My clots were pretty large, in both lungs, but I had tPA in the ER to bust them up so I didn't need oxygen once I was home. But some people do, depending on the extent of the clotting. I do think too that people lose conditioning during recovery and so I sometimes think that's part of the problem but that's merely my opinion. At 3 months it's still very possible and often likely to still have shortness of breath and pain. If you have pneumonia plus still dealing with recovery, I would imagine breathing is not great. But if your pulse ox is 70-80 even when not sick I think that's worth investigating. I'd ignore the nurses (who cares what they think) and have a talk with your doc, ie why is this still happening, is the doc concerned, when can you expect to no longer need oxygen, do you need a pulmonologist consult, etc. Sometimes they just don't know because they don't have a lot of patients who deal with PE recovery, but I certainly think these are questions you need to ask.

I'm sorry you're going through so much. I agree with rmb, don't pay attention to what the nurses say, and don't let them make you feel like you're not doing a good enough job at recovering, or whatever it is their comments are meant to do. Recovery is going to vary A LOT depending on a person's physical condition before the PE, the extent of their clotting, and their initial treatment of it. So I don't think it's fair for anyone who isn't a doctor to say what is normal or not normal, because PE's can be so different. Some people get a few specks of clot in their lungs, and others have massive clots with infarction and collapsed lungs. Obviously, the recovery is going to be a lot different for those scenarios.

I was in the latter group, but I also had clot busters like rmb did, and I can tell you recovery was really hard even having had that. I didn't need oxygen once I was at home, but I also never got pneumonia afterward either. All you can really do right now is trust your doctor to know what's best for you, and just worry about what his/her opinion is of things. If your oxygen saturation is so low, obviously you need it, but find out from the doctor if there is anything you can do to improve your recovery, like breathing exercises or anything else that might help you. Obviously, you're not going to be feeling very well as long as you have pneumonia, so basically your first thing to worry about is just getting better from that.

Hi and welcome! I had multiple bilateral PEs at the age of 35, although they weren't massive and I didn't wind up having tPA. Even so, the recovery seemed to take ages and you'll definitely be having a hard time with pneumonia stacked on top of it.

I'm with the others... ignore the nurses, since they don't know what's working for YOU personally. There have been plenty of people on these boards who used oxygen on and off for quite a while after their PEs, so I really don't think you're unusual in that respect. But, yes, double-check with your doc about whether he/she is concerned and whether you should get a referral to a pulmonologist. Asking a lot of questions can help you feel more in control of your health and recovery, which can really work wonders when you're stressed.

And yes, the recovery does end, although it ALWAYS takes longer than we want it to. I was feeling decent by six months, although I still had bouts of exhaustion and pain up until 11 months when I pushed myself too hard. I'm almost six years out now (in January) and I've been back to normal for a while now. It will happen for you too! Hang in there and keep us posted!

Hi, I had oxygen when I had my first PE 8 years ago as my sats were well below 80 and my body was struggling. i had a couple of comments from nurses even when I readmitted to hospital because of it . I chose to ignore them as I was given the oxygen on the advice of my cardiologist and figured he was the most qualified to make judgements about my care. I worked with a physiotherapist which was also organised by my cardiologist and got to a point where I didn't need the oxygen any longer.

One thing I have learned is that there is no 'normal' recovery - what happens to you may or may not be similar to how anyone else recovers. My recovery has been rough, but I had chronic undiagnosed blood clots for at least a year before I had a massive PE that was diagnosed so there's no reason to think your experience will be as bad.

Me, I was on oxygen for a couple of weeks after my massive PE and then it was touch and go for a couple months after that. If I had had pneumonia on top of that I definitely would have been back in the hospital and back on oxygen so it's no surprise to me that you need it. The most important thing right now is to protect your body by using the oxygen, and once you've dealt with the pneumonia start looking at what might help improve your oxygenation in the mid to longer term.

In the immediate term, there are some things that can help prevent pneumonia (I realize THAT horse is out of the barn, but they might make it less severe if you can start them now?). Unfortunately I can't remember all five of the steps that were on the poster at the hospital, what I do remember is to use an incentive spirometer each hour (ask your doctor for one if they didn't give one to you), deep breathing then coughing 5 times once an hour, and making sure to sit up and stand up rather than lie down. All of these will help clear the phlegm and other crap out of your lungs.

In the mid to longer term, once you're well enough, I found physiotherapy and pulmonary rehabilitation very helpful.

I have had 4 clots (deep vein thrombosis) the last one being a PE that i almost died from. That was in May and I really pushed myself HARD to get back up to walking a mile a day BEFORE my PE. I was able to work my way back up to a mile by the 3rd month, doing little bit more each week. I am currently on OXYGEN at night. But I am a really restless sleeper and I get so tangled up in the hose going to my nose that when i wake up I have to get out of bed and untwirl about 2 times around my throat and 1 twirl around my upper stomach and my nose piece is usually twisted over to my cheek doing absolutely no good but that is just the way it is. I have been on oxygen now for 5 months. But now I get to get off of the oxygen but I have now been diagnosed with SLEEP APNEA and my sleep center testing which I had twice the 2nd time was WITH a cpap machine and they determined I do NOT need oxygen with this machine so I am just about ready to cash in my oxygen machine in exchange for the cpap one. But just wanted you to know that everybody is different and you can try to push yourself to do the best you can. I still get shortness of breath even when I'm not doing anything and as far as my mile walk, my golden retriever and I we go real slow and doddle around a lot along the way so it's not TOO strenuous. But being able to do my mile walk again is a tremendous improvement to be able to do by 3 months after my PE. I will be on COUMADIN for life now, but it's not the worst thing in the world to me. Good luck with your healing, I wish the best for you! Hang in there!

Thank you to all who responded to my post. You have really inspired me to get more proactive with my recovery and I now have an appointment with a Pulmonolgist and a Hematologist. So hopefully I will get some answers and some help with my recovery. I can tell that you all know what I am going through and though my friends and family try, hearing from those who have experienced this first hand is SOOOO comforting. I hope I can do the same for others some day. I never realized what an effect this type of thing can have on every aspect of your life. Thank you again for all the wonderful advice and encouragement.