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 was diagnosed in July 2009 with multiple bilateral PEs. Never found a DVT despite lower and upper body USs, never found a genetic clotting cause with a hematologist.
My symptoms were that I was short of breath, starting during exercise then progressing to feeling it just sitting around. Finally pain. On warfarin for 6 months, went off Jan 1. I've had 3 D dimers as part of the post treatment protocol, all have been normal (jan. 11, jan. 25 and feb. 8.)
My lungs have never been the same though. I often have tightness, and an inability to get a full breath. This was true even on warfarin. The pulmonologist was always troubled by this, but I think everyone has such different symptoms.
I just wanted to get off warfarin so badly, I wasn't at all anxious about what would happen. the D dimer tests helped too, cuz I knew my symptoms were not the result of current clotting.
Now, in two of my last 3 workouts (swimming) I've been short of breath. I can complete the workout, but the shortness is out of proportion to activity, and it's starting to freak me out a little. I don't know if the anxiety is just making it worse, or maybe I have clots again, or... who knows. My every day breathing is OK, a little hard to get a full breath, but nothing out of the "ordinary" for me.
I want the anxiety to end, but I am afraid to go to the hospital, because I don't want to be admitted again, and I don't want to be on warfarin for life. My wife is adamant that I won't be riding my bike, or skiing, or snowboarding, or any of the outdoorsy things I do, etc on warfarin, so I'll become a shut in, basically, at age 43. I know people here do some of those things, but I'm not sure that would work for me, since my wife trotted out the "think of the people that have to care for you if something goes wrong" argument.
Guess this was more of a vent, than anything else. Not really sure what to do, or at what point to call the doc, or got to the ER.....
Chris
My symptoms were that I was short of breath, starting during exercise then progressing to feeling it just sitting around. Finally pain. On warfarin for 6 months, went off Jan 1. I've had 3 D dimers as part of the post treatment protocol, all have been normal (jan. 11, jan. 25 and feb. 8.)
My lungs have never been the same though. I often have tightness, and an inability to get a full breath. This was true even on warfarin. The pulmonologist was always troubled by this, but I think everyone has such different symptoms.
I just wanted to get off warfarin so badly, I wasn't at all anxious about what would happen. the D dimer tests helped too, cuz I knew my symptoms were not the result of current clotting.
Now, in two of my last 3 workouts (swimming) I've been short of breath. I can complete the workout, but the shortness is out of proportion to activity, and it's starting to freak me out a little. I don't know if the anxiety is just making it worse, or maybe I have clots again, or... who knows. My every day breathing is OK, a little hard to get a full breath, but nothing out of the "ordinary" for me.
I want the anxiety to end, but I am afraid to go to the hospital, because I don't want to be admitted again, and I don't want to be on warfarin for life. My wife is adamant that I won't be riding my bike, or skiing, or snowboarding, or any of the outdoorsy things I do, etc on warfarin, so I'll become a shut in, basically, at age 43. I know people here do some of those things, but I'm not sure that would work for me, since my wife trotted out the "think of the people that have to care for you if something goes wrong" argument.
Guess this was more of a vent, than anything else. Not really sure what to do, or at what point to call the doc, or got to the ER.....
Chris
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Look at what my best friend did with my picture!
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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 am on warfarin for life and yeah, there are some things you may need to re-think if you ever have to be on it for life. But I ride my bike. I don't do anything nuts. I just am a little more aware of being careful. But usually, I don't think about it. I wear a medical alert bracelet so that if I get hurt, the EMTs know I'm on warfarin. I wear a helmet. Really, you can get in a car accident and get hurt, so what do you do, not drive your car? I'm not saying you can go back to all the risky sports you used to do, but you do end up making more calculated risks. You don't become a shut in; you just adjust your actvities.
I think the further out you get from your PE, the more at ease you become with your thoughts and the anxiety and the unknown.
But rmb is totally right about the anxiety. I was totally blindsided by the anxiety I had after being diagnosed with my PEs (and I've had two DVTs before--I thought it would be old hat!). The problem is that recovering from PEs feels a lot like having a PE in the first place. It also feels like the symptoms for a heart attack...and the symptoms for all sorts of other lovely stuff. You might be healing, but it is very easy to think that something is going wrong at the same time...l think we've probably all done that a time or two. And, yeah, anxiety makes everything worse.
I'm still learning about PEs, but I know with my first DVT it took about two years for my leg to feel completely normal again. I only took warfarin for the first six months of that. Even though you are off the warfarin, your body is still healing and will continue to do so for a while. It is possible you will come back to 100% but it may take time.
I'm also a big fan of the medical alert bracelet, just as a safety precaution.
You don't have to become a shut-in, even if you do wind up on warfarin for life. You wear a helmet when you bike, take up cross-country skiing instead of downhill, and so on. You don't have to stop everything, maybe just modify a bit so your wife doesn't panic and so you don't wind up knawing off the wallpaper to stay entertained.
Hang in there!
When in doubt call your doc. That's been my motto.
It does get better. My breathing has improved, i'm back to my normal active life with much less of the symptoms. it's taken awhile, but slowly it's less of a worry in my mind that i'll have a repeat PE.
If you're seriously concerned about it..and the pain is a great worry, as your doctor, get a ctscan for peace of mine. or maybe counseling to work through your anxiety will help. It's not the end of the world to be back on warfarin if it saves your life. Good luck to you.