Massive pulmonary embolism

I know it's been a bit since I've posted, but had a rough recovery from my suprapubic catheter in May. On August 18th, my 25th wedding anniversary I suffered this. I actually died and they brought me back. They called it a saddle one, and you don't usually live through them. I just got out of the hospital tonight. This is a result of sitting and being immobile. Now blood thinners for life. I still have it and one behind my right knee, and was told they'd break up slowly. However, the massive one was mostly dissolved by using TPA. If I suffer another one, then they'll put in a filter. My question is why wait, what if I do die on the next one?
Has anyone had any experience with a situation like this? I'm pretty nervous about something happening, but don't want to let my husband know how much, because he worries so much now.
I was flat line at the hospital and they brought me back and saved me......I didn't expect life to be like this.

Wow. You're quite brave and tough.
I don't have experience with this, but I wanted to say thanks for posting this experience. It's useful to understand.

So sorry to hear this. I know Hollister had a P.E. a while ago too. Wishing you a full recovery

Oh my gosh, kf, what can I say? What a tough time you're having.
My love and prayers to you and your hubby.
God bless, Janelle x

Well your doctor is right, that a saddle PE is most often fatal, but it sounds like you are here for a reason. Blood thinners are actually often ordered for people who are not able to ambulate early on to prevent just what happened to you. Tim is a quad but we do not have him on anything as he actually bleeds easily, and it takes it quite a while to stop even a small cut. (cut while shaving)
I am not sure what your ability to move is, but if you could do, or have someone help you with range of motion exercises every 8 hours it would help. Be careful about putting a pillow under your knees as this tends to restrict circulation and cause clot formation.

Anyway I am so sorry to hear you have had such a difficult time and hope that you get a long reprieve from anymore trials like that.

Paulette

I had a similar experience a year ago June. Was on IVIG 2 weeks before and had a longish car trip. The same sequence of DVT followed by Pulmonary embolism. Massive pain and wake up 3 days later with all hospital staff telling me how i shouldn't be here. Scary stuff. I was only on thinners for 6 months though. All in all a crappy experience.
Vincent

My mom (not my PALS) had an allergic reaction to Heparin after breaking her hip the first time. At 77 she had DVTs in three veins in both legs. They moved to her lungs before the filter was put in. I learned to say Heparin Induced Thrombocytopenia three times fast--they say that surving that is pretty rare also. The filter is still there, and I wonder what the odds are of it becomming clogged if she develops clots again.

Thanks for the replies. It was a very scary situation. All I remember was going into my bedroom and next thing I can remember was a bunch of people standing over me telling me how I was in the trauma center and how I was very sick. They told me nothing but rest for 2 weeks, no travel for 2 months, and no longer in the car than 2 hours at a time. They put me on Xara to so I don't have to have regular blood checks. Just happy to be alive. They did tell me I died and they revived me, and it was touch and go for about 7 hours of them working on me. When I arrived at the hospital I was flat line, blue, white lips & unresponsive. Crazy!