Pulmonary Embolism Support Group

I had a feeling of familiarity with this one.
I too got a PE that started with a calf clot, in a "superficial" vein atop of the calf. That was nearly two years ago, but so much progress has been made in educating doctors since then; it may as well have been 20 years ago. I was sent home untreated, with no prescriptions. It took 7 weeks for PE to develop to the point where I had to go to the urgent care, then the ER, then the hospital for 3 days. Dx, acute and massive PE.
On the front end I had no pain, just worsening SOB, especially situational such as climbing the stairs. The recovery was a different story. First night out of the hospital, in the renal area of the back. Over the weekend (all alone with so much time to think about it), it spread badly through the neck and shoulders. Finally I went to the ER, where the ER doc said that shifting pain would be normal "as you recover" and that I was already on a standard treatment plan. Sure enough, in a different place each day, some new mortal pain set in. Each night I had to find a different position in which to sleep. I figured it to be a sign of significant improvement the first day I made it all the way through 24 hours with no such surprises. No pain since.
Others were not so lucky and have had steady or intermittent pain for months or years.
It does take a while to get past feelings of vulnerability, especially where getting enough air is involved. Every progression and every recovery is different. Check with your doctor for guidance. If ever in doubt at an inconvenient hour, return to the ER.
There is a possibility you can be set up with a finger-pinch oxygen monitor, which would at least help you see any trends in your 02 saturation level, which should improve and plateau reasonably close to 100%.

I am ten months out from PE , drs visit yesterday, he put me on an asprin a day and I mentioned pain in my ribs at times and about a month ago pain in the top of my left shoulder that lasted a few hrs. He didnt seem to be concerned and ordered blood test to see if im anemic and for something else. He had talked to a hematologist and they both decided I should be ok but if I do get real short of breath or start having real bad pains get on the phone with him. immediately. I am still somewhat short of breath some days, pain some days, pain in my leg at times but nothing that last or gets worse. My Dr didnt seem to be concerned about intermittment pains from time to time and said it may be that way for quite a while. Everyone seems to be different on healing times. Being only 2 weeks out you have only just began to heal, give yourself time for your body to get over this and take it easy and do what you feel like doing and let the rest go. I have my good days and my bad days and I hope that one day I will get back to normal as can be. You will too. Sorry you had to find this place but this is one heck of a great group of people who will help you thru this. Has been great for me to have found this site and has helped me thru this since Drs dont seem to tell me much or what to expect. They dont know themself. As long as you are on warfarin you should be protected and not have any more problems as long as you are in range usually 2.0-3.0. All you can do is take it one day at a time.

Do you go to a ATU clinic? Where they monitor your coumadin levels? This is the best place to get advice on blood clots, because they deal with them on a daily basis. They are the real experts. I know this because I was just released from the ER with a diagnosis of possible reaccuring PE while on Coumadin. WHAT? I"m on Coumadin? My levels are good! Really! I head to the ATU clinic for help and answers. Yes, it could be a clot, even on Coumadin. The one that is already in your lungs can no longer hurt you. It will only travel deeper into your lungs and get smaller. ie: cannot kill you, just hurt. It is the other clots that may possibly still be hiding in your veins that have finially decided to break free. Coumadin does not break up the clots, your own body does this over time, it only helps to prevent new clots from forming. I also found out that some people need to have higher Coumadin levels ie: 3-4. Talk to your ATU people. They are really helpful. Hope this helps.