I also had a massive DVT and PE last February which was only diagnosed after a full body CT scan as I had done all the other heart tests due to having difficulty breathing etc., unfortunately for me a doctor put in an IVC filter which basically destroyed my life as I once knew it.
Not only did it rupture in the vein but when it removed it tore up my IVC and now I have stenosis of the vena cava, not to get into my issues too deep I suffered 3 more bad PE episodes during this period one actually stopped my heart, thankfully paramedics were able to save me, but I have been on Coumadin since and figure it will be for life even though I don’t have the clotting issues.
Coumadin is a pain having to get regular testing but you might want to find out with the drug you are taking what happens if you were to need immediate surgery as Coumadin can be reversed but others cannot, leading to some issues. Thankfully now my lungs are good even after the 4 PE’s no damage so that is great news, what caused my original DVT it is thought it was an unloader knee brace that was too tight on the vein at the back of my knee. (I had a VQ Profusion scan last week and got the all clear on my lungs)
Today I ride on my bike, swim, gym and a little running but I cannot achieve anywhere near I used to due to the lack of blood return to the heart through the vena cava, but after being fit all my life (I am now 56) it was something I fought back from not being able to walk across the hospital room without being totally fatigued to at least something that resembles being fit and active again.
Hang in there sometimes it can be a long road getting back from this yes you feel like everything is a struggle but you will get there with time, keep your blood thin but do have your blood tested when off blood thinners to make sure you don’t have any factors to make clots. Get a scan in a couple of months and you will be happy I am sure to see your lungs will be clear and good to go. Also get a follow up Venus doppler on your legs make sure the old clots have gone or at least are now attached to the walls of the vein which should not cause any more issues.
One of the doctors I saw at UCLA said that dehydration is a big factor in causing blood clots and he said athletes suffer a lot due to the slow heart rates and dehydration. So sometimes we can’t win for loosing! If you want any further information just send me an e mail, I will be glad to give you what I have learnt during this journey. Cheers LA Rob