Interesting thought, Ferr. I have said that if I ever win the lottery where I wouldn't have to make money at a living, I'd become a PE/DVT patient advocate. I'd swoop in before they're discharged from the hospital and say, ok, here's what you need to know, here's what to expect, etc.

But I also think, if I'm honest with myself, we don't necessarily represent all PE/DVT experiences here on DS. We are a small subset of the PE/DVT population, I suspect, and we only know our own experiences, but there are probably tons of people who maybe had a different experience than us, and don't feel compelled to seek support, or tell they're story, because it's not necessary for them to do so. They've done just fine with the information they have for their recovery.

Very true RMB, It's just so frustrating not seeing good intelligent information getting to people when they are discharged from the hospital.

Absofreakinlutely!

Actually, you know what I'd like to see- it would be nice if resources, like DS or Stop the Clot, were referenced in the the materials or discharge papers you get at the hospital, or the info our docs provide us. At least then, people would know that there are resources and additional information available to them.

When I was diagnosed and discharged I was sent home blind sided too, yeah I got the hand outs, the shots, and the basics but if not for this site I would still be laying here a month out from my PE crying from depression. I can not walk up the stairs in my own house with out stopping half way for a breather, I was not told about SOB, tiredness, ect. I thought I was just losing what sanity I have left in me. You guys came thru for me and pulled me thru the fog of this illness/disease/condition/syndrome what ever it is. I feel more human knowing that my feelings of depression, sleeping and SOB are validated. I say yes, lets make a better book from the patient perspective. I am a Victims Advocate as a career and this PE has made me feel like a victim. I feel robbed, scared, depressed, alone, sad, tired, just out of touch right now. Meechelle

I think that is a fantastic idea!! When I left the hospital, I knew the basics, but was fully unprepared for what to expect during recovery in terms of future pain, SOB, anxiety, depression, etc. It wasn't until my second stay that I was talked to about how healing hurts! Makes sense of course, but you don't think of that part (or at least I didn't) when I was there. The whole experience is so overwhelming.
After getting home, I looked up as much as I could about PE's, but not much focused on all the above mentioned parts of the process. It took me weeks before I finally decided to search for a support group, and I am so happy I did and found all of you! I also find this site useful in helping me to explain things to my family and friends. So I think a book woulod be wonderful in that aspect too.

i think that is a wonderful idea. when I was discharged from the hospital I was given a bit more info than most people and my boss was a pulmonologist so I always had someone to talk to. I am a sleep tech and we have a lot of patients that come in with respiratory issues and it saddens me when they know nothing about what to expect.

I think that is a GREAT idea. When i was discharged they gave me a paper about anti-coagulants. They didn't give me anything at all about PEs and what to expect. I thought I would be back at work with no side effects in 2 weeks. I was shocked to figure out how long this was going to take to recover from. I didn't even have a follow up appointment scheduled with my pulmonologist. I contacted her after three weeks because I thought something was really wrong that I wasn't better. I think most people don't realize that PEs are really a spectrum disorder and therefore different for everyone.

I also think it is a great idea. I was sent to the ER with a large DVT where my PEs were discovered. Five days later I was released with Lovenox and Coumadin. All I had was the two info sheets for Lovenox and Coumadin, and prescriptions for both. My sugestion for the doctor's staff to make an appointment with my doctor was accepted as a novel idea. All I heard from both nursing staff and doctors was that I would be on Coumadin for the rest of my life. What the heck does that mean? A book or booklet would have helped me and my wife tremendously.

Actually, I think that caregivers (doctors & staff) could use the book too. It is common to them but new to us. Until I found this site I knew very little about DVTs and PEs. Or, what that meant.

Though I am 60, I am still a certified spinning instructor and my bike is calling. But I have been afraid to even touch the handlebars! The discussions about exercise have been very uplifting, comforting and made very hpeful for the future. I'll ask my doctor during my next visit.

The more I think about it and discussed it with my BF, he has connections in the publishing industry, he thinks its a good idea. Even just a book on all of our posts and advice will be good for someone, I am a Journalism major and a Victims Advocate any help I can offer I will Meechelle

I think this is a great idea. I also like rmb's suggestion of becoming a patient advocate. When I had my stroke in '99, they found that I had a hole between my two upper heart chambers (patent foramen ovale PFO). I had open heart surgery to close the PFO, and the day after my surgery, two men came to visit me in the hospital to help explain what my recovery would be like. They were great! It kept me from freaking out about every little thing. (Specifically, they told me it was normal for people to worry about their hearts stopping, since it was stopped for the surgery). Even in that capacity, we could be very helpful.

Ferr,

Both the National Blood Clot Alliance (www.stoptheclot.org) and Clotconnect (www.clotconnect.org) are trying hard to get the healthcare professionals to pass on literature to patients when they are released from the hospital. It's a big task with small successes along the way.

One book that is a great resource is written by several authors (one of which belongs to NBCA):

http://www.stoptheclot.org/100_qa_promo_page_1.html

I know both organizations have bookmarks which are being passed to those involved in anticoagulation management through either the Anticoagulation Forum or American Society of Hemotology (ASH).

Separately, I have been trying talking to a good friend of mine (Joe Buff) who is a author who writes books submarine warfare novels (one of his books is being turned into a movie). His wife, also an author, writes several healthcare related novels (Sheila Buff). She has done Atkins diet books, Cancer, etc. Anyways, we have informally discussed the possibility of writing a books with the help of Dr. Stephan Moll. The book will be geared towards the healthcare professional but from the outline that Dr. Moll gave me, it will cover every a lot more then the book mentioned about. How far done the road before the book comes a reality, I don't know. Dr. Moll has been busy getting Clot Connect up and running and Sheila has other books in progress. It will eventually come to reality.

In the meantime, a lot of the questions and answers found over at the fvleiden.org website are being updated and slowly being brought over to the clotconnect website. Also, the patient on-line support group will start up.

Regards,
Tom

While Tom's info may be a good source of information and authorship, his comments are geared toward the healthcare professional. What is needed is literature, in layman's terms, that discusses and informs the receiving end of the DVTs and PEs. Good information -- what are they, how do they form, what to expect, life after diagnosis and treatment, dietary constraints, exercise, info for spouses and family, etc. All of which I received none and desparately needed.

Not necessarily so. The point is that if providers are educated, they can the in return educate their patients. Most doctors and nurses who treated you in the hospital don't know what to tell you to expect during recovery because once a patient is discharged they never see the patient again, so they never hear about the post PE recovery. How would they know what to tell you if they are not doctors who typically see patients outside the hospital. Also, everyone's experience is different so there is no one thing to tell each patient about exercise, for instance. This is not a one size fits all situation. It's going to depend on your clot, your health, and other variables. And frankly, if anyone leaves a hospital not knowing what a DVT or PE is, then you have terrible doctors, you're not paying attention or you're not asking questions.

Anyway, I believe informed providers means informed patients.

RMB - There are many reasons why some of us are not getting or given the information we need, be it poor doctors, over crowded hospitals trying to empty beds, where one lives, insurance, choice of doctors, and a host of others. The point is, something that is needed is information from the patient's point of view, not just clinical. If this ailment was a one-fits-all, there would be little need for more information or a support group.

I don't dispute that. I felt like I was just tossed into the wild to fend for myself a bit too, but as time has gone by I understand more that post PE life is sort of un-chartered territory, that docs don't know everything there is to know about what it's like to recovery from a PE. But I didn't hear in Tom's post that the information that they're hoping to pass on to providers to pass on to patients is purely clinical. That wouldn't make sense since it's the advocacy groups who are trying to get the providers to pass on the patient info.

And seriously, I just don't know how if you were diagnosed with a DVT or a PE, how you'd not know what that was. I mean, if a doc tells you that you have a DVT, I'm not sure why you wouldn't say, I don't know what that means, can you explain. I was in the hospital for 7 days with my PE/DVT and knew every pill I was given, every test I was given, and why. Most of it was explained, but some of it wasn't, so I'd ask questions, right stuff down, etc. And kept asking until it made sense to me. My point was that patients need to step up and not be complacent as well.

Anyway, any info given is better than none at this point, and clearly work is being done to try to remedy this. Keep fighting the good fight, Tom!