Hi and welcome! Sorry you had to join us.

I think a lot of us get hit hard by fear, worry, and anxiety after diagnosis. I'd even clotted before (DVTs) and the diagnosis of PEs hit me like a ton of bricks.

It can be really hard for the first few weeks getting your head around what happened and getting used to the changes you might be experiencing in terms of exhaustion, pain, etc.

I will tell you that if you've searched on the internet, you'll come across tons of scary stories about PEs. The vast majority are about undiagnosed PEs. Those are the ones that are really dangerous. Once you've gotten diagnosed and you've gotten started on the meds, you're already on the road to recovery. Once you're treated (and with every hour that passes since diagnosis), those clots become less and less dangerous. It might not feel like it right now, but your body is already dissolving those clots (the meds don't do that) and you're already starting to heal.

Which is not to say that recovery is quick and easy. It can be really hard for a while, both physically AND mentally. You should seriously think about whether you feel ready to head back to work on Monday. I went back four days after getting out of the hospital, but I was on a reduced schedule for about 3-4 months. Other folks stay off work for a lot longer. Some folks jump right back in full-time, just because it helps them feel like they're heading back to normal. Definitely be honest with yourself about what you're up to and what you want to do with yourself over the next few weeks.

And, keep an eye on that anxiety and fear. It can seriously take over your life if you let it. I fought with it for a while, but finally decided to take anti-anxiety meds for a couple years. I also saw a therapist for a few months who specialized in people who had survived traumatic events. Both were really helpful, but I know those things aren't for everyone. You might also look at journaling, meditation, or whatever else helps you deal with stress. Now is the time to absolutely baby yourself!

Read around on the site and ask lots of questions. We've all been there, for sure. My fourth "clotiversary" is coming up in January, and I can tell you that it does definitely get better, just almost never as fast as we'd like. Hang in there! Keep us posted!

I had my PE's and DVT 2 years this coming Christmas Eve. What a terrible time to go into the ER and then the hospital. For a long time it was 2 steps forward and one step back. I was very angry. I had been so active for my age. But you can do it, just takes time and not pushing so hard in the beginning.

God bless you and don't be so hard on yourself.

Thanks for all your insight. Right now, I'm trying to figure out how I developed these clots. When I went to the urgent care Dr., he gave this antibiotic that was sulfur based. He thought that I might have an infection in my ankle (because of swelling). Well, right after I took the first pill, I became very sick and developed a fever. Then the next day, my ankle was blood-red and purple. I think this is when the clots moved up my leg and into my lungs. However, I'm not sure. The hematologist is conducting some tests to determine if this condition is genetic in nature. Thanks again for sharing your experiences and advice.

You may be on to something . My mother told me I had a reaction to the Sulfa drug as a child, but Not as an adult.
Just a quick search and I find the drug can effect red/ white blood cells and platelets but also what you described as " my ankle was blood-red and purple. " .--Allergic vasculitis

Definition

Allergic vasculitis is an extreme reaction to a drug, infection, or foreign substance that leads to inflammation and damage to blood vessels of the skin.

Worth checking out and asking your Doc.

That your condition was misdiagnosed, and time was lost, is unfortunately common. A lot of SVT/DVT/PE stories involve the patient being near death before the doctors knew what was going on, or understood the severity of the condition, and those are the stories from the people who survived. It was the undiagnosed and the untreated who had most of the life-ending outcomes.

According to the Merck Manual, there is a 95% survival for those patients who make it to diagnosis and treatment, with the odds becoming vastly more favorable within the first hours.
http://www.merckmanuals.com/professional/pulmonary_disorders/pulmonary_embolism/pulmonary_embolism.html

The passage of a few days in anticoagulation treatment brings the danger of the PE down to about that of crossing the street. Still, we all got blindsided with fear, and the fear usually far outlasts the actual danger. That is the nature of coming to grips with what could have been.

Everyone's back-to-work experience is different. Many, like you, are fine to go back after a week or two. Others may require a longer time off, or limited duties when they do return. If nothing else, if you can return to normal routines, it does good to have your mind occupied so that you can proceed with recovery without having to think about it so much.

Thanks for your comments. You know, the more I read the posts, the more I find that many people who have this condition, were in fairly good shape and quite athletic as well. Interesting?


indwen

According to information gathered at airhealth.org, there is actually a strong correlation between elite-level distance athletics and venous thrombotic events (VTEs). 85% of those who get DVTs related to air travel are such athletes.
http://airhealth.org/athletes.html
http://www.active.com/articles/hidden-danger-dvt-in-endurance-athletes
http://www.americanrunning.org/w/article/revisiting-dvt-assessing-athlete-risk-1

Some, but not enough, of this information gets around the athletic community; through publications such as Runner's World, through various online sources, and other means. Since DVT events are relatively rare compared to the frequency of other injuries, it may get only occasional notice through the grapevine. Only after "the big one" came did I have recollection of earlier symptoms, come and gone, that could have been SVTs or DVTs that resolved safely. When I got the year-out follow-up leg scan, I asked the tech if she could do both the affected and "unaffected" leg, the latter of which did show some chronic signs of previous clots that never became dangerous.

More2be,

Wow, I never knew that. During the late 80s and through the 90s, I was running up to twenty miles a day. And you know, In 1992, I started having these horrible chest pains. I had them for about a month and ended up seeing a heart doctor, however, my lungs were never checked. I suppose there could have been a chance that I had embolisms in my lungs way back then and didn't even know it. Are you still running? Before this current event, I was only running about three miles every other day. My serious running days are long gone.

Indwen