I second the question! I was in the hospital 2 nights ago, diagnosed with PE. Now I'm home resting until I see the Dr. on Monday. What then? When will I do normal things?

Mine was over a month ago and I feel fine now. I was in the hospital for almost a week (not eating much) so it took a few weeks to get my strength back. My lung was sore for much longer and I still get pains from time to time. I hope both of your recoveries go well!

Why do we still get pain, because the lung is healing?

My lung was so tramatized by the spasming when I had my clot that I'm not too surprised by how long the pain continued. It felt almost like a sore muscle and would hurt when I took a deep breath or coughed or yawned. I was actually coughing up blood for a few weeks after which was really freaking me out. But everything has gotten much better. Take care.

My PE was two months ago. I have some chest pain and fatigue still. I also feel like I always need to take a deep breath. My oxygen levels are always at 100% when checked at the md's office, so I'm not sure why that is. It scares me because it's similar to how I felt prior to having the PE. Plus, it's been kind of cold here in WI this week and I notice that my lungs burn from being outside. Do any of you have similar stuff? I thought I'd feel better by now. Is it normal that it's taking this long to recover? I had a multiple clots in both lungs, so logic tells me- yes it takes that long. But there's still this doubt.

Since you had multiple clots, I am concerned too. Have you been to the pulmonary doctor or gp? It would be nice to get a follow up CT wouldn't it? Just to put your mind at ease. General practitioners are not real good with PE's. If I were you I would check into it, you and I both know what weather is around the corner for us. L et us know.

Actually, I had another CT scan and echocardiogram last week and met with the cardiologist (he treated me for the PE while in the hospital) to go over the results yesterday and everything came back clean and perfect- my lungs look healthy (no new clots or apparent damage) and my heart recovered from the damage it suffered from the clots. I am so incredibly fortunate. I will still take warfarin until March just as a precautionary measure. The doc thinks the lung discomfort is part of the recovery and part of my anxiety, although he said if it continues for another couple of months, he'd order some lung function tests. I agree on the anxiety part. I now feel such a sense of relief. I hope everyone in this forum can get to experience that relief.

My INR has never been above 2 once since coming home from the hospital, which was such a source of stress for me. I was always feeling like I wasn't protected from the clots. The stress from that plus the stress of just trying to process the effects that this illness has had on me physically, emotionally and mentally has left me exhausted, anxious and a bit of a wreck. It is clear that the PEs should have killed me. So youd think that I would have had this new zest for life. But, I got home from the hospital and I found that I didnt know how to live anymore at all. No one really prepares you for living your life after the hospital.

This is probably apparent to many folks, but it wasnt to me, and that is that recovery is not just about your physical body but about your mind and your spirit too. I think the mind and spirit get neglected in all this, at least in my case. This has been a tremendous lesson for me. I thought I knew myself and understood how life works. The fact is that after this illness, I realized that I didnt know ANYTHING and I was uncertain about EVERYTHING. Im trying to use this experience to do some self-examination and re-evaluate how I handle stress and how I take care of my emotional state.

Sorry for going on so long. Ive completely lived in my head over the last couple of months and felt so isolated, so for the first time, I feel that I can actually just express myself and let some of it go. This forum is wonderful.

I dont know when things will be back to normal. I'm not your average case but I am still not back to normal and its been over 3 months. I still can't workout without filling exhausted and out of breath and like im going to pass out.

RMB thank you for everything you wrote. I am in the same boat you are. I am just past 3 months since the PE's and I too also just got a CT scan that revealed a clean bill of health. But everything you said about recovering mentally, YES!!! Thank you. I feel the same way but you just say it much better and just knowing I'm not alone really does lessen my stress. I know I have a long road and that my life will never be the same but I'm so thankful with all that I've learned. I would also like to add that I've taken life for granted in the past and now with a birthday just past, instead of complaining about how old I'm getting, no kids yet, no ring (after being in an 8 year relationship)..., etc., I am so grateful to be alive, so grateful I got a second chance. I've learned life, my family and friends are so precious. So today I say this, because I feel that most of the time, but sometimes, actually more often than not, I still get angry and upset and anxiety ridden, thinking "why me?" It's back and forth and I'm still trying to control it. It has gotten better but some days are worse than others.

And MSM, stay positive. It seems everyone has different levels of severity and everyone heals differently. Remember try to stay focused on recovery and I promise you will feel better soon! Keep your head up!

I am so happy I found this forum. I was diagnosed with 10 PEs in my lungs in Sept. and in the hospital. I am a very (otherwise) healthy 29 yr. old - the clots were from the NuvaRing. I was feeling so much better - shortness of breath better and anxiety better and then two days ago I started to feel that anxious doom feeling and my chest is tight - is this normal? I called my doctor - but don't know when I will be able to get in to get another CT scan.

I guess I thought it would be gone by now but now I am worried that its somehow back.

My INR has been 2.0 for two straight months and then last friday it was 1.7 - can I develop something new with a 1.7?

Thank you!

Hi, and welcome! Yes, my PE - bunches in both lungs - was from contraceptive too, Seasonique, started 9 months before. I'm sorry it happened to you too. It was in Oct. and I was feeling better too, and now not. Just went to the doc yesterday, in fact, and had all kinds of tests done again, and there's nothing new. I'm wondering if it isn't actually anxiety. That I never noticed these symptoms when I was anxious before? Or that in some weird PTSD my anxiety mimics PE now?? I don't know.

Also, no I don't think you would get new clots at 1.7. I think that's still good. ANd, I dropped to 1.25 last week with no clots. My doc says that since the contraceptives almost certainly caused the clots, and I'm now off them, there should be no clots.

Me personally, I made an appt. with a hematologists for Jan. so that I can feel more sure about these questions.

If you feel symptoms, of course, you could always go to the ER and they will most certainly do a scan, don't you think? Not an attractive option, but I think many of us have done it -- I did, 4 days out of the hospital.

Tell us what happens!

hi goldenSD! welcome to the site. Some great advice there from BeckyNew too, not so much a newby anymore you're a pro now girl!!! haha.

yep, I would agree with Becky 100%, go see a haematologist if you have any questions, they are deffinately the best people to see and ask as they specialise in that sort of thing. mine was great.

And yeah, although they try and get our INRs between 2 and 3, 1.7 is still a lot higher than a 'normal' person so you should be ok. It is very very rare to develop a new PE while on Warfarin, even if your INR dips that low. Mine once dipped to 1.15 and I was told to take the clexane (lovenox) injections for a few days while I was given a higher loading does of warfarin again. So if they are concerned that its dropping too low I'm sure they'd do the same for you. just listen to your body. I had my PE similar time to you and get twinges of pain because of the lung repairing, But I recon I'd know if it was another PE!

Im glad you found this forum too! It has had a positive impact on my recovery and I hope it does for you as well.

I had massive PEs in both lungs (20 years of birth control pill use apparently caught up with me)and felt good when I got out of the hospital and then within a few weeks, I had chest pains, shortness of breath, etc. Now that Im three months out from the PE, I see that it was mostly anxiety and I think my lungs healing, actually. And my INR is always low and it would freak me out. Now I just try to ride the wave and not get too freaked out. But it took a few months to get to that state of mind. Certainly, if I feel like Im having another PE, Im going to the ER and I dont care if they think Im wacky or not.

Are you guys as amazed as I am at how most of us have had identical experiences post PE? If I didnt have to work for a living, I would love to start some kind of post PE wellness organization where once you check out of the hospital, theres a place to go where folks prepare you for mental and emotional recovery. The reality sets in after the hospital and it really messes with your head.

I'm the anxiety queen! Wow, I was dong really good there for a few weeks, for some reason I don't know if it's a bug or not, but am feeling sick this morning again, they did increase my coumadin to 10mg for three days, today will be day 3 and then 7.5mg, for the weekend, test again Monday, since it was still at 1.67. However, I've been around a lot of sick people so I can't tell if it's a bug or anxiety! Even the simple things can trigger my anxiety! It isn't fun! At least we have each other!