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.
D-dimer was good and the Pulmonologist was happy so 6 months after discharge, I am finally off of the coumadin and can use the compression stocking "as needed". I ate my first green salad in half a year, will run this weekend (had to stop because skin got so soft my feet ripped up), and will get back to my basketball group next week.
For all the pain and problems I had on the front end, the past 3-4 months have seemed like I was ahead of the curve (other than terrible issues with coumadin side effects). No test has revealed why I clotted and I hope it remains a mystery with no repeats for the rest of my life.
However, I have read so many stories on this site from lifers and/or about recurrences that I will always stay somewhat scared and will keep visiting here. It is like there is a DVT/PE/Infarction Hotel California, after 6 months you can check out any time you like, but you can never leave!
Such is life, thank you to everyone here for being so receptive to newcomers and for being so willing to share personal details of your experiences. My initial journal will remain up for anyone to read.
For all the pain and problems I had on the front end, the past 3-4 months have seemed like I was ahead of the curve (other than terrible issues with coumadin side effects). No test has revealed why I clotted and I hope it remains a mystery with no repeats for the rest of my life.
However, I have read so many stories on this site from lifers and/or about recurrences that I will always stay somewhat scared and will keep visiting here. It is like there is a DVT/PE/Infarction Hotel California, after 6 months you can check out any time you like, but you can never leave!
Such is life, thank you to everyone here for being so receptive to newcomers and for being so willing to share personal details of your experiences. My initial journal will remain up for anyone to read.
My wish for you is that you don't stay "somewhat scared" and that you eventually don't feel the need to visit us at all (although we welcome updates!), because that means you have moved on and past this experience. I expect you may always be cautious in some situations (long trips, surgery), but I definitely hope this all becomes a distant memory of something that once happened to you... and that you're able to completely escape the Hotel California of clotting!
My experiences with coming off warfarin in the past is that I stopped, and it seemed like a big deal for a while, but then I eventually stopped thinking about it at all.
Bad pun... I know. But I agree with TNT about forgetting about being off of anticoags. I've been off of Warfarin for 3 weeks exactly and it's not really bothered me as much as I thought it would! I have been having some chest pain and even some minor pain in my thigh that I'm keeping an eye on. I also got my blood-labs done today and will hopefully get the results on Monday. I'm still positive that it was caused by the perfect storm only worsened by birth control pills, but it never hurts to be careful. I just keep finding a few minor pains to be difficult, but I don't automatically think of "OHMYGOSHITSANOTHERCLOT" anymore like I used to. It's definitely nice to feel like I'm finally getting my mental healing back on track!
Congrats to you AprilPEshowers. Truly happy for you! I am looking forward to that day in March when I am off the coumadin. I imagine I will have many of the same feelings that you are experiencing. So jealous that you are going for a run! Have fun!
Stephanie
I got my clots from truck driving, so industrial insurance is paying for meds/visits so that part of it isn't an issue. I'm more concerned about a recurrence.
Maybe I'm overly concerned about going through a clot issue again, but I haven't suffered any ill effects from my coumadin journey. I never did change my salad eating habits. The only thing that will jack my level up is Monday after Football, due to the alcohol consumption on Sunday.
Yes, maybe it's like Hotel California but I don't want to have a recurrence either.
2. INRs were very unstable so we had to cut out the greens. Between that and switching labs we were finally able to limit the range of swings, never was very stable but at least was therapeutic.
3. Started running again at 3-4 months when lungs weren't clearing as quickly as we hoped. Asked Pulmonologist and he encouraged me to do it. It felt great but my skin was so soft that my toes and feet would blister and crater no matter what I tried to do to wrap or protect them. I'd heal up and then run some more and then have to stop and heal some more.
3. Will wear compression stocking first time back at basketball just to get sympathy factor and maybe an easy layup, after that it is gone. May wear it this winter letting the dog run the trails at 5 am, Michigan can get a little cold.
4. Everyone's case of PEs is different except for the fact that I wish everyone the best and am confident that you will progress and live happily ever after!