
Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
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 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!
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!
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!
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.