Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Ok I don't mean to sound mean here but I just have to speak up, Especially since March is blood Clot Awareness month, and seeing some of the questions being asked. I sit here and grit my teeth when I read posts about should I go to the doctor or not?, Is this a sign of another DVT? For Pete's sake people if you have to ask then Yes of course you get your butt to the doctor. I don't care how much you hate going to the doctor. Who cares if it's a false alarm. You have been through the DVT or PE once and know what it feels like, you know as well as we do if it's another PE or DVT. I don't understand what part of the following fact you don't get. More than 600,000 people are diagnosed with DVT's & PE's every year. More than 300,000 people in the United States alone DIE from them. That's more than Breast Cancer and Aids combined. I know you have seen me post this before but obviously it hasn't sunk in for some people. PEOPLE DIE FROM CLOTS EVEN WHILE ON ANTI-COAGULANTS!!!! Are you afraid? You should very well be for crying out loud. Myself I have been fortunate enough to survive 4 episodes of Bi-lateral PE's, 2 of those events were while on anticoagulants. I have learned from my experiences to know when I need to get off my butt and get to a doctor. Many of the people who are regulars on this site have pretty much experienced the same things. They know when to get moving and get to the doctor.
I know this is a great place to ask for advice and read about others experiences however we are not qualified to diagnose, nor do any of us even try, so don't ask. Like I have said before if you have to ask if these are signs then go see your doctor, you can't be to careful or to vigilant. It's your life and you should not waste time by asking if you should go to the doctor, when you already know the answer
Like I have said many of us have survived several clotting events but thats because we are our own best advocates, it allows us to continue with our lives and do what we have always done. It hasn't made us disabled but has made us stronger and more determined to survive. Yes we get down, depressed and worn out but we continue to live.
I am sorry if my Rant has offended anyone but I feel it had to be said.
Ferr
I know this is a great place to ask for advice and read about others experiences however we are not qualified to diagnose, nor do any of us even try, so don't ask. Like I have said before if you have to ask if these are signs then go see your doctor, you can't be to careful or to vigilant. It's your life and you should not waste time by asking if you should go to the doctor, when you already know the answer
Like I have said many of us have survived several clotting events but thats because we are our own best advocates, it allows us to continue with our lives and do what we have always done. It hasn't made us disabled but has made us stronger and more determined to survive. Yes we get down, depressed and worn out but we continue to live.
I am sorry if my Rant has offended anyone but I feel it had to be said.
Ferr
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
So even going to the ER or somewhere else doesn't guarantee they will get it right. Heck, if I didn't listen to the little voice inside of me that kept insisting something was 'off' even though the CT-scan at the first hospital showed no clots (ended up being a bad CT-scan), I wouldn't have gone to another ER 2 weeks later and insisted something was wrong. I am my OWN advocate - so I've learned to push when worried enough even though I'm sometimes wrong, when I'm right it has been over this life-threatening event and actually for extreme illnesses my daughter has had (mother's intuition).
As my primary doc pointed out, I went to a very small, but specialized hospital so there was only 1 ER doctor, she was mainly checking to see if I might die, not looking for anything else. Turns out that if I hadn't gone to see my primary because I knew something wasn't right inside of me even though it might not be major, it was dragging me down, my infections would have gotten worse and who knows what would have happened. Maybe nothing..maybe something.
Guess I'm saying, it doesn't even have to be a major thing to need to get checked out. For me, going to primary was right call based on my own personal situation. Some are not as lucky to have a well-rounded, well-informed primary care doctor..as well as the long history we have together.
See, if it weren't for the folks on DS taking pity on this poor idiot, I may wait hours, when in fact reasonable people would go in 20 minutes. The folks on DS are great at talking sense into those of us scared sensless.
I think it's generally known that nobody here is qualified to give absolute orders...but I think we are highly qualified to give some solace and even a bit of guidance in these matters.
Wow, you summed up in SO many less words what I was trying to say..LOL. I've never been known for being succinct in case no one has been able to tell that yet.
I love the way you worded it as well! You pegged that aspect perfectly.
Karen
Karen I think you made some excellent points and I'm glad you brought up the issue of the lack of family support. I know for a fact that there are other people here too who don't have family support, their family situation discourages them from seeking help even though that person knows they need it. Like I said, I think it's a matter sometimes of needing to hear from someone else that you're not just an overexaggerating pain in the rear, but that yes this is serious, and yes, it needs checked out. I can't speak to how much this post might directly relate to the advice you asked the other day, but as a longtime member here and I don't want you to have the wrong impression, I think the biggest part of the reason you didn't get much response on your advice post was simply because it was the weekend. Activity slows waaaaay down from about Friday afternoon all through the weekend. Really stinks if you have a problem on the weekend, true. And I know from my own experience, if I see a post like that a couple days after it was posted, I won't usually respond because I figure that person has already made their decision long before. I'm sorry that you didn't feel that you got much support regarding that.
I know for me, I get really uptight when I see the question posed about whether someone should be concerned or not, or should they go to the ER, because so often, people who've had horrific experiences with their PE, will relay those experiences and scare the crap out of people, or you'll get someone like me, who is so far removed from my PE (it's been over three years) that I no longer get too worked up about stuff anymore. I don't want to scare people , but I also don't want to be to blase either.
So, please post at will and don't censor yourself, please. I mean, no one is saying that at all. We are here to support each other and share our experiences in hopes of helping each other, and to help ourselves.
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Most of us still freak out at pains even months or years later and I know that sometimes when my family doesn't get a pain that I'm feeling I come here just to make sure it's normal during recovery and yes, sometimes I should've headed to the ER first but I hate hospitals and don't go unless I really feels it's necessary so I come here to see what others think about it.
I know one thing...I have learned SO much about my body in the past year and 4 months and for that I am thankful because I now pay attention to things I never did before and I'm learning when to panic and when not too. I can also say that even though it's been hell, I wouldn't change what happened to me because it's made me be my own advocate with my health and helped me figure out other health issues that I've had most of my life. If it weren't for the clots I wouldn't have learned to be so hard headed and pushy with my doctors, I wouldn't have done my own research and diagnosed myself after years of being sick and then forced my doctors to listen.....
Just my two cents tonight.
I fully agree with what you have said, I have lost some friends to DVT-PE and why, because they did not go to the hospital when they should had and others did go but the doctors did not catch it in time.
I don't want to be captain bring down but so many folks DO NOT know the stats that are there about DVT.
More people die of complications due to DVT+PE then from Breast Cancer, Aids and Traffic Accidents COMBINED TOGETHER!!!!
Think about that...
If people get scarred by that, I say welcome to our reality, DVT +PE is a serious matter.
I rather waste my time waiting at the hospital and find out that there is nothing wrong with me as oppose to not bother going to the hospital and waste my life...
Heck I survived DVT already, once was too much already...
I'm also from free health care land and the thing you have to do at the ER is say, "I have a history of DVT or PE and I think I may be having venous issues" I did that and I was told to sit and by the time I was just about to sit, my name was called and I was rushed for a D-Dimmer and an ultrasound, so they will process you faster, but once you they know you are out of danger, yes you wait.
BUT I DID NOT USE THE EXCUSE of it's a waste of time...
I will add one more possible scenario for this situation. Many people here speak of trips to the ER as mostly an inconvenience of time and energy. I could be jumping to an incorrect conclusion, but it sounds like many of you have excellent insurance and solid support systems. For some with no insurance or crappy insurance, a trip to the ER is more than an inconvenience; it is digging oneself several feet deeper into a medical-financial hole. That ER trip may have far-reaching, real life consequences that impact one's day-to-day life for months to come. I can see why some might ask for the advice of those with more experience in order to save thousands of dollars.
When I went to the ER (very middle class neighborhood) and was diagnosed with my PE's, I saw a woman there who had two small girls. She had no back-up for them, and it broke my heart to see that she could not focus on her own condition, because she was so worried about what would happen to her children if she were admitted. I never found out what happened to her.
Just one more perspective for the kaleidoscope! (Yes I had to use spell check to get that one right!)
I owe you both an apology and/or clarification on this ection of my post (that is the one thing I don't like about IM, email, posts, etc. is because they are hard to interpret or we try to interpret them based on tone or even actual words). I went back and reread it and realized something about this section:
"Also, while I will be careful not to ask in the future, there are sometimes things that motivate people to ask the seemingly obvious due to something else going on in their lives - such as an emotionally abusive husband who is furious that 'I am ruining his Saturday' because I thought I should go to the hospital and was I ABSOLUTELY sure I had to go. He refused to take me to the ER two times previously, the first time my sick daughter took me and I was misdiagnosed, the 2nd time my 80 year old mother took me and they found the extensive PE's. I tried calling all my friends to have them take me, but they were out of town or didn't answer.
Out of desperation and trying to get the stress level which was escalating in my house and making things worth, I foolishly posted the question. I even thought at the time that I 'knew' the answer. However, just as I may go back to the ER again and have nothing wrong, I may post again something else that will step on someone's last nerve...but I will post it. If I can't feel safe here, then I'm pretty much sunk until I get another support system built up."
The part about "while I will be careful not to ask in the future" wasn't truly about anyone here, it was a flinch reaction from my own personal experience with my husband - I've learned to not ask him ever again about going to the ER. I was wrong of me to include that in the post but please know I didn't even recognize that was what that comment stemmed from...I've been conditioned to not ask for help and only to depend on myself from my situation and it wasn't fair to apply it to what you were saying. It is a poor coping skill that I've picked up that is not healthy.
I know in actuality neither of you meant this at all and neither of you would want someone to not post whatever they need to post. I can tell you are both very passionate because you DO care and because you have seen or known personally people who have passed away from this.
The same goes for this part " I may post again something else that will step on someone's last nerve...but I will post it. If I can't feel safe here, then I'm pretty much sunk until I get another support system built up."
That is not about anyone here, that is about me not feeling safe anywhere. I apologize for this part as well because this is not something I would normally say/type without much more thought.
While I may have certain issues going on that contributed to a knee-jerk reaction, I am still responsible for my actions in posting those 2 chunks in particular. What I truly mean in the end is I want to be more upfront and state what it is I REALLY need from the group which now that I see the truth of it (which I owe Ferr thanks for because I wouldn't have thought it over so much if she hadn't posted) really was:
"My husband is angry at the thought of having to take me to the ER and feels it is a waste of time. He wants conclusive proof that I have to go. I can't give him this. What I do know is I feel I should go no matter what because I don't know my 'new normal' so I don't know what could be serious and I'd rather err on the side of caution. I can't reach my friends and as much as I dread the ER because I'm there once or twice a month with my Dad already and I hate the thought of going again...I dread even more having my husband take me and I'm getting stuck on this. I just don't want an angry person taking me. I'd like to just drive myself but part of me says this may not be the wisest/safest idea either. I just need to vent/share that and figure out how to get there with the least amount of additional trauma to my psyche"
That is what I really wanted the other day...and something I am NOT used to needing..consolation (but NOT PITY!), understanding, and encouragement (not about going, but about sticking to my guns).
RMB and Ferr - I've learned much from you both as well as Sarah, CowgirlUp, and everyone else who contributed. In my line of work as well, we often are required to challenge co-workers on solutions and ideas and be a 'devil's advocate' so I overdid my comments a smidge ;)
I do like that we can all post and be civil even if someone (cough..me)..does have a reflex reaction that no one meant for someone to have based on what they posted. Keep up the good work everyone and please bear with this suddenly REALLY over-emotional girl (or as my medical records say..which actually made me more upset than the comments on my weight..."middle-aged" female - puhlease...I'm 29!!! Been 29 for a long time).
Best Regards,
Karen
First sentence should have started more like "I owe you both an apology and/or clarification on this section of my post..." I had typed 'ection'..and since there is no such word...I figured the smart ones not in a Coumadin daze currently would figure it out. Anxious ones like me might wonder if 'ection' if a medical related PE term that they don't know yet and worry over it. Busy ones might even skip over yet another 'tome' like reply from me ;)
My PE put a strain on my marriage for a while. Everyone in the house feels the stress. We came through it, but sometimes, I think it's easier to go through this stuff alone, rather than with a family or another person. Because you can't really focus your energy on just you. You have to take in account everyone else. It's sort of a burden in a way. It was exhausting to recover from a PE, and even more exhausting dealing with a spouse who couldn't understand why I wasn't back to my old self the minute I got out of the hospital.
To SpazMart's point, you are so right. Sometimes, the hemming and hawing about whether to go to the ER is due to the tremendous financial impact. It's a terrible worry. I have insurance and still have out of pocket costs so when you don't have any coverage at all, it's worrisome. But I will say this. It's not like you have to pay the bill then and there; hospitals will work with you on payments, and sometimes, even reducing the charges, if you call them and work with them. When I was young and had no insurance, I had a ton of medical bills, and I just paid them off in increments. It sucks, sure, but if you're sick, your sick, and your finances won't mean jack if you're not here anymore.
So, Karen, no need to apologize or defend yourself. You a) said nor did anything wrong, and b) these are your thoughts,and your right to have them. You sounds so stressed out, and for that I'm sorry. I went into counseling briefly after my PE, because I was starting to experience anxiety and so much stress. It really helped me just have someone objective, outside of this group, and outside of my family to talk to.
And I am a civil hot head. Unless it's something that really fires me up, like stopping at an ATM over the weekend that charged us FIVE DOLLARS as a service charge. I've seen $3, and $3.50 in these parts but never $5. Felt like I was robbed at gun point. Talk about being mad.
I can relate with so many of those, including lack of family support (that mostly when I was struggling to get diagnosed) and having horribly inconvenient circumstances for going. For goodness sake, I had a three year old and newborn when I got PE and took myself to the hospital because my husband felt that going to work was more important than me not breathing! I tried to refuse my CT scan once there because I couldn't work out how it'd be possible to get that while holding my baby! (The nurse just kindly came and took him from me and said, "Look, problem solved.") In recovery, it's been the same thing: I've got little kids and the idea of having to drag them with me to the ER or even the doctor is simply overwhelming. I know that isn't a "good" excuse, but I challenge anyone who is not in that position to really think about how hard it is to get the little ones dressed, loaded up in the car then entertained enough in the waiting room that every other patient doesn't despise you (which believe me is a losing battle), then try to have a productive conversation and exam with the doctor while the kids are going, "Mom Mom MOM" and hanging on you. And all this, when you're already not feeling well and just want to stay in bed anyway! So sometimes, we may know we need to go, but we even ourselves need an extra little kick in the pants to get us there, and that's where the group can be helpful.
Ugh, the finances of it all - I totally get that too. It's a major consideration for me when I'm trying to figure out when to go and when not. And yes, it's frustrating to go to the ER and know you just spent several hundred dollars to be told that nothing dangerous is wrong with you. I'll be honest I have to work hard to put it out of my mind, but then I remember how my initial clotting episode wouldn't have gotten anywhere near the point it did if the doctors hadn't been trying to cut corners and had just given me the stupid ultrasound that I needed to see the clot!! Yes, I already had a severe clot by then and probably would have had to be hospitalized, but I'm guessing that woud probably have cost maybe $5000. Instead, things escalated and my treatment topped $100,000. Shoulda seen us when we got THAT bill! My husband and I just looked at each other and laughed at the line "Your minimum monthly payment is $5437"! Oh yeah, just let me write you out a check...... So that memory does help me be responsible, just for the fear that what would be bad enough could become exponentially worse if I don't deal with it. And worse from every perspective - physical, financial, all of it!
That and, well, I want to live too.
I've said this to Sarah before, but I think an added complexity to this is parents who are charged with taking care of little kids. That's hard for some of us to understand because we can't know how difficult it is when you have little ones and maybe don't have a spouse or the kids' parent to help you out. My mom was married to my dad for 20 years. He was the least helpful parent. I mean, just a worthless waste of space when it came to being a partner and parent. And I remember my poor mom having to drag us kids everywhere with her, to the doctor, to the grocery store, to church, by herself, on a bus because my dad was never around or would not show up when he said he would. I'm 46 years old and that still affects me to some degree. So, we have people who are going through this PE business with extra burdens that some of us can't fathom. I have to remind myself to be cognizant of that.
My biggest problem with going to the ER is I actually feel GUILTY for wasting people's time if there is nothing seriously wrong with me. Even when I was there a few hours before my diagnosis, I was feeling mad at myself and guilty the whole time - and I was totally completely shocked that there actually was something wrong.