As many of you know I work in a hospital and when we get patients here with PE's all we have to give as handouts when a patient is released is what we call Care Notes, not much help and is just a standard form that comes from our Medtech computer. I've read the care notes and it doesn't anyway prepare a person for what to expect or what to do. We also print out a standard form for being on Coumadin and Lovenox or anti-coagulants, I read in those care notes that they put in bold letters about the dangers of Vitamin K and if I didn't know better I'd be terrified if I were new to this. I seriously think we should write a book maybe title it " PE's/DVT's for Beginners" We could cover some of the weird experiences some of us have gone through, kind of what to expect and what is normal, diets, and how to deal with the anxiety. Unfortunately not everyone is finding our super blog here on DS even though many of us tell others about it. I know every patient and patients family I come across I send them to this site, and not just for PE's, but not a lot of people follow through. I think many people feel weird about sharing their experiences with strangers or admitting they need to join a support group. But people will read a pamphlet or small book if it was distributed at a hospital or Coumadin clinic.
Just a thought
Hugs
ferr