DVT deep vein thrombosis forum

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Exercise after massive DVT?
Started by Jennifer K.
Posted: July 3, 2006 at 01:13
I was 35, fit, healthy, never took birth control pills, no serious injuries... and then out of nowhere I had a massive dvt in January 2005 and nearly died. My left leg and left side of abdomen and groin were affected and I am still using a walker (frame) to get around. I'm on Coumadin daily, and also am eating some spinach every day (for me, the vitamin k helps my inr levels to stabilize).
I have gained approx. 100 lbs and am by far the largest I have ever been. My doctors tell me in the same breath that I must lose weight, but to not do anything to elevate my blood pressure (which is low) or my heart rate!
There's a serious risk with having lyposuction, etc, so other than that, how am I supposed to lose weight?! I DO watch what I eat, am careful about what I eat and how much and am eating far less than what I ate when healthy and fit (pre-dvt), but I'm huge. My pharmacist pointed out side effects to Coumadin such as weight gain, insomnia, hair loss, and I have all the side effects :(
Has anyone on here re-gained their health and fitness after a massive dvt? I've gone from running 5k+ four times a week and mountain biking and kayaking, to getting out of breath pushing a walker into my doctor's office. I'm too young to stay like this!
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Re: Exercise after massive DVT?
Reply #1 by Jennifer K.
Posted: July 3, 2006 at 01:16
Forgot to mention that any kind of activity makes my leg swell and turn red, even walking for a few minutes. I've tried to push through and continue and end up feeling like my foot is breaking, leg is hugely swollen, and feeling very dizzy and nauseated.
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Re: Exercise after massive DVT?
Reply #2 by Nigel
Posted: July 13, 2006 at 14:48
Hi Jennifer,

I wouldn't put up with what you are going through. From my research on the web I am aware that there are certain drugs that can fully dissolve clots. Hospitals are reluctant to adminster them except under emergencies because of the apparently high risk of bleeding into the brain. I would certainly speak with my specialist about this form of treatment however. To go from your exercise regime to nothing at all would be very hard to take. Best wishes from a fellow DVT sufferer.
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Re: Exercise after massive DVT?
Reply #3 by Mike
Posted: August 18, 2006 at 12:33
Hi Jennifer. I too am 35, and just had a similar dvt. (Calf to iliac crest). I was running and mountain biking much like you, when a small crash kicked off the clot. That was three months ago, and I still can't do much. It is incredibly frustrating feeling 'trapped' by my leg.
What I wanted to say was that I have met others who have recovered and gone on to run and work out again. I am a nurse, and have seen that it is possible. Nigel has a point, there are some drugs available that are effective at breaking up the clots, however they are most effective in the first 6 days of clot formation. I live in New Zealand now, and it was only an option if they felt I was going to lose my leg. Apparently, the use of those drugs can result in 6-8% chance of death, and of course many other complications from intercranial bleeding. I'm hoping to talk to more specialists in the upcoming months.... we'll see.
I will try to post anything I find back here so you can see.
good luck, keep battling
mike
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Re: Exercise after massive DVT?
Reply #4 by C
Posted: August 19, 2006 at 05:34
I'm not sure about leg blood clots, but last year I had a very unusual and massive blood clot that extended into three abdomenal veins AND had a pulmonary embolism, and my doctor told me to exercise regularly. I didn't for several months because I was scared, but I do now and all is well. I have a big mass of scar tissue from the clot that will never go away. I understand that clot busters are rarely administered (even I didn't get one, and I was on the verge of losing my intestines to my clot), and when they are, it has to be done before the clot has started to turn to scar tissue.
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Re: Exercise after massive DVT?
Reply #5 by Paul
Posted: August 20, 2006 at 10:51
My wife had a massive DVT from her groin to her knee after the birth of our 1st child. After two years of Wafarin she was almost exactly the same, her leg swelled up after minimal excercise. She was very down and her leg gave her lots of problems. She then got pregnant with our 2nd child and she took daily Heparin injections throughout the pregnancy and for about 1 year after. Now she has regained almost 90% fitness and her leg is vertually normal with no side effects. She has stopped Heparin (Health service stopped providing it as it is to expensive) but she refuses to restart Wafarin tablets. She has been drug free for over 1 year with no side effects and regularily goes to the gym for a hard work out of 45 minutes. No side effects. She recently re-started diving again with no issues.

Personally, I believe the 2nd pregnancy helped to re establish the collect blood chemistry, but also that the Heparin greatly helped. Its a much better treatment than Wafarin, but expensive.

Can you get your Doctor to treat you with Heparin instead? Or are you able to offset the cost by medicare or your own finance.
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Re: Exercise after massive DVT?
Reply #6 by mumof3
Posted: January 2, 2007 at 16:42
I have always said that warfarin made me put on weight my doctor denys this i am 5ft 8 and weigh 20 stone and it keeps going on i have had 3 dvts and am on 17 m of warfarin daily exercise is painful and i cant walk very far without pain in my leg and back
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Re: Exercise after massive DVT?
Reply #7 by CHER
Posted: January 26, 2007 at 01:54
I suffer from post thrombotic syndrome form having dvt's in both legs and pulminary emboli in my left lung. This happened all at the same time. This was caused by a broken foot and not able to get around too well. My doctor never told me I could get blood clots if I did'nt stay somewhat active he just said to rest. I was in the hospital for 1 week on oxygen 24/7, blood draws every four hours and put on warfin and treatments for my lungs. I was sent home on oxygen, and in lots of pain. I have never been so sick in my life. (it took me 4 yrs to recover) But I do suffer with post thrombotic syndrome which their is no cure. I have discovered that PTS affects the heart so I am asking my DOC. to send me to a heart specialist to see how PTS is affecting my heart. I would like to live a nice full life I'am only 53 yrs. old. I must say I would prefer to also be pain free which has not been the case for me. My legs still swell and hurt to the point of tears. I was also under an onocologist for one yr. to see if their were other reasons for having PTS. I have never given so mush blood at one time for pages of tests with no cause to be found for my PTS
Has anyone found a DOC. who can help with post thrombotic syndrome? Love to hear from you.

cher
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Re: Exercise after massive DVT?
Reply #8 by Rassega
Posted: April 25, 2007 at 06:35
I am 31yrs. I also had a massive clot from my groin to my knee during my first pregnancy. However, my Drs never put me on rest. They said to continue my normal routine and stay as active as possible. So that is what I did. I swam until I had my boy then 4 weeks after C section I started walking. Yes it hurt and Yes my leg swelled and Yes it too got red but I pushed through. When my little boy was 7mths (10mths after the onset) I went to a vascular suggen (highly reccomended!) I had a venogram and found my illiac was still 100% blocked even after warifin. He then did a venoplasty and my vein opened up and the swelling started to subside. I still have occational problems and wear compression hose everyday and compression pants while I run, but I am in great shape and am going to run my first marathon this Sat. Go Country Music! I suggest getting another Dr to view your case. I would aslo suggest compression hose every day they do help even if they are uncomfortable and ugly. There is hope. I know diet is hard with the meds, but evaluate you caloric intake and see if you are eating more because of your inactivity. You might also see a Nutrition specialist to help you get back on track while regulating you meds. Good Luck!
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Re: Exercise after massive DVT?
Reply #9 by Alice
Posted: April 25, 2007 at 09:35
Hello all, Its nice to finally find some other DVT sufferers! I had a DVT at the end of August this year, I was a very keen triathlete, trained almost every day and adored running. I can now run for 1 1/2 minute intervals with a minute rest for about 20 mins. It hurts and my leg goes quitre numb. I had 2 DVT's, one in my femoral vein and another in my iliac, running from my crutch to belly button. Walking is ok, stairs can be a little painful. I desperately miss running but feel positive. My consulatant has said that my DVT is stable so I am safe to train as hard as I can cope with. I believ that pushing myself will force my body to adapt, smaller veins to grow to take on the blood flow and aparently new veins can grow, even possible joining to the veins in my buttock. Have you looked into having a stent fitted? or a vein graft? My consultant has mentioned these as an option if I am still having problems in a year. There is also research that Support stockings prevent post thrombatic syndrome (swelling and skin problems). I would also suggest a weight training programme, this will increase your lean muscle mass and you should be able to keep your HR reasonably low whilst doing so. The medical profession aren't as superb as I thought before my DVT, do your research and puch them for referals to specialists. x
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Re: Exercise after massive DVT?
Reply #10 by Laurie
Posted: April 28, 2007 at 04:42
Hey, I'm up late googling exercise and DVT being a former competitive runner who is recovering from a recent DVT. It's great to hear all of you out there and know I'm not alone and to keep pushing through!
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Re: Exercise after massive DVT?
Reply #11 by Alternative Med post DVT?
Posted: May 5, 2007 at 18:58
Is there any one out there who like me would rather not take so much med? I am an athlete and try very hard to take care of my body. The massive DVT I got durning my pregnancy sent me for a loop. It has changed the way I do everything (I would do it a hundred times over for my little angel). However I still suffer from residual clot and some PDVT syndrom (swelling...) I am thinking of going to an alternative Dr. for accupuncture or even some type of herbal meds to reduse the effects of my DVT. I am a 1.4 yrs from my first symptom. I am in great shape, but would like to be whole again, any suggestions?
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Re: Exercise after massive DVT?
Reply #12 by Phil
Posted: May 8, 2007 at 16:58
Comforting to know we're not alone! At 38 and fit I'm most worried about not being able to work out the way I used to. (Or does it have to be that way?) Pain and swelling is gone but the fear of a PE has me idle compared to the way I used to exercise. Doctors tell you conflicting things. One says go ahead and lift weights, the other says no because it will put too much internal abdominal pressure and cause trouble. Can you trigger a PE if you do a heavy weight workout or a long run? Who knows? Cause the doctors dont! Good luck to everyone in the DVT PE boat.
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Re: Exercise after massive DVT?
Reply #13 by gm
Posted: May 12, 2007 at 19:49
I had a PE 3 months ago and drs have given conflicting info. one said my running days are over and another said the more exercise the better. I've gone for the more positive one and whilst it will be a long time before Iw am able to run, I am walking a fair bit some times up to 4 miles. Although i am breathless then. good luck with it all. Let me know if you get running.
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Re: Exercise after massive DVT?
Reply #14 by peter
Posted: May 15, 2007 at 10:47
Hi all I have a dvt in my femoral artery just above knee been on warfarin for 8 weeks now back cycling with out any problems however calf still quite swollen although goes down at night any idea how long this will last or do i just have to put up with it

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Re: Exercise after massive DVT?
Reply #15 by Donna
Posted: May 20, 2007 at 21:42
I found out i had dvt seven weeks ago and was on 8mg of warfarin.three weeks ago the swelling had moved up my leg,was told the clot had moved and treatment would be six months instead of 13weeks and now on 13mg.my inr last test was 3.40 and not back at clinic for 3weeks. I feel depressed for the first time in my life, is this normal?. Iam 44yrs old
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Re: Exercise after massive DVT?
Reply #16 by Jim d.
Posted: May 29, 2007 at 23:42
I was diagnosed with DVT one month ago. after 4 days in the hospital on an IV, I was switched to warfarin pills and sent home. The ultrascan showed 3 veins with clots from the ankle to above the knee in my right leg. It came out of nowhere as I bike, hike, ski and my job keeps me walking and doing stairs most workdays. The clots have mostly cleared up in just 4 weeks because the swelling is now minimal after mild standing and walking exercise. Seems like the swelling is a big indicator of the clot dissolving...the clots block the return of blood from the leg. As far as doctors advice, remember that a patient cured is no longer a customer!
male 59 years and active.
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Re: Exercise after massive DVT?
Reply #17 by Maria
Posted: June 9, 2007 at 22:39
I was diagnosed with DVT on 16 April via a leg ultrasound. I probably also have PE, I was suffering from shortness of breath for a few months, this was not confirmed as I am a breast cancer survivor and the docs did not want to expose me to further radiation. The problem started when my right calf seized during a holiday in Spain, the flight and train trips probably contributed but the main culprit was more than likely Tamoxifen. I'm 43 and currently on 10mg Warfarin, I still get breathless, I'd love to communicate with people in a similar position, I go to my local anticoagulation clinic and I'm the only person without white hair!
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Re: Exercise after massive DVT?
Reply #18 by Rassega
Posted: June 11, 2007 at 06:05
I just had my trimontly ultra on my DVT. I got it when I was pregnant with my son, 15 months ago. The clot started in my iliac (stomach) area and continued down to the back of my knee. 7 month after he was born I had a large part of the clot that was still 100% blocked and now with my last ultra I found the part near my stomach is still 100% blocked. My Drs. have never told me to stop exercising. I swam during my preg and now am training for my second marathon. I always wear compression hose or pants when I run and also wear compression hose every day.
From what my Drs. told me after a clot is 3-4 months old it is unlikely to break free. I continue to run and the more I do the more colaterals form in my leg. I also believe a clean healthy diet every day helps. All that to say, do what you can, but live well. We all have had scary moments and fear the worst, but we can not stop living.
If you are totally worried about PE you might look into a removable filter until you feel more comfortable with exercise. Keep working hard -- and living well.
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dvt causes
Reply #19 by Roy Barnett
Posted: June 17, 2007 at 03:55
i have dvt in my left shin and groin and also a pulmonary embolism from it. about 2 years ago i had a deep laceration, to the bone, approx 200mm long which required stitching. i noticed after that injury that my ankle was always slightly swollen after that. Could that have slowed the blood flow in my leg and caused the dvt?
Many thanks for everyones time, Roy
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