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  1. #1
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    Listening to Coumadin lifestyle riders

    My body has thrown 2 DVTs, one in a leg and last one in my arm and I have the Factor V Vierdan recessive gene that makes DVTs. The leg blood clot was explainable related to inactivity after surgery. The arm clot was almost at the exact spot of my landing on a pointed rock that also broke my collar bone. To orthodox medicine I will be a lifetime consumer of Coumadin. Those who are understand. I want to beat the conditions in my body causing the propensity to clot without prescription meds.
    I am asking for readers’ experiences either healing their body naturally or are living taking Coumadin.
    Thanks

  2. #2
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    Lifetime of coumadin for me.
    Won't go off the drug as it is not worth the risk of addtional blood clots and additional heart damage for me.
    After the first DVT and massive pulmonary embolism, I wanted to get off coumadin as soon as possible. Shortly after coming off of a 6 month sint on the drug, I threw another clot and massive PE.
    That one almost killed me outright-docs though I was on the way out-said goodbye to the people I love-got pumped full of thrombolytics- and had a rather exciting life flight to a major hospital-don't ever want to go through that again.

    Once you've had a few clots and have been diagnosed with a genetic factor or syndrome, you are really playing the odds without some form of direct interference for the clotting factor.

    In my opinion, coumadin isn't too bad. I have a home monitor, and adjust my own dose to keep my blood within range.

    Soooo, I played a few games and monitored my blood without coumadin in my system and using natural "treatments"-guess what, nothing effectively kept my INR within the safe range for any length of time. Only coumadin "safely" does the trick in a way that can be easily monitored and adjusted.

    So it's coumadin for me.

    BTW, with an enthusiastic intake of alcohol, you can stay in range with a much lower level of coumadin in your system.

    Anyhoo, wish I saw this post a few days ago when I saw your rig parked in the lot of the health food store in Sedona. Always happy to see other riders still getting after it on the trails with the addtional risk of anticoaugulants and blood clots in their system.

  3. #3
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    Thanks for info, Norman.
    BTW I am still hanging in Sedona.

  4. #4
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    Pradaxa guys. If you live in Europe, it has indication for DVT. If you live in America, it is only indicated for non-valvular atrial fibrilation.
    Good thing about it, other than its efficacy, is no INR testing and you can eat whatever!! Say goodbye to warfarin clinics!
    Ask your doctor about Pradaxa (dabigatran).

  5. #5
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    Fortunately/unfortunately the replacement of coumadin with dabigatran is considered an off label use for people with clotting disorders at this time in the USA.

    Access to the drug for people with known clotting factors is going to depend on a forward thinking doctor or a doctor and patient willing to take risks at this time.

    Overall vibe appears to be that this may finally be an alternative to coumadin that won't trash your liver and kidneys, will have less bleeding risks for the effective dose, and be easier to monitor.

    I know a clotter that plans on making the switch, very interested to see how it goes.

  6. #6
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    I read that Pradaxa is non reversible which presents a bleeding problem for surgery.

  7. #7
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    Reversible with Fresh Frozen Plasma.

  8. #8
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    The thread that just won't go away... so relieved to know there are bikers out there who continue to ride while on warfarin/coumadin!

    About two weeks ago, I noticed my right calf was hurting a bit. I figured I just tweaked it. Christmas came and went and I continued to ride. The calf still kinda hurt but it actually felt a bit better afterwords (I assumed I was just stretching out the muscle). Fast forward to New Years Eve day after my 2nd ride in two days and the calf is still hurting. I happen to notice it is swollen. Wife starts searching the internet saying "you could have a blood clot". I'm like.... nah - its just a muscle. She keeps pestering me and then I call the nurse line. They told me see a doctor as soon as possible and advised urgent care is open 1/2 from 8-8. So I go to the urgent care the next day, walk in and see like 80 people waiting and I'm like "screw this, I'm not waiting around for a muscle ache). On Tuesday morning, I called the doc and got an appointment for the afternoon.

    Oh hey - a new paragraph!

    The doc looks at it and says: "I really dont' think this is a blood clot, but lets get you an ultrasound just in case". I head over to the imaging place and as the tech leaves, I ask if I can sit up and she says: "I wouldn't if I were you". From there, its back to the doctor immediately, then off to the hospital for tests, then off the the pharmacy so I can pick up the warfarin and the shot thingy (forget the name).

    Bottom line: I waited about 2 weeks with lower leg pain and kept on riding. If the clot had broken loose...

    So... take swollen lower body parts seriously and see the doc!

    My doctor has encouraged me to continue exercising (I swim and bike) but the anti-coagulation center person suggested I wait until my LNI is in therapuetic range. So that is what I'm doing.

    Anyway... sorry if you read all this, but typing it out makes me feel better -- the whole thing has been a surprise and scary thing and depressed me. So glad that I'm not alone in the MTB world and can get back to my passion soon.
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  9. #9
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    Also - one of the side effects is depression meds. Anybody experience i?. I'm finding myself getting easily frustrated, and extremely emotional (sad) since starting the meds.
    2015 Trek Farley
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  10. #10
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    sandyeggo,
    My first blood clot years ago caused me to become depressed also. I felt my body let me down. I have since accepted the fact that my body inherited Verdan factor 5 which causes blood clots. I would ask to have my blood checked to find if I have the gene. I have been riding almost a year since starting on coumadin. My only issues so far have been from the cuts and scapes that bleed a bit longer but finally clot. Protect your head from blows as concern is cerebral bleeding.

  11. #11
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    Quote Originally Posted by JP Nuts View Post
    sandyeggo,
    My first blood clot years ago caused me to become depressed also. I felt my body let me down. I have since accepted the fact that my body inherited Verdan factor 5 which causes blood clots. I would ask to have my blood checked to find if I have the gene. I have been riding almost a year since starting on coumadin. My only issues so far have been from the cuts and scapes that bleed a bit longer but finally clot. Protect your head from blows as concern is cerebral bleeding.
    Thanks JP. Good to know I'm not alone. I just picked up mountain biking again in April and covered more miles than I ever have, dropped 30 pounds and was feeling good. Now this. Its like all that hard work and my body rewards me with a blood clot! Its been 7 days since I last worked out and its driving me nuts. Looking on the bright side, losing the 30 pounds and doing all that exercise should help me heal faster than if I was still the lazy slug I used to be, right?

    Docs say I can exercise but I'm still in too much pain (I'm waiting till my INR gets in the therapuetic range before I ride though). The swelling and pain in my clotted leg is finally starting to feel better today... Only to have my knee on my good leg hurt like hell because I've been favoring. Perfect! To top it off... it has been unseasonably warm here and I'm missing perfect biking weathe.r Oh well -- Gotta keep my head up though - I'll be back riding soon enough.
    2015 Trek Farley
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  12. #12
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    Quote Originally Posted by JP Nuts View Post
    sandyeggo,
    My first blood clot years ago caused me to become depressed also. I felt my body let me down. I have since accepted the fact that my body inherited Verdan factor 5 which causes blood clots. I would ask to have my blood checked to find if I have the gene. I have been riding almost a year since starting on coumadin. My only issues so far have been from the cuts and scapes that bleed a bit longer but finally clot. Protect your head from blows as concern is cerebral bleeding.
    I just got my results back from the lab. As it turns out, I'm a lifer as well -- Factor V Leiden for me... Oh well. At least it has been diagnosed, and I'm on the proper medication and shortly back to shape I was before this all started.
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  13. #13
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    I recently was in hospital for a clot in leg.... and was told I can't ride, or do much of anything for months. So, Sandyeggo, I hope you're doing well and riding. It's been two weeks for me, and it's been tough not riding. I went from 4 to 5 days a week down to zero.....

  14. #14
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    Quote Originally Posted by mjh365 View Post
    I recently was in hospital for a clot in leg.... and was told I can't ride, or do much of anything for months. So, Sandyeggo, I hope you're doing well and riding. It's been two weeks for me, and it's been tough not riding. I went from 4 to 5 days a week down to zero.....
    Hang in there! I was down for about 2 months -- but not so much because I was told not to -- I was in too much pain with the clot followed by other knee and foot issues back to back to back. The day I was diagnosed I asked the doctor about riding and he said that I could do pretty much whatever I wanted (other than contact sports) as long as I wasn't in pain. He also warned me to make sure I wear a helmet and get checked out after a fall b/c of concerns of internal bleeding due to coumadin.

    After those first two months, it was difficult to get back on track and into riding shape -- sitting around and not riding depressed me so I compounded sitting around with eating poorly (still trying to break that habit, lol!). But now I'm back to riding 4-5 times a week and feeling better every day. Don't really notice any side effects with the meds, but I do wear a cool medical bracelet at all times (and by cool, I mean dorky). I also make extra sure my wife knows where I'm at, when I start, and when I finish when I ride alone.

    The biggest pain in the arse for me is keeping my INR in the therapeutic levels. After 3 months, I am just now starting on only having to go in on a monthly basis!

    I know it sucks but you'll be back at it before you know it. If you have any questions (that aren't questions only doctors should answer), let me know. I'm happy to answer based on my experiences.
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  15. #15
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    I tweaked my right knee/calf a bit about a month ago. Walked around with a sore calf (upper behind the knee) for a couple of weeks. I then felt soreness in my groin and went to get it checked out (they sent me home from ER first time around stating that I didn't have "dvt legs"). I actually had a dvt that travelled to my groin from behind my knee. Brutal, thankful that I didn't get a PE from it.

    I was in the hospital for about 5 days getting lovenox shots in the stomach every 12 hours plus starting coumadin. Once I was therapeutic they let me go. I had a follow up with my endovascular guy and to my surprise he said I could ride right away but just don't take any headers and be careful not to get cut up.

    I still haven't gone riding yet but think I will soon as I'm going crazy without it.

    I had superficial venous thrombosis in 2005 and had both greater saphenous veins ligated. This was my first DVT. I will be on coumadin for 6 months. I'm starting to wonder though if I will be a lifer due to clot history. I was tested for verden factor back in 05 but didn't have it. DVTs are so scary that a person almost wants to be on blood thinners forever just so it doesn't happen again!

  16. #16
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    Quote Originally Posted by hi desert clyde View Post
    I tweaked my right knee/calf a bit about a month ago. Walked around with a sore calf (upper behind the knee) for a couple of weeks. I then felt soreness in my groin and went to get it checked out (they sent me home from ER first time around stating that I didn't have "dvt legs"). I actually had a dvt that travelled to my groin from behind my knee. Brutal, thankful that I didn't get a PE from it.

    I was in the hospital for about 5 days getting lovenox shots in the stomach every 12 hours plus starting coumadin. Once I was therapeutic they let me go. I had a follow up with my endovascular guy and to my surprise he said I could ride right away but just don't take any headers and be careful not to get cut up.

    I still haven't gone riding yet but think I will soon as I'm going crazy without it.

    I had superficial venous thrombosis in 2005 and had both greater saphenous veins ligated. This was my first DVT. I will be on coumadin for 6 months. I'm starting to wonder though if I will be a lifer due to clot history. I was tested for verden factor back in 05 but didn't have it. DVTs are so scary that a person almost wants to be on blood thinners forever just so it doesn't happen again!
    Glad to hear you got it before you developed a PE. Once I got past the pain of the clot (followed by other knee/foot issues) I got on the bike. I've ridden about 400 miles since the diagnosis. I was worried the first few times I rode but after that I don't even think about it much.

    I do where a medical bracelet (that looks like the livestrong bracelet) in case something happens so medical folks know I'm on blood thinner. I also carry a first aid kit in case I get cut (I think a first aid kit is a good thing to have, anyway).

    I'm a coumadin lifer. The anti-coag clinic I go to said that they may end up changing the monthly blood testing to 6 months for those that have a history of having a steady number - that sure would be nice. I'm also hoping that they'll develop new meds that isn't as sensitive to changes in diet, medication, etc - more of take and forget it kinda med. ;-)
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  17. #17
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    Quote Originally Posted by hi desert clyde View Post
    I tweaked my right knee/calf a bit about a month ago. Walked around with a sore calf (upper behind the knee) for a couple of weeks. I then felt soreness in my groin and went to get it checked out (they sent me home from ER first time around stating that I didn't have "dvt legs"). I actually had a dvt that travelled to my groin from behind my knee. Brutal, thankful that I didn't get a PE from it.

    I was in the hospital for about 5 days getting lovenox shots in the stomach every 12 hours plus starting coumadin. Once I was therapeutic they let me go. I had a follow up with my endovascular guy and to my surprise he said I could ride right away but just don't take any headers and be careful not to get cut up.

    I still haven't gone riding yet but think I will soon as I'm going crazy without it.

    I had superficial venous thrombosis in 2005 and had both greater saphenous veins ligated. This was my first DVT. I will be on coumadin for 6 months. I'm starting to wonder though if I will be a lifer due to clot history. I was tested for verden factor back in 05 but didn't have it. DVTs are so scary that a person almost wants to be on blood thinners forever just so it doesn't happen again!
    I'm glad you're ok, and that this was caught before it became a PE or worse. My 'episode' started on March 21st. I went on my first ride the first week in May. You just need to be careful and not take too many risks. But riding will be fine. I am on Lovenox, I had a bad reaction to the Coumadin that put me in the Hospital. So injections for me twice a day, at least, until November. They still haven't figured out what has caused my clots. If you have the ok, get back out there and ride, it will make you feel much better (just be careful)...

  18. #18
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    OK. So I have been on Coumadin now for 16 months. I have an insurance provided home monitoring device that I test my INR weekly. I have noticed fluctuations in results that have neccessitated adjusting my dosage. I had a 5.9 value that took several weeks to get down. A monthly check would not have allowed a timely response.
    Bleeding out from a serious cut is an issue but most importantly is a blow to the head w/ cranial bleeding. A helmet will keep the bones contained but it does not stop the brain from hitting the inside of the cranium.
    I sport numerous scratches on my fore arms from sharp objects. Blood flows for a bit until the wound clots w/o my assistance.
    I beefed up my first aid kit but have used it more on other riders than me. I discovered that there are large parts of my body that I can not bandage.
    I wear a RoadID that ties into my medica records.
    Exercise restraint when pushing your ability. I am enjoying a slower pace.

  19. #19
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    Thanks to everyone for sharing your experiences. It certainly helps to know there are others out there that work through this every day. I hope to start pedaling soon. Coumadin is kinda makin me feel "blah". My INR was 4 today so they had me skip a dose then drop from 7 down to 5mg thru Friday and then go from there.

    JP Nuts: I hear you on exercising restraint. I'm all about slower paces and taking it all in, especially now at the ripe old age of 39!

  20. #20
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    I should add that my doctor encouraged me to get back to exercising as soon as I was no longer in pain and I specifically asked about my favorite exercise - mountain biking. He said that is fine but if I have a wreck to get checked out (even if I don't think it was severe) to make sure I don't have any internal bleeding issues. With something like this, you should definitely talk to your doctor before exercising.

    My doc did say no more football for me which is a shame b/c at 5'7, no running speed, no ability to tackle, and 41 years of age I was planning on giving it a go on trying out for a professional football team. That dream has been crushed... I wonder if the doctor would approve Rugby...
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  21. #21
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    crawled on and rode around the block. It felt pretty great. Definitely have that dead leg feel a bit in the clotty leg but other than that can't complain. My back pain that I was attributing to the coumadin has subsided substantially. You know I thought about it awhile and realize that mountain biking is kind of a brave crazy thing to do while all thinned out. The doc may as well approve rugby, huh?

    Cant wait to try again tomorrow.

  22. #22
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    glad to find this thread. pretty down right now. I broke my foot a month ago and it hasnt been healing all that well. then monday i got my cast wet and went in to get a new one. I told the doc my calf is hurting and they didnt think it was a clot but wanted to check to make sure. well it was and now im starting my blood therapy. Its nice to see that im not alone. scary stuff but im glad i got my cast wet. A DVT sucks but PE sounds horrible. hopefully i wont be a lifer but if i am at least i know i can ride.

  23. #23
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    BigE610,
    Dont be down. Everything will work itself out. I had to switch from warfarin to brand name coumadin due to an allergy to the generic but other than that, I've been good. I've put down quite a few miles since my last post above and feel pretty good. I'm just taking it slow and doing mostly flat lander stuff but its working ok. Did your doc OK riding again once the foot heals? How long are you going to be on thinners for?
    The biggest thing I've learned so far is diet consistency with the vitamin K thing while on thinners. I was trying to avoid it completely at first but realized the error of my ways.

  24. #24
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    I'm really glad I found this forum also. I've been feeling pretty bummed out about after being told I shouldn't do any activities where I could receive a head injury. I didn't have a DVT but I did suffer a major "lung attack" with multiple PEs. I ended up with 10 large bold clots in my lungs and dang near lost my life. The Hemotologist was totally bewildered by the whole thing and basically couldn't explain how I didn't die. After genetic testing it turns out I have 4 genetic abnormalities: protein C & S deficiencies, elevated homocysteine level + MTHFR. Long story short, my blood persistently wants to clot. Therefore I'm on Coumadin and Folic acid. Well, it's been 3 months since the event, and I feel perfectly fine other than getting winded much faster than I used to and a little bit of weezing if I get really winded. I live in Colorado and love to bike, hike, snowboard, etc. I was thinking I wouldn't be allowed to ride ever again, but now I'm thinking I need to get another doctors opinion and see what they say. I think road riding is out because it's so easy to get hit by a careless driver, but I would love to get back on the trail again .
    Quote Originally Posted by JP Nuts View Post
    sandyeggo,
    My first blood clot years ago caused me to become depressed also. I felt my body let me down. I have since accepted the fact that my body inherited Verdan factor 5 which causes blood clots. I would ask to have my blood checked to find if I have the gene. I have been riding almost a year since starting on coumadin. My only issues so far have been from the cuts and scapes that bleed a bit longer but finally clot. Protect your head from blows as concern is cerebral bleeding.

  25. #25
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    Update 3 years later: I am still riding same exposure to risk. No body slam falls, only scrapes and scratches that bleed and are thinned w/ sweat riding back here in the Appalachians makes for lots of blood red. They clot soon enough for me not to be a worry. Successful rotator tear arthroscopy repair.

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