Yes it is.

We all have a lot to live for and that's one of the magical parts of surviving a PE, I suppose, because you know that a lot better and deeper than most people do.

The anxiety is really common after a PE. If you page through some of these old posts you'll see it's a common thread for most of us. So you have to find ways to combat that. I actually saw a therapist for about 6 weeks I'd say starting a month after my PE. Very helpful in addressing the anxiety. If information on the internet is a trigger for you, then try to avoid reading that stuff until you're in a better place about it.

Do they know why you may have clotted?

They don't know yet. I'll have genetic testing through my hematologist in a few months when I come off coumadin.

It'll be ok. Honestly, there were times where I literally would have to tell myself that over and over again until I started to believe it.

Are you in school right now. Are you trying to get back to your normal routine? Distractions like that can help with the anxiety.

I'm finishing my final three semesters of college right now. It helps but I find myself having what I think are panic attacks at school and work. I take ativan as needed. I've just read that the recurrence rate for pe is higher now, obviously, but also that a quarter of people die from their pe within the first year.

Also, what is the chance of having another pe?

Your risk of getting another PE may depend on why you clotted. Not sure on the specific chances of reclotting. There's all kinds of data on that out there, but it's not consistent with each other so to me, it comes down to how do you know what to believe. And if you don't know what to believe.

I'm not sure about the reference to a quarter of people who had a PE die within the first year. I'd seriously question that. Wouldn't that mean that 25% of the people on this site would be dead at this point?

It sounds like you're selectively reading, maybe not on purpose, but just focusing on the fatality piece. You may want to not do that at this point if it's causing you a lot of anxiety.

I understand your concern and you are young. This is one of the best websites I have found so far for PE. Remember with the internet you have to determine between good and bad data.

My brother has been on coumadin for ten years and has lived a health life with no problems.

"25% of the people with PEs die within the first year." I think this is wrong. I don't know a whole lot about the statistics on PEs and fatalities, however, I do know (from a ton of reading) that once the clot goes into the lungs, it either lodges in there and stays, or it goes to the heart which can cause death. So, if one were to die from the pulmonary embolism, it would be very quick. The majority of clots in the lungs are not life threatening if taken care of promptly. These clots usually get reabsorbed into the body or they simply become enveloped in the arteries and become scar tissue. Or, the clot may stay there and simply become something one has to live with (Pulmonary Hypertension).

I guess I'd have to argue against the 25% number too. I think a lot of people die before clots are diagnosed, but after diagnosis, I think the survival rate shoots up astronomically. Every story I've ever read about someone dying from clots is because they hadn't been diagnosed.

IMHO, the anxiety might be your biggest problem now. It won't kill you, but it can totally take over your life if you let it. Definitely look at some methods of reducing your anxiety. Stop reading the internet, for starters. Find some time to baby yourself.

I think there are a lot of people out there who have had PEs and gone on to lead long lives. A lot of us on this site are in the process of doing so right now. I had my PEs when I was 35, so plenty of years left for me too, I hope.

As for the chance of having another PE, it varies for everyone, depending on why you clotted in the first place and what other issues you might have going on. Everyone wants a concrete answer to that, but there really isn't one.

Hopefully the anxiety will fade for you, but definitely think about a plan for dealing with it. Journaling, therapy, meditation, and so on might all be good options.

Hang in there!

I was diagnosed back in July and still have some anxiety about my condition. I was so happy to find this site because there doesn't seem to be anything out there about recovery. It's all about diagnosis and treatment. I can ask questions here and see that others are experiencing the same thing and it helps put my mind at ease. I agree with the others, give the internet a rest (except for this group!). You may be able to find a PE support group locally, too, which can help. I believe that the world is fundamentally a good place. Things are hard right now, but they will get better. You are young and you'll recover. Stay strong!

I really appreciate all the support. I guess right now I'm worried about throwing more clots. I've had different pains in my lungs and I worry about them. It's just too much to go to the er every time there is pain. My coumadin has been within range only dropping to 1.8 once. I see the doctor this week so hopefully we can clear some stuff up.

Yeah my first few months after my PE, I made a couple of ER visits because of the pain and continued shortness of breath. Know that's some thing so many of us have dealt with so you are not alone in that. I started trying to meditate a bit when I'd get the pain or shortness of breath to calm myself down. Because once I was able to calm my mind, it helped me assess what I was feeling so I could make a judgement call about whether to go to the ER or whether it seemed more likely I was experiencing just residual stuff. Also when you get anxious that just amps up the chest pain and shortness of breath so it really is hard to tell what's what.

Know that pain in your chest or back is a common experience after diagnosis. I didn't have any pain when I had the PE,but started experiencing it after the PE for a couple of months.

It'll be ok. Be open with your doc about what you're experiencing and how you feel. It may help you to just talk to him about it and get some assurance.

" a quarter of people die from their pe within the first year."

Statistics are SO confusing.
That means people with untreated PEs.

I was almost one of those people due to a doctor that should not have a medical license and completely ignored all the signs of my massive PEs.

Now, 3 years later---- even after a second PE after I came off of Coumadin and on Coumadin for life now-----I'm still alive AND reading the Internet----- but selectively! You have to know which articles are truthful, based on science.

Hi,
A lot of good advice has already been given, so here is my tuppence worth. Reading the internet is OK and can be good, but obviously try and go to decent sources: stop the clot, clot connect, ... Forums can be good (here, facebook) but you've sometimes got to have a thick skin, but that's life.

You can live a decent/active life after a PE (see the ClotBuster guy who does marathons/triathlons etc), although everyone is different. Many people stop their anti coag after ~6 months and don't clot again. Some people have a recurrence and are back on anti coags for life. Can't give exact figures, but if you stop and experience a 2nd round of clots, you tend to know what is happening and the risks are significantly less. Risks for unexplained/unprovoked clots are discussed (scientifically) in
http://www.hindawi.com/journals/scientifica/2012/391734/
and while the numbers may seem high (30-50% over a 10 year period, with the usual caveats as described in the paper), it means 50-70% of unprovoked clot people who stop anti coags are just getting on with life after 10 years. Not bad.

As with most of the other people, the 1/4 dying can easily be misinterpreted. Once you're getting treated the risks are much less.