Dear cjmenjou--I so understand how you feel. None of us want to be on rat poison for life. I had a DVT four years before my PE. I was put on coumadin for the usual 6 months. A coagulation workup showed no problems, so I was taken off. Needless to say, I was very happy about that. But 3 years later, I had numerous PEs, misdiagnosed as pneumonia, and last July I had a near-fatal massive bilateral PE. Of course, I'm a lifer now. Being on coumadin is slightly bothersome, but not much more than that. Just try to think of it as part of your routine. Don't obsess about diet. Let your doctors adjust your dosage as necessary. Live your life to the fullest. Do your sports, and have fun. You don't deserve to make yourself miserable over this--and remember--this is a medication that is allowing us to live. As opposed to dying. So, once you calm down and get over your understandable anger, that is what you should do. Live and enjoy your life!

Thanks all... I'm a bit off the edge of the cliff now. Apologies to rmb, I see where you're coming from.

I had my first PEs back in July 2009. I was admitted to the hospital in serious condition and a lot of pain, but I healed pretty quickly, and was feeling "normal" within a couple months. I was so relieved and excited to go off the coumadin in December, back to my normal life, and unrestricted activities.

When I was diagnosed again last week, I went to the ER on the first symptoms, about 5 weeks earlier than my prior diagnosis, so I am in much better physical shape coming out of the hospital. I feel like I did a month ago, pre clots (a bit tired)

So, it's been the emotional rollercoaster more so than anything physical with my recovery. As you have now observed....

I am figuring out ways to continue most of my activities in some way with reasonable safety precautions and compromises to make my wife feel a bit better.

Chris

Way to go Chris, it's not easy to come to terms with this. If you have not done so already then the biggest thing you can do is get some form of medic alert tag that in the unlikely/unfortunate event that you have an accident first responders will know that you are on anti-coag meds.

No worries, Chris.

It's EXCELLENT to see you post this.

I'm really glad to see that you're finding some equilibrium! It'll take some time (and some compromise) but I feel sure that you'll be able to find your way back to your favorite things.

Also, really glad to hear that you got this round of PEs diagnosed so much more quickly than the first. That happened with my two DVTs also, and recovery from the second one was a week versus two years for the first. It may take longer for your brain/emotions to catch up with your body, but it seems like you're making good firsts steps.

I echo rmb on the need for a med alert bracelet. This could be critical (and might help put your wife's mind at ease)...

i'm so sorry to hear this. and you had your trip to look forward to and everything. I don't have advice of a lifer to offer, but I've had other physical life time things to work through and I have to say life is what you make of it. Take the time to grieve over your lost life and then learn to build a new one. I know you can and will when the time is right and you've had time to process everything. Don't give up the things you love however, learn how to incorporate them into your life in a new way. anything's possible if you really want it bad enough. I know it's so easy to get stuck in the shock and traumatic place of all this happening when you thought you were passed it and moving on, but I know you'll get your strength and perspective back and find a way to heal. sending my best wishes always~

Chris, thanks for posting a follow up comment, I have been wondering how you were doing. I am really, really glad you posted your honesty about this issue. I think it will be very helpful for others who come here and are trying to come to terms with being a "lifer" or even a current "short timer".
I hope you are able to find the activities that bring you so much joy and make you feel alive. Good thoughts for you.

CJ, I'm 55 and also a bike racer and triathlete. I'm about 10 days into this and feeling your pain. So what's this shit about not riding while taking cumadin?? I had been experiencing pain and discomfort in my right leg for a couple of years, a condition I attributed to the ergonomics of being a bus driver. Then last week my leg got really swollen and I was unable to walk. I got a quick diagnosis of DVT and went on lovanox and warfarin that day. Yesterday I had an ultrasound that confirmed the sorry diagnosis. My DVT stretches from behind my knee to just below my mid-calf, about 10". 8 days into blood thinners now and my INR hasn't budged. I'm sitting with my leg up, looking at the fresh Spring snow of western Colorado and wanting to go for a run on my snowshoes. I can barely walk to the car. I've never had a PE, but if I get one I hope it kills me. I have no desire to live like this. I was planning a solo assault on the White Rim in a day this Spring, a half marathon this Fall, century road rides, etc. If the pain ever allows me back on the bike I'm gonna be ridin' it dude. SO WHAT'S THIS SHIT ABOUT NOT RIDING WHILE ON WARFARIN?? You can't be serious. If I crash and bleed out so be it. There aren't enough AD drugs or arrogant condesending doctors in the universe to change my mind or give me a good attitude about this. You in Colorado?
Ken

I'm sorry, but this just keeps gnawing at me. Why would you hope a PE would kill you? Of course, you can feel the way you want to feel, but I find that an unusual think to say on a support group for people who survived a PE.

Having a PE is terrifying. I felt like I was drowning, not being able breath, having such a low blood pressure that the EMT could't even find it. I had to be given clot busters in the hospital because my clots were so large that they were going to kill me. I'm so glad I didn't die. I'm so glad my husband and mom didn't have to bury me.

The recovery is hard and there's lots of mixed emotions and you think you should feel elated, but you don't. It can make you feel depressed and on edge. But process those feelings. Recovery is physical, mental and emotional. All three have to be in sync. It takes some time and patience and self analysis, skills most of us don't have a handle on until something forces us to.

My life is normal and managable since the PE. You can bike. You can do most of the things you want to do. THere was a woman on this site a while back who ran a marathon a few weeks after her PE.

I don't give a shit if you hike, bike, run, walk, sit on your ass- as a human being, things are gonna happen in your life that will shake things up and you have to find a way to cope and no one is immune to that. But there's no reason to assume the future is over. This shit is temporary.

So Hip, I don't hope it kills me as much as I hope it just goes away. If it won't go away and I have to live without doing the only stuff I know to do that makes me feel normal and like part of Creation then what-the-hell. Maybe my prolonged respiratory infection this winter that caused me to sit around for 6 weeks and allowed my clot to grow was an undiagnosed PE, who knows? I'm 55, I have over 60,000 miles on my bicycle, by all accounting I've had a good run. I just don't know how to turn the damn page. I'm frightened and alone. Please don't judge me on the basis of your life, mine's different.
Ken

Not judging you. Not at all. I'm really trying to understand where you're coming from and encourage people that this isn't automatically the end of living well. And yeah, I can only speak from my experience and what I've seen from others on this site. For me, two DVTs and a PE and I came out of it ok. That's all I'm trying to say, that there is lots of good livin' to be had.

I'm sorry this happened to you. I'm sorry this happened to anyone. I really am. Life IS scary. Ask anyone who lives in a war torn country or doesn't have a home. My brother had cancer at 21 years of age. I mean, stuff shakes you up that's for sure.

I am not generally a philosphical person. I'm actually pretty cynical. Except I do believe that life is for learning and so the only way I know how to cope with these things that blind side us is to understand that it's not personal and to do my best to learn something from it and know that whatever happens, I'm going to be ok. Yeah, it's hokey but whatever helps you through it.

So Hip is a fun sign I saw in Toronto once -"So Hip It Hurts." I'm not the least bit hip, so clearly, it's meant to be ironic.

You a Canuck, rmb? Got that free health care? I got on the state program for the poor, just hoping they don't decide I don' t really qualify and send me a huge bill sometime in the future. America, where our elected representitives represent the parasites, where lobbyists write their own regulations, where millions die because of greed and corruption. Even if there were a proceedure to correct my condition I would end up living under a bridge somewhere after I had paid for it. It's really hard to think up something positive to say right now.

Swimbikerun, your feelings are all valid. I can't imagine the most important things in the world being ripped away from me like that. My grandchildren mean so much to me, if they were all taken away I think I would feel much like you do, that life isn't living if I can't have them. Keep being honest with what is going on for you, keep in touch.

No, I'm a mid-westerner (Wisconsin) but I love Toronto.

This is going to sound nuts, but sometimes, when I don't feel positive, I just freakin' lie to myself that everything is great until I start to believe it and then I start acting it. Crazy right??? But sometimes it works. It's the same thing when I feel like I've had it with my husband, like when I'm really pissed off at him to the point where I think, man I do not like this person. So, I pretend I do and act like I do, until I remember that I do.

You don't have to think of being all positive and rosey right now. This is just something you're trying to process right now so you can get right with it. I think we all go through that. I did, thinking holy shit, this event has f***ed up my thinking. But you slowly adapt and your thinking evolves. Pain and discomfort does NOTHING to help someone feel good about their situation. I get that. For now, just try to trust the situation will improve.

HANG IN THERE.

Yep, it does sound nuts. Prolly the best I got right now though. Thanks for your empahty and energy.
Ken