Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
OK, here's the deal: suffered a massive, bilateral PE two weeks ago, with lots of clots in both lungs, including at least one very large one. After 1 very scary night and morning where doctors were considering using clot busters as my heart was affected. Finally, after heart sonogram, cardiologist decided that, though the right ventricle was enlarged, I would be ok.
Doctors ran tons of tests to identify WHY I ended with this massive PE. No DVT, no identified risk factor. Dad died of PE, but he was 12 years older and had TONS of medical issues I do not have. They did identify a possible Protein C defficiency, will know for sure in November when I go for my check up.
My question is: anyone else had a PE come from no where?
Doctors ran tons of tests to identify WHY I ended with this massive PE. No DVT, no identified risk factor. Dad died of PE, but he was 12 years older and had TONS of medical issues I do not have. They did identify a possible Protein C defficiency, will know for sure in November when I go for my check up.
My question is: anyone else had a PE come from no where?
It's been two weeks, still no energy, still out of breath and reading that some people only go back after 3 months. This is all very confusing.
This is frustrating and scary. But taking one day at a time.
But in all honestly, all we can do is take it one day at a time. I am currently working in the day and a student at night and considering dropping my fall semester. We need to remember that health is our priority. Baby steps.
They are in fact testing me for the Factor V Lieden, as they found as I am low in Protein C. I'll know more in November, when I go in for my follow-up. So far, the Protein C deficiency is they only thing they found: no DVT, no cancer, no infection, etc.
Doctor ordered A LOT of blood tests, and some had to be sent to Montreal for results, hence the reason the results were not all in when I was discharged.
This is all very scary as my dad died from PE, 15 years ago.
I've clotted three times and had all the genetic tests three times now. I'm negative for everything, which puts me into the "idiopathic" category with you. They told me at the hospital after my PEs that I might just have something that they can't test for yet. I mean, most of the blood clotting tests we do have are pretty new. Most weren't even around 20 years ago and we discover new things every day. You may find out or you might now. Many of us repeat clotters don't really know why we clot.
Recovery is hard to predict. A lot of doctors really consider clotting to be an acute problem. They find the clots and they treat it and they don't really know what happens after that. Some docs will tell you that you'll be fine in a week or two, but I've rarely seen that happen on these boards.
I would say that the acute phase of my recovery probably took around 11 months. I mean, I was working during that time. I went back to work four days out of the hospital. BUT, I was on a reduced schedule (only four hours at first) and it took about five months to work back up to full-time again. I did have to take some days off when I just got too tired.
Really, there isn't much you can do to hasten recovery. You take your meds and make sure your INR gets into range. Other than that, you just wait for your body to dissolve the clots and heal. Some folks push it harder and some folks don't. It really depends on what you can do and what you can't. There's no medical reason not to do stuff (you won't make anything worse) but you might just not be up to it for a while.
For me, I was actually worse off at four weeks out than I was at diagnosis. I had been pushing myself too hard to get back to "normal" and suddenly got hit with a wall of exhaustion and some pain. My doctor gently slapped me on the wrist and told me to take it a little slower. Which I did ...
Sometimes you just have to do it to find out if you can. But, yeah, for a while it is definitely confusing, frustrating, and exhausting.
When you go in for your appointment, be sure to take in a written list of questions you want answered. Also, write down what they tell you. It is much easier than trying to remember everything. Also, there's nothing more annoying than leaving an appointment and realizing you forgot to ask THE question. It's easier to feel comfortable with everything if you get your questions answered to your satisfaction when you are talking with your doc.
Hang in there! Keep us posted on how you are doing!
From some doctors in the hospital, I got the impression recovery would be long, but from others, got the impression that, once the emergency over, it would be a piece of cake.
I sure am hoping for something in between: I'm a single mom of a 16 year old and 21 year with Pervasive Development Disorder and sole care-giver for mother-in-law who is herself in recovery from pacemaker surgery and is mobility impaired and has some autonomic issues. Not used to being the one in need of help!!