I felt the same way. But I'm getting used to the idea of being on coumadin and a more realistic view of the risks. Having the PEs and being told I was lucky to be alive didn't really affect me that much emotionally. I guess it didn't seem real to me. When the tests came back and I was told I was a lifer though, I was devastated. I thought it meant I would never mountain bike again. That made me want to sit in a corner and cry. When my friends posted their bike trip pictures on Facebook, I couldn't even look at them.

I've talked to my dr. about this though and he has encouraged me to continue to live my life and do the things I love with caution. He has reminded me that none of us can completely avoid risk. So, two weeks ago I went downhill skiing. I wore a helmet and made sure I was always completely in control. As the dr. said, if I had slammed into a tree at full speed even before being on coumadin, it could have killed me. So, I just need to make sure I don't hit a tree. This week I got back on the trail on my mountain bike. I approached the trail differently. Before, if I wasn't bleeding at the end of the ride, I assumed I hadn't pushed things far enough. This time, I took the bypass at anything technical and I took no risks. I rode with friends and also wasn't far from medical care if needed. It wasn't the same but I was glad to be out there.

I'm 4 months out from the PEs now and feel like I'm negotiating my new life. It took me 2 months to physically be able to do much and another month to mentally decide what I could do. I think I've reached a balance now.

If your wife thinks the bike is just too risky, could you start with some swim/run duathlons? Maybe when the scare is older, she might feel more comfortable with you getting back on the bike. If you were strongest on the bike, this might be time for you to strengthen the other legs of your tri. That sure would have helped me on the few triathlons that I've done. :-)

If you were seriously training for triathlons you were already fixated on your diet. Now you just need to make sure you are consistent with your vegetables. As long as you do that, your dosing can be set to match your lifestyle. I worry way less about my diet now than I did when I was racing.

The INR tests are a pain but as you get stable you won't have to have that done as often. I just graduated to testing every other week instead of every week. This was the first week since Nov. that I didn't have to go in. It was great!

Hang in there and get out and do what you can. Run and swim with your friends and focus on what you can do.

I don't know much about the exercising professionally stuff, but I know some of what you are talking about Jan and cj. I used to go to the gym 3 or 4 times a week before November. I would weight lift, treadmill, swim, etc. I felt up to trying the gym in December, but was so worried about what would happen. At that time I was still going to the anti-coagulation clinic a few times a week with pretty high INRs. This is also now my first week not having to go in because I, too, just graduated to every other week. It's been 4 months for me, as well. I am less worried about what might happen, but it definitely took time. My medical team just cautioned me, but after the first month or so told me I didn't have to completely give up activities, but just be careful. They told me if anything should happen to go to the ER immediately. So that's what I keep in mind.

You will get used to it, but it does take time. Keep your head up and don't give up. That only causes more problems.

You have a choice, let being on Coumadin run your life, or take control of your life, do the things you used to do but try and take extra precautions, maybe on the bike find the helmet that gives you the most protection rather than the fastest time, find some more padded kit rather than stuff that will gain you an extra 0.5s.

Easy to say? yes but I am on life long coumadin have been since August 07, and at the start of 09 I took time out and went skiing for 13 weeks and qualified as a ski instructor, I ski pretty much everything on the mountain, bumps, glades and double blacks I just try and make sure that I take a little more care than perhaps I did before.

I've just had major surgery for a recurrence of my cancer before the surgery I was told to get fit so I took up running without any problems.

As for diet, that's the job of the anti-coag clinic, they adjust the dose to your life style, you don't adjust your lifestyle to the dose, the only thing you can't do is binge on stuff that affects your INR, eat consistently the occasional addition of something that affects INR isn't going to be a problem it will cause a blip but then come back to normal.

The thing that helped me the most was being able to self test with my own meter.

I'm a lifer too. I'm not a triathlete (not sure I qualify as any type of "athlete" right now), but I can totally understand your frustration with "being alive" but not really "living."

I think both you and your wife are in a state of shock right now. It sounds like emotions are running high and I could see why. This will be an adjustment for both of you. Give yourself some time to feel angry and frustrated--this is totally allowable. You can go about the business of figuring out how to reclaim your life later, after the initial fury has worn off.

And you CAN reclaim your life, as some of the other posters have said. Decisions and ultimatums made in the heat of the moment can be re-evaluated later. Hang in there and always feel free to vent here.

Good response Markarina.

I'm sorry you have another clot. And I understand the anger.

I hope as you process this information, you will come to an understanding that life is not over. An athlete requires a certain amount of mental strength, so you may want to tap into that as you try to deal with this.

If your work or your hobbies or your sports absolutely define who you are as a person, then there's a bigger issue here than getting another clot. Also, as far as future risks, well,it's not like sky diving, bull fighting or sword swallowing was your life.

Getting a second clot sucks. It happened to me. And within a half hour of diagnosis, I just moved on. I mean, I'm not an uber athlete so maybe tin some people's eyes that's suppose to make it less devastating to a person but it doesn't. I don't like taking warfarin and getting tested all the time, but you deal with it and figure it out.

There are so many people who die from clots, from cancer, from whatever who would probably love to have a second chance at life if they could.

Hope you find your way through this.

I am so very sorry. There is a grief process that needs to be gone through. You are right, the life you had "before" will never be yours again. Get mad, cry, throw things, swear, scream, do what you need to let give outlet to your emotions. Anger is a natural part of the grief process. Who wouldn't be angry at having their life stolen from them?
My mom developed Rheumatoid Arthritis at the age of 30. She was almost completely crippled by it, and has lived with it for over 40 years now. Once she expressed to me that she was a little sad that she never got to ski. She had always wanted to. I asked her, how come you are okay with giving up that dream? She answered, " there were many dreams I had to give up, like going through a single day pain free. You learn to dream new dreams."
She went to law school instead, in her 40's, and eventually even became a judge.
I hope, when the anger is gone, you too, will find a way to make new dreams a reality. Hang in there.

lakotajo, I agree with your message. Just a couple of months ago I found that it felt like going through the grief process, just a bit, after Don died 2 years ago. I admire your mom and her attitude and you express the same type of beliefs.

I get upset with the fatigue, on and on, but know how fortunate I am to have survived the bilateral PEs myself. On my worst days, I write down a Gratitude List and it helps me, as strange as that may seem.

Hugs, Cindy

Rmb, I am glad you were able to move on so quickly after your second clot, but please do not armchair psychoanalyze me. You know nothing about me or my background or what my activities meant to me. I characterized no one else's process, so the "uberathlete" comment was uncalled for.

I had thought this was a place to come for support

Of course I know nothing about you. I don't know anything about anyone on this site. You don't know anything about me. That's kind of the nature of a public forum.

I too thought another clot would be the worst thing that ever happened to me. I mean, that's all I did when I was off warfarin after my first clot- worry if I was going to get another clot. Well, the worst thing I thought could happen did happen; I got another clot. But somehow, when it happened, I realized, no this is not the worst thing that ever happened to me. So, honestly, I readjusted my thinking in like a half hour. I'm not saying you should come to terms with this in a half hour. I was trying to point out that we can adjust to events in our life. Life is a series of adjustments, clot or not clot. If you had a friend that this happened to, would you tell him, wow, dude, your life is so gonna suck now? Of course not. Well, maybe you would. Like you said, I don't know you.

I'm a big picture thinker. Clearly, it appears that's not how you roll. My mistake.

I'm still sorry you have another clot.

And sorry you took offense to the term uber athlete. I use that to separate the average active person from people who truly compete and live eat and breath their sport. It wasn't a slam. Holy cow.

Very active for many years, also now a lifer. I wish I could tell you something - anything - about reconciling the desire to keep up outdoor activities (continuing to live) with the judgment of others. I'd have to say it was a bit scary having that first major bicycle wipeout while on the stuff, especially with the size of the ensuing bruise, but it all healed in a week and a half. I did get it arranged with the doctor to bring the dose down a tad to keep the INR from sneaking over 3.0. If you can get it arranged to test your INR more frequently, such as with the use of a home meter, you can at least show that you are keeping the effects of the meds in target should you get into a pickle.

Chris,
Being down is normal, this is a really big adjustment for all of us here, and frankly sucks! I remember lying in the ICU thinking "when I get back to work on Monday..." hahahahaha that was clearly delusional. Well now 8 months later I have had to change how I think about my recovery from a sprint to a marathon. The worrying is still there, but less consuming, the things I had to think a lot about (meds, doctor visits, tests, etc.) have become second nature... Do I still hurt, sure, do I still think about having a normal life not dictated by clots and anti-coagulant therapy, sure, do I consider that may or may not happen, sure... It is a BIG adjustment, each of us deal with it in our own unique ways, but we do adjust over time! There is a huge emotional component here and if you weren't angry or depressed you wouldn't be normal (IMHO), this too is part of the healing. Hang in there, there really is life after clots. -P

Things you might want to think about are, how many crashes did you have before being on Coumadin? is this likely to increase because you are on Coumadin?

Also I've found that some anti-coag clinics can be a bit inclined to scare monger, mine said I should be really careful playing golf in case I got hit on the head by a golf ball. In 30+ years of playing golf I've only known two people be hit on the head, though unfortunately one of them was me!!!

People who come to DS not only get support, they sometimes get awareness of different attitudes, new information, strong opinions or a swift kick in the ass to get em out of a funk. To paraphrase Forrest Gump, "DS is like a box of chocolates..." yeah, you know the rest of that sentence.
And here's my opinion, from one lifer to another - you'll be amazed how quickly you adapt and compensate, once anger, frustration and fear passes. If it's important in your life, you'll adapt.

I know how you feel for many years fitness helped define who I was.
After my first P.E. I countinued to do weight lifting and had 3 or 4 more
PE's. After the second one I stopped. Breathing and tiredness just got
to be too much. The second PE came after I just quit wafarin cold turkey. It made me feel weak and humiliated. My life just started winding down after that. Now I have two filters, one in each illiac vein.
If you spend a lot of time on a computer like I do I recommend you
learn to use it standing up as much as possible. I'd work out at the
gym and then or the heart trail and then sit at my computer for hours. One doctor told me that I was more suseptable to DVT and
PE's because I have a slow heart beat. Which I think come's from
being in good shape. Once I read an article in Runners World which
claimed about 80% of the DVT cases on airplanes were from athletes and it went on about the slower heart beats. One 20 something track athelete had a PE after living a plane. Numerous people have died this way. I'm a lifer on Wafarin now.