it happened. I did my 6 months on warfarin and am now a year on and recovering well. I wear a knee high white stocking from medi uk which does not bother me at all and am running again now and back to normal life. I guess the reason i write this is to encourage people to stay positive, i got very down for a few months and thought the world was ending. There is no doubt that since i changed my outlook on it all i seem to have recovered quicker. good luck everyone, hope all recover well
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Re: recovering from dvt
Reply #1 by speedyturtle
Posted: October 17, 2009 at 11:33
Chris, thanks for the positive words. It can be a little daunting for someone newly diagnosed to read this forum.

Did you have any PE with your DVT?
Have you had any screening for predispositions since coming off warfarin?

Cheers,

Sally
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Re: recovering from dvt
Reply #2 by chris
Posted: October 17, 2009 at 20:36
sally,
Yes I was the same, read this forum and felt worse to be honest. No I had no PE thankfully and have been screened for all predisposition with negative results all round..in some ways that pleased me but I still have no explanation as to why it happened, just have to get on with life now and not worry about the possibility of another,had to endure many jokes about me wearing tights in the summer!!!
Regards,
Chris
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Re: recovering from dvt
Reply #3 by Nicola Waite
Posted: October 17, 2009 at 20:53
Hi, I read your stuff with interest, 15 years ago, i developed a blood clot post op knee op, and continued to get blood clots during periods of anticoagulation, my haematology department have done everything they can = then we found out i had factor v leiden deficiency which meant i had to have lifelong warfarin, which didn't agree with my plans to have a baby so i have had a few more clots during medication and yesterday i had an ivc fitted through my neck and fed down into my groin, to stop anymore clots goign to my lungs... very interesting stuff, but i am quite knowledgeable when it comes to warfarin, clexane, dindevan, heparin, you name it, if its anticoag, i have taken it.
Glad you are ok, its so depressing, especially when you are quite young and i hate those tights too!
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Re: recovering from dvt
Reply #4 by Nicola Waite
Posted: October 17, 2009 at 20:54
Hi, I read your stuff with interest, 15 years ago, i developed a blood clot post op knee op, and continued to get blood clots during periods of anticoagulation, my haematology department have done everything they can = then we found out i had factor v leiden deficiency which meant i had to have lifelong warfarin, which didn't agree with my plans to have a baby so i have had a few more clots during medication and yesterday i had an ivc fitted through my neck and fed down into my groin, to stop anymore clots goign to my lungs... very interesting stuff, but i am quite knowledgeable when it comes to warfarin, clexane, dindevan, heparin, you name it, if its anticoag, i have taken it.
Glad you are ok, its so depressing, especially when you are quite young and i hate those tights too!
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Re: recovering from dvt
Reply #5 by H
Posted: October 19, 2009 at 09:53
Hi chris and thanks for your post. It's reassuring to hear that normal life does
resume - at the moment I'm desperate to get back to ordinary life (work, gym,
social life....) but only 4wks down the line I'm being told repeatedly to take it
easy by my GP and friends and family. Although I generally feel fine i've not
been allowed back to work yet but am hoping to return in a week's time
assuming my employers occupational health nurse gives me the go ahead. Like
you i don't really know what caused my dvt (which was unusually in my groin)
which makes me generally anxious - I'm only 25, a non smoker with no family
history, although I was on the contraceptive pill which possibly increased my
risk. I think I'm probably driving my partner mad with my constant flitting
between being anxious and miserable and being desperate to resume 'normal
service'. It's good to hear that these feelings are a: normal and b: won't last for
ever - how long was it before you started exercising again? I'm thinking about
going swimming or walking on a treadmill as I'm pretty mobile now though can't
walk for more than about 15mins without feeling achy.
Although I've still got 5mths to go i'm anxious about coming off warfarin and the
possibility of developing another clot - did you feel this way at all and if so how
did you reassure yourself?
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Re: recovering from dvt
Reply #6 by kb
Posted: October 19, 2009 at 16:00
H, yes it is a trying time when you first find out...it is hard to accept that one minute you are extremely healthy and active, then the next minute you are in the hospital and learn you were ticking time bomb that could of went off any second. So part of you feels lucky and the other part feels very vunerable. Like Chris, I feel I have completely healed and gotten my life back to normal. I had a DVT and subsequent bi-lateral PE's. I am almost coming to my 1 year anniversary since my world was rocked. I am about 3 months now since I have been off warfarin treatment. I did get rescanned and all is clear. My DVT cause is likely long haul air travel and a injured knee. It took me about 5 weeks into my treatment before I started exercising again. Everyone is different...don't push it and stay positive. I can't tell you how much a positive outlook helps. Good luck! kb
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Re: recovering from dvt
Reply #7 by Speedyturtle
Posted: October 20, 2009
I really agree with kb, it's so important to maintain the positive outlook, which I know is really hard when horrible things are happening to you.

After having a good wallow in self pity for couple of days, I decided to really turn it into a real project. I briefed a good rehab personal trainer on my condition (and he's done lots of research on it subsequently) so I could start an exercise program straight away doing whatever I could still do - and was allowed to do.

And scheduled an appointment with an Dietician so I don't really chub out during this period while I'm less active (which I am SO prone to doing if I don't work out). I'm using the spare time I have now (since I can't work out like I used to) to spend more time with family and friends, and get back into hobbies that went on the back burner when I was in training.

It's kind of weird but I said to my partner this morning "I actually feel like I have a more balanced life now."

I'm off the clexane and just on warfarin, and my DVT seems to be responding really well. I'm still doing at least one exercise session a day but I think that's helping my recovery.

When I was first diagnosed, I could not stand at all, the pain in my leg was a killer. As soon as my docter felt the clot was stable (about 5 or 6 days after diagnosis), I started doing gentle exercise to get the blood flowing and the pain is 95% gone now. The doc thinks in another month I'll be back to training at my previous level and the only difference to my lifestyle will be taking my warfarin once a day. (and staying off mountain bikes for a while....)

Yes, I wear the stockings religiously! I'm determined to try and avoid PTS or a recurrence if it's at all possible.

So keep the chin up, there is life after DVT. It's really important to try and avoid the spiral into depression, anxiety, weight gain, feeling bad about yourself - that doesn't lead anywhere but down.
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Re: recovering from dvt
Reply #8 by Ksut
Posted: December 15, 2010 at 19:58
it is a really trying time when you come off the warfarin. I found myself finding reasons to worry and not get back to normal life. It took putting two stone on after coming off the warfarin to realise that the problem was in my head not my body, especially after having another scare and spending the weekend back in hospital just to be told it was just a muscle strain in my leg. I eventually realised that i had to stop worrying that i may develop another clot, as i also had no apparent reason for developing it in the first place. It was a vicious circle of not exercising in case i developed another but by doing the exercise it reduced the risk. All i can say is don't put yourself under pressure, listen to your body and remember to enjoy life, no matter what, cos you only live once!!!!
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