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 everyone--I'm new to this group. I had DVTs in both 03/05 and 02/09, both due to birth control pills. (Note that the second time, I was on a progestin-only pill and got a clot after only five weeks of use.) I've done all the genetic tests and we couldn't find any cause for the clots other than the BC. (I have no family history of clots problems either.) I went off of my warfarin in September and was told by my hematologist that if I got another clot, I would have to be on blood thinners for life. So less than two weeks ago, I wound up in the emergency room with shortness of breath. We did a scan and found multiple PEs in both lungs. This was a total shock, as we have been unable to come up with any precipitating factor to the clots. I have been on *nothing* hormonal, and even my IUD was copper. At this point, I'm a blood thinner "lifer" and we are re-running all my bloodwork to see if we can figure out what happened to cause the clots.
I guess I have a few questions for folks out there who have been dealing with PEs longer than I have.
(1) Did anyone find a clot cause that wasn't either genetic or BC? What was it and how did you figure it out?
(2) What has your recovery from PEs been like? How long did it take and what long-term effects have you had? I've been unable to find much information online about what to expect now that my INR is at a good level and I'm officially "recovering."
(3) Emotionally, I'm reacting much more strongly to the PEs than I did to the DVTs. The diagnosis has really knocked me for a loop and I find myself anxious at odd times, especially bedtime. I have a prescription for Atavan, but I don't want to depend on that crutch for too long. Anyone else have anxiety? How did you deal with it? When did it finally start to fade away?
Thanks everyone!
I guess I have a few questions for folks out there who have been dealing with PEs longer than I have.
(1) Did anyone find a clot cause that wasn't either genetic or BC? What was it and how did you figure it out?
(2) What has your recovery from PEs been like? How long did it take and what long-term effects have you had? I've been unable to find much information online about what to expect now that my INR is at a good level and I'm officially "recovering."
(3) Emotionally, I'm reacting much more strongly to the PEs than I did to the DVTs. The diagnosis has really knocked me for a loop and I find myself anxious at odd times, especially bedtime. I have a prescription for Atavan, but I don't want to depend on that crutch for too long. Anyone else have anxiety? How did you deal with it? When did it finally start to fade away?
Thanks everyone!
Mine were determined to be from BC, but I can relate on the anxiety. My Dr. gave me Xanax after the PE, but then told me to wean off, then I landed back in the hospital so he advised I go back on. I rarely take it, and it's a very low dose. But like you, I don't want it to be a crutch. I don't have much in the way of help, just know that you are not the only one with anxiety.