Sometimes for me it's not what my doctor say but how he makes me feel. It's my PCP. He never directly says a symptom is in my head but always gives me a look like it is. Or tells me that my symptoms have nothing to do with the PE or the warfarin for that matter (I was worried about possible side effects). Stuff that I never experienced before the PE.

I went in before because of random symptoms. Symptoms that were specifically listed as side effects of warfarin but he said it wasn't related. I still have them. Also, during the same visit I have been experiencing a painful tingling sensation in the heels of my feet and my legs. I was scared it was a sign of a DVT but he just told me not to sit with my legs crossed. The just makes me feel stupid!

My pulmonologist on the other hand is just great! He never just dismisses my symptoms and actually addresses my concerns.

Oy, a book I could fill on this one.

My last PCP would roll her eyes behind my back when I would ask her a question. I caught her doing that after she saw me for 30 seconds and was heading out the exam room when I asked her if I could just ask her one more question.

I have a developed a f**** off attitude with most doctors / nurses as a result of my DVT being misdiagnosed three times by three different doctors and my PE symptoms being dismissed as anxiety and that I'm just "very sensitive." WTF. Really.

I have fired two PCPs since 2007 and found the BEST internist. It's really about finding a good fit with your doctor and also becoming a good patient, in a way. Because I'm a different kind of patient post PE than I was pre PE. I now go to appointments prepared, listing questions, speaking specifically, asking questions and just in general taking control of my situation and becoming an active participant in my care. Some docs dig that. Some clearly think you should shut up and just do what they say and don't think twice about it. Ok, from what other person in your life would you put with that??? A boss maybe, but even then, I gotta say, nope.

And the dumbest thing a doctor ever told me was the third doctor I saw about my undiagnosed DVT. He said to "go to the gym and work through the pain." The next morning EMTs were working on me in my living room after I passed out and couldn't breath from massive PEs in both my lungs. Boy does that still infuriate me.

"if you THINK you are okay, you WILL be okay" hmmp.......5 hours later i was in ICU....i guess i just didn't think hard enough!

When my doc responded to my pain in my stomach and horrible acid throughout my digestive track after being given meds in the hospital with my PE was caused from being severely constipated(I was constipated but there was an underlying problem little did I know).....hmmm I have been recently dx with Celiac disease. I think that came back to him with a suprise. He had made a comment that sometimes when were lying in the hospital bed we tend to notice things we didn't before...like digestive track moving or gas..... It wasn't in my head, I have Celiac that decided to become really active from the stress and trauma of the PE and didn't know it at that time....that was probably why I was having horrible burning everytime I ate throughout my digestive track....It made me not want to eat for a week.....ugh. I like my doc but sometimes he urks me.

Unrelated to my PE, but a few years ago, I had a cardiologist tell me my slow heart rate was caused by depression. When I suggested the possibility of carbon monoxide exposure, he wasn't interested. It turned out to be exactly that. Idiot. Surely my recent divorce was much more telling than the gas leak in my house!

I have a few, but I will pick two favorites. Just hours before I was admitted to the CCU, I was given a paper bag by a dr and told maybe I was hyperventilating! I said, no, I just can't breathe! This is with the O2 sensor on my finger alarming at my low o2 rates.
And recently, my dr said I was so strong willed, she wondered if I am having panic attacks that are so well controlled the only symptoms are high blood pressure and high heart rate. Still rolling my eyes over that one. Really, I said? Can you sleep if you are having a panic attack, because that is all I want to do when my blood pressure is this high. Whatever. All I could think is if she thinks it is in my head and it is causing my body to have dangerous high blood pressure, the least she could have done was given me some Xanax or something for my "head"!
Jo

well, after my PE i couldnt walk, it took FIVE doctors and 8 months to figure out that, shit, both of my hipbones had died , yes DIED due to steroids that were wrongly prescribed to me! so one bone doctor said , when i told him i cannot walk, well you just need to get out of the house, see a movie, go to dinner. I said I CANNOT WALK TO THE CURB? and he just sent me home.. unreal !! sometimes they just act like we imagine this crap, well, when i called him back to tell his secretary the news and to fire him, he called my ass right up the next morning seeing if i had any questions. I said hell no, i want nothing to do with you, you made me suffer for 9 months unnecessarily and now I am getting operations to fix your shortcomings! I really could sue his ass off if I wanted. He actually said to me "we are all afraid to touch you" at one point. When one doctor messes up, in my case with a prescripiton error of massive prednisone, NO other doctor wants to get involved if you are damaged because they know a lawsuit is to follow.

I agree with ranzzo. My PCP never knows how to answer any questions I may have about my symptoms on warafrin or my PE or DVT except that I should wait it out on the symptoms or ask the "specialists" Just this Monday I saw him and asked me about my Fentanyl patch. I am still on it and my GI doctor (who prescribed it for my pancreatitis was going to wean me off slowly so as to avoid very bad withdrawals) I explained this to him and told him I needed a refill on them because I had just changed to my last patches that day. He asked me why, wrote out a prescription for 50 instead of the 75 i was on. I explained why to him again emphasizing on the withdrawals part and he looked as if he could have punched himself for asking why AGAIN. I also told him the Buspirone I was taking for anxiety didn't seem to be working although it does say that it takes a while for the Buspirone to actually begin taking effect. He says to me that if it isnt working to stop taking it...then changes his mind it seems after I ask him to up the dose or change it to Xanax and tells me to continue with the regimen.... I am seriously thinking about calling my insurance and asking for another docotr. It is nice that he works walking distance from my house but not worth the unanswered questions and sometimes blatant disregard for the symptoms i point out to him. Hair loss and mind fuzz are peanuts to him as long as my INR is leveled. I'm not trying to live a normal life...who needs hair for that?

My two favorite PE related ones are, in the ER the admitting doctor insisted I had pneumonia when my chest Xrays came back. I was like um I have no cold, fever, congestion and haven't even had a cold in months. He said nope you have pneumonia and maybe a pulled chest muscle. I was like i don't think so. He insisted. And told me the pain was in my head. I've had natural childbirth including a baby born in my bathroom by myself, I know what pain is! this was the worst ever! Finally a cautious intern ran a Ctscan and MRI...yup massive multiple PE! Thank goodness I wouldn't let them discharge me with antibiotics!

I also butted heads alot with the anticoagulation pharmacists who'd call daily to adjust my warfarin doseage. They claimed warfarin and coumadin have NO known side effects. I laughed at that one.Then they said my being a vegetarian meant my INR wouldn't be stable. I was like you do realize vegetarians eat more then leafy greens right?! One of them even insisted one day out of the hospital that I drive myself with a fentanyl pain patch to the lab for an INR. I was like you're advocating I drive on narcotics when you got labs yesterday? My dr says i can go tomorrow. She said i had to and i quote "promise promise promise" i'd do everything she told me to do. I told her lady, i'm not a third grader, and you're not my doctor! Don't ever call me again!

Overall I've gotten rid of Pulmonary specialist, dr's, obgyn's...anyone I felt was detrimental to my health and recovery. i'm NOT afraid to demand a second third or fourth opinion, to demand full attention with answers to all my questions, and to do my own research. I know myself best! Being proactive was the best thing for my recovery. I'm now much happier and healthier with a great team of doctors who listen TO ME!

I guess all we really want is for our very REAL symptoms to be taken seriously. I'm a little tired of hearing about anxiety from doctors. There is no doubt that having a PE causes anxiety but the lines between physical illness and psychological effects becomes blurred at times and it's hard to work out which one came first. I'm not at all anxious when i can breathe properly or when I have no pain. Not being able to breathe properly does tend to cause one to become somewhat anxious. As the pain pierces through the back of my chest like a knife I say " Don't worry, it's only anxiety!".

I think women in particular get dismissed as having anxiety. THAT chaps my butt.

In all fairness to doctors, PE symptoms are often so similar to symptoms of other things. So, I can see how at first, doc's may think it's related to something else, like indigestion, or stress or whatever. And I've said this before, the ER doctor who treated me saved my life. Based on my symptoms, he started treating me with heperin before I was diagnosed. I feel so grateful that he was my doc that day. And my ICU doctor and Cardiodologist were both gems.

Doctors don't know everything. I actually appreciate when they admit that they don't know. I'd rather have that then when they give some dismissive bullshit response.

Well it wasn't so dumb afterall, but when I hear one of mine say, "I haven't seen this and I don't know" - we are in the same place & after this event in my life, I can now believe them! It also suggests a few things to me:

1) It appears to me that no one is compiling the research on this condition and cross-referencing these symptoms (symptoms are "complaints" in the med world) we are sharing - and publishing. I cannot believe that is true.

2) It seems like sometimes when I mention something and I am not sure if it is a symptom or not, and that I feel like I am not heard - I now better understand that often my doctor is thinking i am asking him to DO something about it. My stress is so much more reduced when he just acknowledges that he heard me and says something like,"Yes that pain in your chest could be a part of your healing." (I mean after all the test have been run and everything else eliminated, I am not going to sue him for saying that!!) A week after hospital discharge, tests CATs and Ultrasounds - I believe it was safe to assume my heart was not involved!!) So tell me!!

When a doctor finally told me this simple thing, I told him that he was the first person who had acknowledged or even responded to my mention of my continuing pain, even though all this work had been done.

My PCP STILL tells me I can come off warfarin and just take baby asprin, even though I'm FVLx2 and have had a DVT & suspected PE. Even though my hematologist said warfarin for life, and asprin does not work for FVL. I could walk in there today and have him give me the ok to come off. Last time he said, "well if you get another DVT, then you can go back on warfarin."
As if DVT's don't cause painful, irreparable damage to my veins? And what if that next clot is a fatal PE doc? Ooops!

I think about people who were told stupid things by their docs or dismissed and who paid the ultimate price.

Surviving a PE is like the ultimate dumb luck scenario.