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'm a 57 year-old who attempted my first Ironman Triathlon last August. Though I was well-trained, I finished the swim and bike but after 13.1 miles of the run I had nothing left and dropped out (it was pouring rain and a really tough course). Nine days later I went to the ER thinking I was having a heart attack, but it turned out I had acute pancreatitis, a blood clot in my IVC and blood clots in my lungs. I was prescribed Xarelto for 6 months.
I'm gently getting back into my training--biking, swimming or running an hour a day. I have 40 days left on the Xarelto and I'm terrified of going off. I can't find anything in google searches on how to go off other than talking with one's doctor (which I will). I'm also thinking about training for a Half Ironman in April.
Does anyone have any experience getting off Xarelto while keeping up a fairly rigorous triathlon training regime? If so, any pointers? I don't want to end up with either pancreatitis or PEs again.
I do have experience with going off of Xarelto.
I went off Xarelto after a year and one month of treatment for a dvt in my right leg. After going off it I developed a PE after a long trip from OK to CA and back with elevation changes.
Back on Xarelto for the rest of my life or until a more cutting edge treatment comes out.
After my dvt in 2015 I worked myself up to about 12k walking steps daily. Now since suffering the PE on 1/1/2017 I feel better and now I'm walking nearly 18k step daily. I hope to continue to increase my workouts and do more than walking but I'll be doing it on Xarelto.
I hope that helps and stay after them.
Thanks,
MLGB
I commend you for working out as hard as you do at 57. It seems like your doctor's know how active you are and if they feel that going off of Xarelto is the right move then listen to them and get on down the road.
When I went off of Xarelto my primary care physician, me and hematologist felt it was time and I was good to go. When I met with my Pulmonogist after the PE on 1/1/17 he/she was quite shocked at the decision that was made.
I have now committed myself to life on Xarelto and have accepted it as something that will be part of me.
During my trip I stopped plenty for movement but I wasn't getting 10k steps a day on travel days so that certainly may have hurt me but I know that elevations affected me too.
Talk to your doctor about a daily aspirin after Xarelto. That my be the answer. Keep me posted on everything and thank you for starting this dialogue.
MLGB