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 know many of you have had scary situations of your own, but I am wondering how many of you might possibly have gone through what I am currently facing.
I am 34 years old, and just experienced my 1st PE accompanied by DVT. It's believed my condition is the result of being on Birth Control, that I was prescribed to prevent severe Vaginal Bleeding. I have struggled with Anemia since a young age, and now this.
It's my understanding that because they are taking me off the Birth Control, I could bleed again... If that happens I may end up having to have an emergency Hysterectomy, and either situation could mean that I could possibly bleed to death. This scares me so much... I do not want to die, and I am so afraid that something else bad is going to happen.
I am struggling to come to terms with all the information that's been given to me, I feel so afraid.
I am 34 years old, and just experienced my 1st PE accompanied by DVT. It's believed my condition is the result of being on Birth Control, that I was prescribed to prevent severe Vaginal Bleeding. I have struggled with Anemia since a young age, and now this.
It's my understanding that because they are taking me off the Birth Control, I could bleed again... If that happens I may end up having to have an emergency Hysterectomy, and either situation could mean that I could possibly bleed to death. This scares me so much... I do not want to die, and I am so afraid that something else bad is going to happen.
I am struggling to come to terms with all the information that's been given to me, I feel so afraid.
-
Look at what my best friend did with my picture!
-
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 did have massive PE due to birth control pills, but nothing like you are describing.
I just wanted to let you know that I read your post and that I am thinking about you. You will be okay.
It is very normal to be scared especially with everything that is happening to you.
I am sure the doctors are taking good care of you. Make sure you write down all your questions so you don't forget to ask any when you see your doctor.
Best of luck to you.
Not to mention I keep reading things like, "Pulmonary embolisms occur in 30% of people with DVT, and cause 60,000 deaths annually, many of them unrecognized and labeled as heart attacks."
That's scary!
I guess my next question would be what are some ways I can try to calm my Anxiety and De-Stress from everything that's going on??
Not reading all the statistics on PE mortality can help with the anxiety. Why do that to yourself. You're on treatment so the risk of dying from a PE is slim. Anxiety is very common after a PE. Therapy helped me, but there are other things you can do, like taking anti anxiety meds, meditation, exercise, etc.
Are you consulting with an OBGYN or just your regular doctor? If you did need a hysterectomy, and I hope you don't, they would take you off anticoagulants to perform the procedure and then monitor you for bleeding and for clotting. I think given your history they'd try to put measures in place to keep you safe. If you don't feel comfortable, then getting a second opinion is always an option. It's important to be told specifics and given some clear direction on what is recommended, not vague stuff like you could bleed to death or you're in between a rock and a hard place. I'd not accept that as an actual medical opinion.
Try not to be afraid. I know it's hard but it's also hard to make informed decisions when fearful. The best thing you can do is try to take some control back. Like AndersDanAnders mentioned, right down all your questions for your doc and don't be afraid to push back if something doesn't make sense.
You'll be ok.
I had my PEs at age 35, so about your same age. No cause for mine though... at least you know what caused yours, so that's helpful. The death statistics for PE are usually for those that are undiscovered. Once you've been diagnosed and treated, you're in pretty good shape. Then, it is just waiting for your body to heal.
I'd definitely get in to talk to your OBGYN as soon as possible ... and maybe get a second opinion as well. Writing down questions is good, as well as taking a family member to listen to the information as well. You do have a lot going on, but you made it through the PE, so you're strong enough to take on the rest of it.
Also, yeah, the anxiety can be a real b$tch after PEs. I was a mess for months and finally wound up doing meds and therapy to help me work through it. I'm mostly better now (5.5 years past diagnosis), although I'll still have days every so often where I'm just worried about everything.
Hang in there! It does get better ... take it one step at a time and take control of the situation again. Keep us posted on how you are doing!
Thank you TossNTurn... I will be journaling and trying to find ways to de-stress and lower my Anxiety, and I will update as I know things.
I do feel less anxious today, so I think everyone's comments have helped with that. I decided to get off sites about PE and DVT last night, and instead I worked on my movie collection. It was a nice distraction.
If any of you are interested, you may add me as a friend and I will keep you more updated that way :)
I'm also stuck with PE because of birth control. I caught up with my gyno just a couple of days ago, so maybe some of the stuff she told me might be helpful?
Apparently estrogen is primarily what causes the increased risk of blood clots with BC, so progesterone only BC might be an option. The Depo shot is good for 3 months at a time and the implant (Implanon) 3 years. And, of course, if mini-people aren't in your immediate future, there are a slew of IUD options (Copper, Mirena, Skyla).
It's insane how overwhelming all of the diagnosis and treatment information can be. Not to mention how strangely isolating the diagnosis itself can be. Thank goodness for this group, right?!
Of course, it is up to you to decide what you're comfortable with. You should definitely do your own research, even outside of what your doctor tells you. In my case, I got my second DVT six weeks after starting a progesterone-only birth control... which two different doctors convinced me was safe. At this point, I won't touch any type of hormone treatment again.
I went with the copper IUD for BC (no hormones) after my PEs. Insertion kind of sucked, but otherwise it was low stress and effective. At this point, I've done the Essure procedure as a more long-term solution.
In your case @ErinTaylor, I don't think the copper IUD would be helpful, since it tends to increase bleeding. There are people who are comfortable with one of the IUDs with hormones in it, mostly because the hormones are supposed to stay in the uterus, but again this is up to you. Gather information and make the best choice for you, based on what you feel. Doctors can give information and advice, but ultimately it is your choice what you want to do with your care.
Just as a word of advice, write down the questions you have before your appointment with your new doc. There is nothing more annoying than walking out of an appointment and realizing that you forgot to ask THE question.