Hi folks,
I was wondering if anyone knows how long it takes to start to feel better after having a PE? I was in the hospital 6 days on lovanox and then coumadin. They said my lung scan looked like a starfall of small clots. We don't know the reason yet... tho some of my clotting factors are high, all of them are not back yet so the doctor won't see me again until they are....about 3 more weeks. Also, they said that sometimes certain cancers can cause this to happen. They did blood tests called Tumor markers and so far 2 of them are elevated.... not too much so ( I think ) but, again, the hematologist/oncologist visit is 3 weeks away. I was released yesterday...and really didn't feel too bad. Today however.... I am feeling a little chest pain and the exhaustion feels like it's coming back again (my only symptom originally). So, to say the least, I am a little freaked out. I had sinus surgery a few days before the PE was diagnosed , but all the docs say that type of surgery won't cause PE's.??? I am now taking coumadin for a minimum of 6 months and will need my blood checked weekly for awhile..then twice a month after that. I am so scared... I can't get this knot outta my gut! I feel very lucky to be alive, since I waited soooo long before going to the ER, but after 3 calls to the doc and him brushing me off each time...I finally went with my heart....that something just wasn't right. Sorry for all the jumping around.... but, do you guys think that it is normal to feel good somedays....and exhausted the next? Any help would be appreciated greatly! This place is a Godsend. Thanks, Robin

Hey Robin,

Sorry - looks like you posted a while ago and no one replied. How are you doing?

I was diagnosed with a PE in mid-March. Haven't seen the scan, but they all say "it was very big, involving both lungs and major arteries." I was on heparin in the hospital, had to do the lovenox at home for five days, and am now on coumadin. I'm still feeling very "heavy chested" - like a 10-pound bowling ball instead of a 15-pounder. My neighbor is a nurse (at the hospital I was in, even!) and she said it takes quite a while. Even when the clots start dissolving, there's still lung damage that has to be repaired.

I think it's very normal to feel good one day and crappy the next. I felt great today - walked for an hour - and I'm sure I'll pay for it tomorrow. You just have to take it as it comes and be thankful you're alive. Maybe one reason not a lot of people have replied is because not a lot of people, umm, make it through this. I don't want to scare you more, but a PE is incredibly serious, and I have gotten the impression that the survival rate is fairly low, at least during the onset. People like us, we're OK, since we're on treatment. So don't be scared - like THAT'S easy - but just keep doing what you're doing!

Let me know what you found out with your blood tests. I was on BCPs, so they're pretty sure that's the cause of mine (can't WAIT for menopause - they say no hormone therapy EVER AGAIN - bleh!)

Leslie.
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Hi Robin-
I am new to this site-
I have had 6 PE, died 3 times, and am still here.
I have had multiple DVT, both legs.
I can not take Coumadin or Heparin due to some serious reactions, and other problems caused from them that put my life in danger.
I only take aspirin and Nattokinase, which is the all natural form of Plavix.
I have an Inferior Vena Cava filter in place, that was inserted in emergency in July 1991.
I have had these problems since being on birth control pills for only 6 months, 35+ years ago.
I can tell you that it will take time, till you feel better. It all depends on the size of the clot, and how your body absorbs it.
I feel like I went through medical school with all I have been through in my life. I have learned so much from my disorder. Try not to think about it as getting depressed doesn't help with your condition.