I LOVE COUMADIN!

You probably don't hear that too often.

It's the truth. I absolutely love it.

How's that for an introduction?

I've been lurking here since I had a DVT and a massive saddle PE 6 months ago. The doctors said that they usually see clots like mine during autopsies. That provided an interesting perspective.

I've learned a lot from reading your stories and it has helped answer questions and provide some degree of what to expect. Seems that the after effects and recovery are different for just about everyone.

I decided to post because I survived another massive PE a month ago. I had finished out my prescribed 6 months of coumadin and was off it for two weeks before I experienced another massive saddle PE.

This one progressed to respiratory failure and right heart failure quickly. Fortunately my doctor instructed the ER docs to dose me with Alteplase and I'm certain that the thrombolytic saved my life.

According to the doctors, I'm the only one they have ever seen respond to their directive of "You'll be on coumadin for life" with "That's great. I'm looking forward to it."

Been diagnosed with the Lupus anticoagulant and APS. Apparently it's in overdrive right now and that's why the massive clot formed two weeks after stopping coumadin. Interestingly enough I had no warning signs of a DVT this time around. Never saw it coming.

I'd encourage everyone who has a DVT and/or PE to get the genetic testing done. My initial DVT and PE were thought to have been triggerd by an epic bike crash and that it would be a one time experience. That wasn't the case.

So, I'm over the fear and wonder about coumadin and honestly very happy to have a medication that has a good chance of keeping me going.

I believe that with a bit of modification and risk assesment, life on coumadin can be almost normal. It's up to each individual to define their comfort level and risk tolerance.

I currently have several complications from the DVT and PEs. Some will be permanent. Some may resolve.
Most of my questions have been answered. Everything is manageable at this time and I've got a great doctor to monitor my conditions.

I'm one month out from a massive PE and a substantial lung infarction and I'm already back on my bike. Granted slower and wheezier, but being active is essential for me to have a positive frame of mind. I credit the quick turn around to the thrombolytic treatment. Knowing what I know now, I would have demanded it the first time around. Rough way to learn that.

With standard Lovenox and coumadin treatment the first time through, I dealt with months of pain. I had substantial scarring in my lungs and it took a while for the clots to resolve. The pain was amazing. With the Alteplase the second time, the pain and all the nasty things associated with DVT and PE were almost unnoticeable an hour after the treatment started.

I mentioned that I have a great doctor. He's realistic about the toll that two massive PEs take on the body and living with vein damgae after DVT, but he's far from doom and gloom. He's encouraging me to get a home INR monitor. Apparently not many in the USA have them yet, but they appear to be popular in Europe. Looks like I'll be getting one soon so I'll post back about using one for you fellow coumadin lifers. I'd be pretty happy to decrease the trips to the blood lab and would be happy to keep the needles in my veins to a minimum from here on out. Home INR testing is done with a finger stick.

Long rambling introductory post I know. Thanks for reading. I appreciate those who have posted their experiences and questions. There's not a glut of personal/survivor stories out there and the bog stock medical literature appears regurgitated and homogenized.

Ok, I agree, I do not often hear that, what kind of weirdo are you?
You are a MTBer, say no more.
One, like many of us.
Andy, first off,let me welcome you to LADVT and sorry that you have to be here in the same breath/sentence...
What a storie!!! Yes you are a survivor!!!
Yes more and more Dr are starting to prescribes these Home INR monitors, they are worth it,like you said it decreases your trips to the clinics and also it improves the quality of life, less blood draws, you can actualy stick yourself when you want not just when you need,(now I'm starting to sound like you, LOL) I do have a video in the video gallery that explains the pros of it...
Glad you found the place and that it has served you.
Welcome aboard.

Thanks Dero.

Yes, I'm happy to be here. Very happy in fact.

I'm still a mountain biker, I just ride slower on the downhills and have no shame now about getting off the bike and walking the big rocks and drops. I credit the bike with speeding up my recovery from both PEs and helping to lyse much of the DVT in my leg. Downhilling at the local bike park is pretty much off limits now. I have a new appreciation for long and boring fire roads.

It's all pretty good. It's all very different. As the site says, life does go on after DVT.

I hear you Andy, many folks have kept on ridding, I took the decision not too until I was OFF the anticoagulants (which MAY happen this spring, we'll see). Most of the rides, I would come back with a cut or ten and some times, it would be deep ones, that is why I took that decision. If I had to start again, I would do the same thing.(knowing thyself, I guess).

Andy,

Welcome to the group!

I am a retired XC racer from Connecticut. My first DVT/PE happened back in 1992 following by a second DVT in 1995. In 1996 I was diagnosed with Factor V Leiden thrombophilia.

In between 1992 and 1995 I enjoyed a successful amature racing career here in New England dispite the fact that my naval doctor told me I would probably never regain full use of my left leg. I proved him wrong by finishing in the top 10 both in 1993 and 1994 in the Norba Northeast racing circuit and the Eastern Fat Tire Association New England racing series. Of course in 1995 I just finished competing in my first (and only) downhill race up at Sugarloaf Maine (finished fourth in that race, only hardtail rider racing the course). I woke up the next morning for the 30 mile XC race to a familiar pain in my calf. In 1996 I tried making a comeback despite a bad racing season. Up at Sugarloaf Maine I ended up bending the handlebar on my new race bike as it broke my collarbone. I decided I was getting too old to race and really disliked getting hurt.

Anyways, I still ride casually today while on Coumadin. I make sure I carry a fully stocked first aid kit with me on my journeys. I must say I am on low-intensity Warfarin treatment for life which means I have a low target INR of 1.5-2.0 which appears to keep my bleeding in control when I do crash.

Regards,
Tom in Connecticut

I love mountain biking. Started riding in 1984. I'm 35. I've spent a lot of time on mountain bikes. Hope to spend a bunch more time. Heading to Moab this month.

After the first PE I backed off on the mountain bike and spent time on the road bike. At that time I thought it was 6 months of coumadin and then back to life as it was before. I was wrong there.

Currently I'm more concerned about trying to recover from the PEs and avoid the really serious complications from those. I think exercise is the best shot I have in doing that. Riding has helped tremedously with all the scarring in my lungs.

Since it's anticoagulants and the real risk of another PE or DVT for the rest of my life, I don't feel like I can wait around. What I've got is now. I can still ride now. Riding makes me happy.

The whole PE, DVT, vein damage, and Lupus Anticoagulant thing can be pretty overwhelming. There are no guarantees.

I like hearing from people who choose to keep riding and those who choose to hang up the bike while they navigate DVT. The different perspectives are good. The experience is unique to the individual, but we all benefit from hearing from others in our situation.

It's been very interesting talking to different doctors. I've was told by one "don't go fly fishing on coumadin, if you slip and hit your head you could die." I asked if I should give up mopping the kitchen floor while on coumadin as well. That didn't get a laugh. Other doctors have said go live your life as you want to. I do believe that if you keep looking you'll eventually find a doctor who tells you exactly what you want to hear, and that's rarely the best thing either.

You really need the perspectives and opinions from people on each side to make an educated decision. Once you've made up your mind, why waste time? Get on with living as best you can.

Andy,

After my PE in 1992 it really didn't affect my exercise routine; although in the winter I felt like it was harder to breathe when riding.

Here's a link to a brochure on APS that my organization created that you might be interested in reading:

http://stoptheclot.org/natt_publications/antiphospholipid.pdf

Additionally, here are some other links worth reading. The first if from my organizations Fall 2006 Newsletter focusing on athletes and blood clots:

http://stoptheclot.org/Newsletters/NATTFall06NwslWeb1.pdf

And the second is a Web Blog from a Triathelete in Ohio. Roland Varga is the husand of a genetic counselor which is a member of NATT. On his web blog he has a section titled "Athelete of the Month" which focus' on athletes who suffered a DVT/PE. The story most compelling belongs to a friend of mine, Leslie Smith, who was a Army Captain who suffered a DVT in Bosnia. She was sent back to the U.S. for treatment, had an adverse reaction to Warfarin which eventually result in the loss of her leg. Then while on Lovenox suffered a clot which left her partially blind in one eye. This young lady is a true inspiration and as you read her story you'll understand why.

Also, Roland sells "Stop-the-Clot" Wrist bands and technical jerseys were are pretty neat. I have mine for this years biking season. They won't miss me on the trail.

http://clot-buster-triathlete.blogspot.com/

Regards,
Tom in Connecticut

http://clot-buster-triathlete.blogspot.com/

Hi Andy

Nice reading your post. I just have to say that you are a breath of fresh air! I love your positive "I love Coumadin" statement and its absolutely true what you are saying - it is what is keeping us alive, how can we not love it?

It is great to meet you and I am glad that you have joined us. You have had quite an ordeal and still you remain positive and living as normal life as possible...very inspiring!

All the best,
Madeline

Andy and Tom from Connecticut, thanks for posting your stories. They have given me renewed hope that I can get out there and start doing se activities again soon.
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 (specifically biking and snowboarding). 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 for the duration. (I'm 42yrs old) 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 .
Thanks again,
Stevo from Colorado

SPECIALLY being in Colorado... Welcome Stevo, I have to add a few changes to my last post in this thread, I did stop the anticoagulants and did start ridding again in 2009, BUT, the next year I had another cloth so since 2010 I have been a lifer on anticoagulants and I'm also a lifer in the saddle, yes I'm ridding again, I re-evaluated the whole situation and I had issues with living without ridding.
I have taken a few spills, had a yard sale here and there, but the bleeding were controllable, so much that I'm still here talking of them.
It all depends how comfortable YOU feel about the whole situation ( to ride, or not to ride).

I was feeling some depression creeping in. My wife and i moved here years ago because of the mountains and our love for all things mountain related...biking, hiking, camping, snowboarding, etc. I love the outdoors and I love to ride (road and mountains) but especially Mtn biking. I also have 3 kids and I can't wait to ride with them one day also. It would kill me not to be able to enjoy these things I love with them.