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.
Hi All,
Been a while since I've chimed in so wanted to update you on my 6mo appts. I did see my Pulmonologist and Hemotologist. Got the all clear with a CT scan of the lung, no more clot and no lung damage. (Although my breathing isn't quite the same as before the PE in March...maybe in time...). On the down side, My doc is "leaning" towards me being a lifer on Warfarin. Not sure how I'm feeling about that. I guess I'll take it for another 6mo and in the mean time think over my options. He is allowing me to have a home monitoring system to check my INR. That will probably happen in the next month. Over the next months I will consider my options: 1) lifer on Warfarin, 2) lifer on Xarelto, or 3) asprin everyday with Lovenox when I travel. But he leans towards Warfarin for life. He said I could take Xarelto, but since I do pretty good on Warfarin to stick with it. I won't be as protected with aspirin and they really don't know why I had a clot to begin with. The other subject that is still in process is that a cardiologist has been looking at my heart and found a few things that are most likely related to exercise but need further investigation: 1) mild hypertrophy of the left ventricle 2) moderate diastolic dysfunction, 3) some mild valve leaks. Is there any other endurance athletes out there that might have found these things with their heart or "athletes" heart? Well, that is all for now.
Thanks for being there.
Been a while since I've chimed in so wanted to update you on my 6mo appts. I did see my Pulmonologist and Hemotologist. Got the all clear with a CT scan of the lung, no more clot and no lung damage. (Although my breathing isn't quite the same as before the PE in March...maybe in time...). On the down side, My doc is "leaning" towards me being a lifer on Warfarin. Not sure how I'm feeling about that. I guess I'll take it for another 6mo and in the mean time think over my options. He is allowing me to have a home monitoring system to check my INR. That will probably happen in the next month. Over the next months I will consider my options: 1) lifer on Warfarin, 2) lifer on Xarelto, or 3) asprin everyday with Lovenox when I travel. But he leans towards Warfarin for life. He said I could take Xarelto, but since I do pretty good on Warfarin to stick with it. I won't be as protected with aspirin and they really don't know why I had a clot to begin with. The other subject that is still in process is that a cardiologist has been looking at my heart and found a few things that are most likely related to exercise but need further investigation: 1) mild hypertrophy of the left ventricle 2) moderate diastolic dysfunction, 3) some mild valve leaks. Is there any other endurance athletes out there that might have found these things with their heart or "athletes" heart? Well, that is all for now.
Thanks for being there.
Good to hear you've got to the 6 months mark. I had a different opinion from my expert, who said its 6 months down the line, time to stop. Like yours they were unprovoked. There has been a few threads recently about the pros & cons of stopping after 6 months, so have a quick scan of those, if you've not already done it.
When I had my original set of PEs, I had some heart valve leakage and some strain (can't remember exactly what ...) although the docs were not too worried, saying it wasn't too abnormal. Yesterday went back for another scan after the recurrence and I got a "see you for another one in January" from the nurse, so I'm not necessarily expecting an A+ when I get to see the consultant. Personally, my lungs feel worse than my heart and I've still not had the drive to cycle up hope mountain (a short, steep climb nearby) although i'm doing a ~25 mile flat, round trip commute ~ 3 times a week. I know I should be grateful that I'm able to do the commute, but it would be great to feel that bit better. Don't know what type of endurance you're into, but when I re-started swimming, my heart felt like one of those looney tune cartoons where you see the heart coming out of the rib cage (and that was after only a couple of lengths). Off to see a vascular guy at the end of November, so we'll see if they add anything. Couple of interesting blogs which I found about tri/cyclists:
http://www.cyclechat.net/threads/gws-colinj-dvt-pulmonary-embolism.109180/page-7
http://freybird.blogspot.co.uk/2009/01/deep-vein-thrombosis-for-cyclist.html
The first one starts one page seven and continues ...
Another place to check out is
http://clot-buster-triathlete.blogspot.co.uk/
He, and his team, do a ton of stuff with Stop the Clot. May be worth getting in contact.
From what I've seen, there isn't any real reason not to get active again (obviously doc permitting ...). One thing I got was a "dog tag" with my details on (hospital number, dob, warfarin, ...) so if I do have an accident on the bike, I've got a "go straight to hospital" card. It isn't hidden in a wallet. Another thing to take seriously is dehydration. In the summer before I was diagnosed, I was feeling rubbish, but whenever I did drag myself onto the bike, I'd feel really dehydrated quite quickly. Don't know whether this was causal/correlated with the PEs, but make sure you drink enough.
So glad you are getting back into the swing of things with exercise. I know at first it can be worrisome, it was for me, but I slowly got myself back to running and riding at moderate distances. My pace in running is slower since before the PE, but maybe that will improve. Glad things are going so well for you now that you are off blood thinners. I also wear a wristband with my name etc. and it also says Warfarin on it incase I fall. For anyone that needs one of these, I got mine from roadid.com. Biking was a little more worrisome for me than running as a fall would be more problematic, but the more I got out there, the more comfortable I started to feel about it. I try to stay on bike paths if I can or less busy roads, or bike with friends. Again, glad you are back at it!
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