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.

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Back Again

Lynnedz56
Lynnedz56
I am in a lot of ways getting better. Last week I started Pulmonary Rehab and the therapist concurred that healing takes a LONG time and the pain between my shoulder blades is normal. I'm at a little over six months now and have settled into a routine...INR has been stable for 3 months now, I'm used to the side affects and things are moving along. The last 2 days, however, I really seem to feel like crap. The pain in my back is worse and my heart is back to racing. Anybody else seem to be doing well for an extended period and then backslide somewhat?? I've learned a lot from this group and seem to remember others having this, but it just kind of made me feel crappy to think I'm not as far as I WANT to be.
deleted_user
deleted_user
Yep, I sure did multiple times. I'd get to feeling better for a couple of weeks in a row or even a month once and then bam down slide and back in pain for weeks on end. I still get very exhausted and I had my second round of PE's back in October. Everyday is a little different for me, some days are better than others and then some days are horrible and I feel like I'm back to square one....it's all part of the healing process. About a year after recovery you will start to feel much better and know what is left pain wise that's there to stay, sometimes you fully heal and have no lasting effects and other times you are left with odd pains and shortness of breath years later.

Hang in there, it does get better but the back slides are normal.
Lynnedz56
Lynnedz56
Thanks. I have been staying on this path for a week or so now. Just told them at work that I thought I'd turned a corner and things should be better. Nope, I finally called the doctor yesterday and she told me do NOT push it, take a few days to relax. And start again. The pain is more than I have felt in quite some time, but it's in the back. And back to being short of breath. The weird part is the heart goes from 65 to 100 within 10 feet of getting up and walking to my car. It went to 115 by just putting my shirt on. The doctor is NOT happy. It's that sharp spike that gets them. On Wednesday they will be repeating my Echo to see if the pulmonary hypertension is still there. Praying it was just caused by the PE and will go away.
jmac67
jmac67
you sound like you have had a week like me! i have felt ill all this week - infact as the week has gone on each day i have felt slightly worse. I have been to the dr twice this week - im 7 1/2 months out - really been down this week as i feel that i havent progressed as much as i should have done and start to wonder if there is something else wrong with me that is yet to come to light. When i stopped to think about it - i felt like this a month ago - again after thinking i was back to normal and overdoing it - ive had to slow right down and rest lots this week but i think i am turning that corner again and starting to feel better today. This week i have had chest pains and that feeling in my neck that i keep talking about - they have all come back and yet i hadnt noticed anything for over a month, i am back to using my heatpad (can thoroughly recommend it) and again i hadnt used this for weeks. My problem is that when i feel good i just think i am back to normal and forget to take the time to rest (or just dont have the time to rest more like). One day i will be normal! (was i ever normal??) Good Luck, let me know how you get on. j
Lynnedz56
Lynnedz56
I started to have these heart palpitations that only last very short periods of time and only about twice a week. Today I had one at work and had my watch on that checks heart rate. I realized that my heart rate went from around 70 to 158 for about 15 seconds and came back down. The cardiologist is NOT happy. I see him tomorrow afternoon and am now grounded again. I agree when I started to feel good I know I did too much. You want to back to normal. I have additional medical conditions. And it is just SO frustrating. I also live alone and if I miss any more work and don't get paid I run the risk of losing my apartment and having to move back in with my elderly parents which is something I do NOT want to do. The doctors advise against stress. I left there 4 years ago cause they were driving me nuts and my therapist feared that would literally kill me.
cave76
cave76
jmac said:
***start to wonder if there is something else wrong with me that is yet to come to light.***

"Wondering" about it is wise--- obsessing probably isn't. (grin)

I'm starting to realize that so very little is really known about PEs and their sequalae. It's taken me a while because at first it seemed like it was a very cut and dried condition (albeit scary!). As i delve into in more------ not so.

Keep 'wondering'.
cave76
cave76
jmac said:
***start to wonder if there is something else wrong with me that is yet to come to light.***

"Wondering" about it is wise--- obsessing probably isn't. (grin)

I'm starting to realize that so very little is really known about PEs and their sequalae. It's taken me a while because at first it seemed like it was a very cut and dried condition (albeit scary!). As i delve into in more------ not so.

Keep 'wondering'.
cave76
cave76
jmac said:
***start to wonder if there is something else wrong with me that is yet to come to light.***

"Wondering" about it is wise--- obsessing probably isn't. (grin)

I'm starting to realize that so very little is really known about PEs and their sequalae. It's taken me a while because at first it seemed like it was a very cut and dried condition (albeit scary!). As i delve into in more------ not so.

Keep 'wondering'.
cave76
cave76
jmac said:
***start to wonder if there is something else wrong with me that is yet to come to light.***

"Wondering" about it is wise--- obsessing probably isn't. (grin)

I'm starting to realize that so very little is really known about PEs and their sequalae. It's taken me a while because at first it seemed like it was a very cut and dried condition (albeit scary!). As i delve into in more------ not so.

Keep 'wondering'.
jmac67
jmac67
i made another trip to the dr yesterday to say that i dont think im improving and although i am continually told 'it just takes time' i feel that i should be noticing some improvement - turns out i was feeling yukky for a reason - i have another chest infection - so im back on antibiotics again but i have to go back again on thurs this week as the dr feels that perhaps more needs to be checked - not sure what the 'more' is but i am sure i will find that out in good time. in the meantime the antibiotics are awful - big torpedo things and they taste foul - even with chocolate to get rid of the aftertaste - im such a baby - dont know how i managed to take warfarin for 6 months! lol
cave76
cave76
jmac:

***turns out i was feeling yukky for a reason - i have another chest infection - so im back on antibiotics again but i have to go back again on thurs this week as the dr feels that perhaps more needs to be checked - not sure what the 'more' is but i am sure i will find that out in good time.***

I'm glad you had that checked out. A chest infection and the abx will probably affect your INR.

Let us know what the 'more' is that he wants to check. And good luck.