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.
I went back on coumadin in March 2010 due to recurrence of clots after SOB. Breathing returned to normal fairly quickly. About 5 weeks ago I went through a fairly intense course of antibiotics for an infection, and shortly thereafter got the same shortness of breath I got before both PE episodes. Really more like someone was squeezing my lungs slightly, and every now and then felt like I'd have to take a big deep breath, and only sometimes could I accomplish that. No pain, just breathing. Seems to come and go, but never really leaves. Doesn't affect exercise at all (unlike the PEs, which left me gasping when I tried to exercise)
I just monitored it rather than going to the doc/ER for a couple reasons. I had this same SOB back in October last year when I was on thinners the first time, and in November my CT was clear, so it wasn't new clots causing the SOB. Also, I knew my doc's response would be "let's get a CT," and I've had quite enough of those. Even though it would give me an answer.....
Frankly, the hardest part is getting peace of mind. I am constantly worried that it's new clots. As unlikely as that is, reading this board I know it happens. That worry just makes things worse.
Finally relented and saw a nurse practitioner in my pulmonologist's office (he wasn't available). My spirometer test was normal except for some sign of restriction in the small branches. They gave me a bronchodilator treatment, which seemed to help a little. They are sending me for a V/Q Scan tonight, I suppose or hope they will be able to tell if the clots are still there or gone, or whether new ones have formed, but maybe it'll just be we can't tell, and I'll have to have the CT. And I won't have results until next week, so I get to sit and worry some more over the weekend.
Anyway, scared and nervous about the whole thing, wondering what it means if I am still clotting while on coumadin. I had two INR tests right after the breathing issue started, and they were 4 and 3.5, so my head takes that and says "well you're just clotting no matter what they do," and I'll have to maintain some crazy INR that will make all but sitting on the couch unsafe.
I know I should just suck it up, we all have issues, blah blah so no one needs to give me that advice. Just really looking for a place to vent what's going on.
Chris
I just monitored it rather than going to the doc/ER for a couple reasons. I had this same SOB back in October last year when I was on thinners the first time, and in November my CT was clear, so it wasn't new clots causing the SOB. Also, I knew my doc's response would be "let's get a CT," and I've had quite enough of those. Even though it would give me an answer.....
Frankly, the hardest part is getting peace of mind. I am constantly worried that it's new clots. As unlikely as that is, reading this board I know it happens. That worry just makes things worse.
Finally relented and saw a nurse practitioner in my pulmonologist's office (he wasn't available). My spirometer test was normal except for some sign of restriction in the small branches. They gave me a bronchodilator treatment, which seemed to help a little. They are sending me for a V/Q Scan tonight, I suppose or hope they will be able to tell if the clots are still there or gone, or whether new ones have formed, but maybe it'll just be we can't tell, and I'll have to have the CT. And I won't have results until next week, so I get to sit and worry some more over the weekend.
Anyway, scared and nervous about the whole thing, wondering what it means if I am still clotting while on coumadin. I had two INR tests right after the breathing issue started, and they were 4 and 3.5, so my head takes that and says "well you're just clotting no matter what they do," and I'll have to maintain some crazy INR that will make all but sitting on the couch unsafe.
I know I should just suck it up, we all have issues, blah blah so no one needs to give me that advice. Just really looking for a place to vent what's going on.
Chris
-
Look at what my best friend did with my picture!
-
We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
I don't think you should just suck it up. I mean, it's a real concern.
Good luck.
So I'm with ya brother!
Sorry to hear you are going thru a period of uncertainty. I am sure it is frustrating.
I remember you mentioning a while back that you are a triathelete or cyclist. Given that, I am sure you are used to your body performing at very high levels at your command. I think most athletes and very active people have an added level of stress and anxiety when they get even mildly injured, or in your case, a significant illness, because it jeopardizes your ability to do something that you love. What will life be like if I cant run, bike, swim, etc?...I know I have struggled with this.
Looking on the bright side, you are probably very strong and resilient and have the ability to bounce back from whatever it is you have going on right now better than most people. You could just be run down and need some R&R.
Hang in there and chances are you'll be feeling better soon.
Robert
take care,
bec
Just wanted to let you know that you can vent to me any time too! I hope things turn out okay! Best wishes!
Have a followup tomorrow with my pulmonologist, will find out for sure then. If not clots, just need to find out the cause of the SOB. Maybe it's just a remnant of the PEs, that can turn up even months later.
Chris
He does want me to have an US on my leg that recently had the minor surgery, just to be certain, but I guarantee it won't show anything.
Glad not to be blood clots. Breathing seems to be improving slightly every day, hopefully it will just resolve. He has no ideas otherwise, not asthma, not bronchitis....
Chris
I have had bilateral PE and I get occasional panic attacks about wether they have reccurred - even so far as to going to the ER and having the pulmonary scan done. It is always normal. So I am lulled into thinking that as long as my PT/INR is good, then I shouldn't expect any new clots.
Chris