My worst was not about my PE... I was told this after they discovered suspicious "shadows" in my lungs : "As long as they're not bothering you, you're okay." It's cancer! And no, they're not "bothering" me, just killing me slowly!

"As long as they're not bothering you, you're ok" is something your mother tells you when you're a little kid and you have a pimple on your ass or something that insignificant.

Seriously, wtf?? I can't even get my mind around that statement.

About a week before I collapsed with massive bilateral PEs, a doctor told me that my shortness of breath was asthma, and my rapid heart beat was--get this--"a sign that you're alive"!!! Well, no thanks to him, I AM alive! Many docs just do not listen, do not pay attention, and give their patients very little credit. I had had a DVT 4 years previously, too, so there was no excuse at all for him dismissing my complaints with such a thoughtless and idiotic remark!

Holy Cow, Mousse! Can't even believe that. You've been through so much and then...really??

I much prefer the approach my current team of docs seems to take: let's prove it isn't the *really bad* thing and then we'll go from there. Guessing without checking to be sure is like Russian Roulette...but the gun is pointing at the patient!

I realize I risk a bit of push back for what I'm about to post but in the interest of continuing some dialog on both sides of this discussion: What good things has anyone experienced in their recovery from PE/DVT? What information have we garnered from experience and forums like DS or NATT or other sources that we have used to spread the word that there is an information gap here on the discovery, treatment and recognition of our disease (prevention and treatment) ?

Let me start, on the positive side of this equation, in the 5 doctors I deal with for DVT/PD (PCP, IR, Vaccular Surgeon, Pulmonologist and Orthopedic Surgon) I have had both well intentioned, informed, caring and detailed information regarding my treatment provided. I have also had mis-information, ignorance and strange advice (IMHO) provided as well. I decided early on that I was the vector to connect the dots to discuss my treatment to all the parties involved and get the best possible care and information involved in my treatment! I ask questions continually and don't take any information or advice at face value ever since it almost cost me my life initially! What role do we as patients play in this paradigm? Do we sit back and trust or do we question and participate? I suspect we will all get better results if we play an active role in our treatment and if our care doesn't meet our needs or expectations we need to (as RMB aptly says) fire our provider.

I tend to gravitate toward asking my providers what outcome give me the best chance of getting back to where I was before my DVT/PE? If path A is 10% and path B is 30%, sign me up for path B but don't just tell me follow a path and 'trust' me. That is the "fool me once" scenario in my book. As DVT/PE survivors we need to be vigilant and participatory in our recovery - ask LOTS of questions and read and absorb any of the research that is out there! -P

Laying in CCU just a few days after my big event one of the pulmonary doctors came in just before visiting time ask how am I doing any pain you know standard questions. Now my right arm was swollen from my fingers to my shoulder. About the size of a speed bump with a nice black & purple bruise from my wrist just past my elbow on the underside of my arm. He asks me if it hurts which it didnt but I could not lift it maybe a inch off the pillow it was resting on. Then he asks why can you not lift your arm ..Guess it was a good thing he woke me up to ask that question (oh yeah I was still asleep when he came in) because if I had been awake I might have told him that a buddy from work was coming to see me when he gets here I want you to go outside with him lay in the street, stretch your arm out and let him run over it with his motorcycle. Have them give you bed next to me then we can see whos arm get the highest off the pillow and ask you that same question. I did not go to collage but common sense is just common sense.


I am not usually a smart a** but I can be at times

When my doctor sent me to the hospital emergency I could tell she was worried and she wanted me seen to ASAP. She told me what was likely to happen, involving a blood test and a CT scan. I went to emergency and waited for a few hours. To cut a long story short, I waited 15 hours sitting up all night with excruciating PE pain. Then they gave me the D-dimer test which was negative. After asking to see the next doctor up, I eventually got to the specialist whom I argued with as I told him my doctor wanted me to have the CT scan. He was so oppositional that I asked him if they are told not to order them because of cost. He said he "didn't give a stuff" about the money. They kept going on about the risks outweighing the possibility of a PE. I had had an operation 10 days earlier and had pulmonary chest pain with slight SOB. When it was time to leave I asked the next doctor on duty if the negative D-dimer was 100% indication of no PE. She said yes. They decided my pain was fibromyalgia despite me saying that it felt nothing like any fibromyalgia pain I had ever had. They sent me home with a letter saying the patient left reassured!

Obviously I was not reassured because I rang my doctor that night to double check with her as I still had the pain. She said get a scan quick. Either come and get a form for the morning or go to a private hospital that night. I had things to do on Saturday morning so I went to the private hospital to get it over and done with. They poked me with needles, took an ECG and a cat scan. It was like heaven compared to the public hospital despite feeling so bad. I had a doctor in 2 mins and a bed in less than 1. Anyway my test came back negative. Well so I thought. They told me the CT showed no PE.

Two days later I got a call from the emergency centre at the private hospital telling me I must come in immediately as the scan had been reviewed and they had found a clot in my lung. 9 days later I left the hospital.

Then recently my doctor decided i had had too many episodes of SOB worsening and pain so he sent me for a VQ scan. I couldn't believe the report. It said the scan was fine but it also said that I had had a CT scan on 12/3/10 which did not show a PE. That was the scan that was reported on incorrectly and noone had fixed it on the system.

Petvs, I agree that we do have to take control of our own treatment, so I did. I went straight back in there and demanded an explanation for why it was reported incorrectly again. The manager took me to her office and explained that there had been an incident report on my case and she knew me very well. She said the scan had been sent electronically interstate for reporting out of hours and it was then reviewed by the hospital specialists. I also told her that after my first scan stuff up, I had specifically requested that two doctors report on my scan. This did not happen but she said that she would get the doctor to talk to me. I had a lengthy talk with the Nuclear Medicine doctor who reviewed my new scan and said it looked ok as far as large clots were concerned. He showed interest, looked at my scan several times carefully and asked me questions about my warfarin levels. He advised me to see my physician sooner rather than later. I felt very reassured after that but geez, did I have to fight for it.

petvs, would you agree though that you really didn't approach your health care this way until AFTER the PE? I know I'm being presumptuous, but I have to believe that's generally the case for most of us.

I mean, the thing about taking control and being proactive about your health is something most of us learn AFTER a traumatic health event, like a PE. Like I said,I was a different patient before the PE than I was after the PE. Before the PE, I was always passive, thinking, well, I'll just do what they say. And I'd voice my concerns in a very unconfident way, as if I wasn't sure, that maybe it was in my head, kind of way. I don't do that anymore. I think that's what got many of us misdiagnosed- that we mistrusted our own selves after being second guessed by a doctor. After the PE, I have a whole new insight into my own responsibility to myself.

RMB, That's a great point, DVT/PE was a wake up for many of us. It did change my realationship with my doctors but in a positive way I hope (now as I look back). I never would have questioned a doctor before, now my approach is more skeptical and want to know more information before following the advice and am not shy about asking. I probably wouldn't have 'fired' a doctor before, but have jettisoned a couple in the last year. I get second opinions now as well (and not just to find one that agrees with what I want to hear :-))

This certainly has been a journey through a dark place at times but there is occasionally a silver lining... -P

Yep, I think that IS the positive outcome for many of us, that we either found better docs or we changed our role in relation to our current docs. And I know in my case, it just made me realize, I gotta wake up and take charge.

I will say this, that it's not so much the misdiagnosis or being blown off that was the real kicker for me. Docs are human and not always right. But I wanted my docs to know that they screwed up and I wanted them to be sorry. The PCP I had at the time of my diagnosis was a very nice person and I liked her a lot, but she was the second doc to blow off the DVT. Her colleague in her practice was the third doc. After getting out of the hospital,I made an appointment with her and told her, look, that was a DVT, not phlebitis and all that SOB and high heart rate was a PE, not anxiety. She felt AWFUL and apologized up and down and said she was going to also tell her colleague (he's the one who told me to just work through the pain). She was visibly shaken. I needed to know that she felt bad. It was a very good experience for both of us I think, because I hoped it helped her become a better doctor and it helped me feel both in control and forgiving of her, somehow.

But I still had to fire her.

You also had the opportunity to teach! I'll bet the next person that went to that practice complaining of leg pain was evaluated differently. Good job. -P

I think the best one for me was. After my second PE episode it was evident it affected my heart or my heart affected me having PE's. Anyway I was put on a medication to help slow my heart rate. I have to take this medication twice a day. OK so about 3 months later with another PE, I'm in ICU and the alarms are going off every time I went to sleep. Finally the nurse comes in and tells me my heart rate is dropping down below 40 when I fall asleep, and I told him OK. He then asks me if my heart rate drops that low when I fall asleep at home? WTF, How the Hades would I know, Hello I'm asleep!!!! The he asks me if I get dizzy when I'm asleep at night? I sincerely was wondering what part of "ASLEEP" he wasn't getting? LOL being a nurse I told him to reset the dayum monitors so they didn't alarm at that rate and turned over and went back to sleep. I can truly understand why some people don't think to highly of some nurses.

1st PE, age 18 and scared shitless, curled up in a ball in the Assessment Unit bed and trying so hard to scream I was passing out. Never felt pain like it before and was convinced I was going to die.

Doctor Paisley (I will never forget her name or her face): "Oh, for Christ's sake girl calm down. This is all in your head, just go home and stop wasting our time."

On May 23rd of this year I went to the ER with SOB and pain in my upper back. I have a history of DVT. The doc did NOTHING but tell my I had a virus. I was instructed to go home and take Tylenol Cold. The next day I was at a different hospital with even more SOB and pain. The results, a massive bilateral pulmonary embolism and a clot in the leg. I guess the Tylenol Cold meds didnt work..ughhh

Gosh! Where do I start!! Seems to me that quite a few doctors ask dumb questions or say dumb things when it comes to DVTs and PEs. Although I have to say a lot of the comments are due either not listening to what we have to say or to a lack of understanding of the conditions. I suppose the dumbest thing that I've been told lately is an example of not listening. When I was in the emergency room I was told that having a BP of 150/95 and a resting heart rate of 95 was normal when I had already told the doctor that I did a lot of sport and exercise and my resting heart rate was 48 to 52 and that 95 was definitely not normal for me!!!