I am now 6 and half months since diagnosis. In my case, I had strange symptoms (abdominal pain, fever, fatigue and even a strange issue with my bowels) and the doctors at the ER could not piece it all together. I was diagnosed a few weeks later when I showed at the ER with EXTREME SOB and O2 sat of 81. At first, they thought it was pneumonia but the CT scan showed massive, bilateral PEs with one very large embolus.

I'm temporarily off Coumadin until I can go for the genetic testing next week. In my case, there was no risk factor for a PE and there might me a genetic connection as my dad died from a PE. However, in his case, he had several risk factors.

I'm also having another CT scan done in a few months to see if all the PEs have dissolved. I've seen on these boards that, even if the clots dissolved, there are still symptoms for several months after diagnosis.

They generally keep you on warfarin for 6 months because by the 6 month mark, most clots are resolved or gone completely. So it doesn't really pay to re scan , unless there's some specific reason a doc wants to rescan you. For some people their clots are so large or they had some heart issues that they will sometimes do a repeat scan.

Like it's been said, generally it is a 6 month cause for "first time offenders". I would take as them not wanting to rescan you as a good sign that although you had it it was not as serious as it could have been.

I was rescanned because I was, in the words of my consultant "riddles with clots" so it became prudent to see if they had all resolved properly. Also as rmb said I had shown some heart dysfunction because of the clots as well.

Despite that, mine were also resolved within around 6 months as well despite that little factoid from the consultant. I will probably be a lifer on Warfarin because of the severity despite it being my first offence.

Take it as a good thing and look forward to being healthy again =).

I had SOB (but I also have asthma so I blamed it on that for a long time and my physician also did that) and the last week before I went to the ER chest pain and be exhausted from walking up and down the stairs (I still did a 4 hour bike ride 2 weeks before) but I was walking around with it for at least 2 months.
I went to the ER on Sept 1 (multiple in both lungs, no DVT) and I had another CT scan after 6 months, there was still a little bit left in my left lung. My EKG came back normal last Friday so the Dr is giving me a VQ scan next week to be sure everything is gone.

Basically, I was told it takes a long time for the clot to "resolve". And yes, breathing gets easier, you have more energy and you begin to feel "human" again. It can be a long process or a few weeks. In my case, my doctor said there will always be some evidence of the clots in my lungs and he also won't know the total of the damage done to my lungs. I was also left with some pulmonary hypertension.

However, all that said....I can't have a CT scan due to kidney issues, so the doctors can't determine as much as they can for most people.

Diagnosis on Feb 20th when I went to the ER for a breathing treatment for what I thought was a bad asthma attack that didn't respond to the albuterol. Had minor SOB that morning, but by mid-afternoon it was so bad I could barely speak, was gasping for breath after every other word, and there was a tightness in my chest. When the ER doctor didn't hear wheezing in my chest, as one would expect with an asthma attack, she ordered multiple tests, including the CT scan that found the PE. In the last few days I have started having stretches of a couple of hours at a time where I feel almost normal--no SOB, little to no tightness or pain in the chest, and a little bit of energy. Doesn't last long enough, but at least there is improvement. My doctor has told me I'll be on warfarin for a year. No plans for another CT at this time.

I had a pressure in my chest for 4 days straight, wasn't painful just a pressure. I was working out for about two months and thought it was strange how walking up a hill with my son I was out of breath. The day I decided to go to the ER I was working out and a minute into my eliptical work out my heart rate was above 155bpm. I went into ER and was diagnosed with multiple PE's and was told I was lucky I came in. It has been 6 mos since and am on Warfarin for life. My biggest battle is anxiety associated with what happened to me. I joined this group to talk to others who went through PE's cause my wife said thats the only way to be helped, talk to others who went through the same thing as me. Looking forward to meeting others and chatting about this

I had an ache under ribs on left side that turned into severe pain and inability to breathe. Went straight to my doctor who picked up it was a PE quickly phoned the hospital who told her to give me a clexane shot and they would see me first thing in the morning. They did lots of blood tests and scans and concluded I had a PE and gave me warfarin for 6 months. It was only afterwards I remembered falling asleep in my skinny jeans with my legs curled up for a few hours and a strange cramp that wouldn't shift when I woke up. They are pretty sure that DVT caused my PE.

I am 5 months past PE and still have pain breathing deeply and odd aches and twinges. I think things are generally getter better every day with a few setbacks if I catch a cold or the weather is bitter.

My situation was almost identical to yours. SOB and they thought it was upper resp. infection, bronchitis and asthma. Then I went to a pulmonologist and he suspected PE's and set up testing for me but I never made it to the testing date. Wound up in the ER with an O2 saturation of 81 and a heart rate of 106. CT scan showed bilateral PE's with right ventricular strain. Nothing was working so they did the "clot buster" treatment. I still have SOB and sometimes pain and pressure in my chest.

They say that it takes a long time for the clots to "dry up" and go away. I also had many small clots. I will go in the fall for my second CT Scan to see if the clots are gone and also to check on two spots they found on my right lung. Wednesday I go for a PFT and on May 6th I go for my 3rd ECHO.

All I keep hearing is that it's standard proceedure to be on Warfarin for 6 months or longer.

Funny how one can look back and see lots of indicators to PE but not easy to diagnose, I suppose. In my case, the whole month prediagnosis, I did not feel well and had been to two doctors who did not suspect PE. What muddied the waters was my history of hypersensitivity pneumonitis caused by parrots we kept but which had resolved several years ago. Because of the SOB, my dr. thought HP also and put me on prednisone (which I have read here can sometimes be linked to PE). What got his attention ultimately was an episode of deep mid sternal chest discomfort which lasted 3 hours, got me to his office where he ordered a D-dimer blood test. Of course, it came back positive and I was sent to ER for CAT scan which showed bilateral PE's and DVT in both legs. In the hospital I had heart issues and had to have a pacemaker placed. Genetic testing and cancer markers were negative. Oxygen off and on in hospital but none at home. Following start of anticoagulation therapyy, SAT's were 94% and above most of time. For me, the absolutely worse symptom is the fear and anxiety associated with this illness. I EXPECT to have sudden death from a blood clot and I think that I SHOULD stay on warfarin the rest of my life. Wake up early early very anxious about everything. I am trying to lessn the anxiety by staying as active as I can (albeit I have weak legs and not much energy), lose weight to reduce burden on vessels, and pursue my spiritual life more seriously. And my mother lived to be 100! Oh, well.

The first time I got my PE I was 18. I had been playing in a varsity volleyball tournament and I had no endurance and severe shortness of breath. I didn't think much of it, not even having heard of DVT or PE and I also had a cold, so thought that was the reason for the SOB. My cold turned into the flu (or what I thought was the flu) with congestion, a moderate fever, coughing and tightness in my chest. A few days later, I was feeling better (better enough to go to a job interview) but with a persistent cough, until the following day. I was out with a family friend when she looked at me, said I looked pale (which is hard to do when you're black ;-) ) I passed out, waking up while being put into an ambulance. Turns out I had had a seizure due to a lack of oxygen getting to my brain. The ER doc checked me out, couldn't find anything wrong with me, and I was discharged. I walked across the ER to call my ride, looked up after hanging up the phone, heard my nurse ask if I was OK, before losing consciousness again. The ER doc just happened to be talking to a man who had broken his leg about watching for signs of DVT when he stopped mid-sentence, rolled his chair around to my side of the curtain and told me he'd send me to get checked out for a PE.

I was put on Warfarin for 8 months and was taken off anticoagulant therapy until 2007 (22) when I got another PE due to complications of pregnancy. Knowing the warning signs, I got my mom to drive me to the ER following severe shortness of breath and tunnel vision (nearly passed out) following strenuous physical activity. That time, I was put on Fragmin, followed by 6 months of Warfarin. Since it was probably that the PEs were triggered by hormonal changes, I have been on Fragmin injections during my 3 pregnancies.

My last episode of PEs was in 2011, 3 months after the birth of my daughter. As I was neither pregnant nor on hormonal based birth control, we (my doctor's and I) have no idea what causes my clots. It is delightful to be on life long anticoagulant therapy, being only 28 and having dealt with my condition for 10 years (feel the sarcasm). I'm hoping that we'll be able to find out what causes the PEs and maybe be able to come off the blood thinners.

I am currently breast feeding my 6 month old son, so I'm back on the Fragmin. Any suggestions for medications to ask my doctor about? I've only ever been on Fragmin or Warfarin but I would rather not stick myself every day or have weekly blood tests to monitor dosage.

As for how long it takes to feel normal again, it varies, but by about 2 months the clot(s) should have dissolved and the warfarin shoul dbe continues for at least 6 months to make sure there's no risk of a reoccurrence.

My PE was diagnosed in my family Dr office and confirmed at the ER after an elevated d dimer result and then confirmed as severe bilateral pulmonary arterial clots just past the "y" split and several smaller clots in the lungs by a CT. I just happened to have the appt and went to the Dr that afternoon with a badly swollen ankle that I had purposely immobilized over the weekend. Good fortune because I am stubborn and only had made Dr appt due to wifey insisting due to ankle swelling and pain.

I developed SOB a few hours prior to the appt. so Dr sent me in for the d dimer and CT. Bottom line is I did it to myself because I'd never heard of of a DVT or PEs and I did not elevate nor compress.......only kept leg immobilized on a long car ride and post ride for a few days due to pain In my ankle. What a regret! Now that I have learned so much about this......I know I did it!

I am breathing very well......8 weeks tomorrow post event. I still have significant swelling in my ankle and foot but my lungs feel good. I have lost 46 lbs too.......I am hoping to lose another 65.....It feels good to be getting into shape and I am looking at this as a life changer......for the good.

CT also found a 7mm nodule in my lower left lung that they want to look at via CT again in June. So I will get to know if the clots are resolved and I am happy about that. I can understand folks feeling anxiety when they do not get a follow up scan. But as others have stated the rescan is not really medically needed unless there is a reason for the Dr to suspect there is still an issue or a recurrence.
All my best to you...And everyone here!

Have a great week....

John

Mcd.....I'm on xarelto.....expensive but INR checking is not a part of the regimen on this drug.......it just works. Talk to your Dr about it.....so far so good for me.