Well, god knows I love a good rant, Ferr, regardless the topic.

Bouncing ideas and thoughts off one another- Yes that's what we're all here for.

Asking "should I be concerned" or "should I go to the ER"- I cringe when I see those posts. It's kind of unfair to ask that. Because what if we say no, and it really IS something serious. We can't know if you should be concerned. And we're all so freakin' freaked out from our own experiences that we can never, ever be objective enough to answer that for anyone. We think everything is a concern.

You're all nice people and stuff, but I'm not wasting precious time asking for advice on whether or not I should go to the doctor. I'm calling my doc or going to the ER if I'm symptomatic of a clot. I've done this on numerous occasions. And usually it's nothing. Sometimes, it has been something.

Rachelle, it's so interesting what you just said about 'what if we say no, and it really IS something serious.' I just was literally thinking about that yesterday, and as you said it's basically impossible for us to be objective because we panic every time we hear someone that has something similar to our own situation. There are times that it's comforting when we have something a little odd that we didn't expect during recovery, and hear that yeah, other people get that too. But with the concern over whether new or unusual symptoms need to be looked it, that's really impossible for us to know what to say. And I know that I try to always qualify anything I say with 'If you're concerned then talk to your doctor,' but there are also probably times when what I've said might deter someone from going, and I would absolutely die to have something like that on my conscience if that person really needed attention! I mean, when you think about it, most of the time even when we go to the doctor, they need to do scans because even they can't tell just by symptoms and appearance, and they get to look at whatever is wrong! I hate going back to the doctor more than just about anyone I know, but I feel like I also KNOW honestly when I need to get my butt there. However, to be fair (and you know I can't help but try to understand both sides of each issue) I know there was a time when I was newer to PE recovery that I did feel quite lost as to whether to seek attention or not - I mean everything felt so strange and odd in my body, and honestly I was just so exhausted that there were times I couldn't fathom using up the energy unecessarily to make an ER visit if it was really unecessary. I guess about the biggest comfort we can take is the fact that being PE survivors, we usually get the short line at the hospital and they take care of us right away!!

Well, I what I adore about you is your fairnessr, Sarah. I do. It tames the hot heads like Ferr... well, ok and ME.

I too have at times said, I wouldn't worry about it if I were you, because it will seem like such a benign thing, but then when I think about it, I just feel like man, what if I said the wrong thing, what if it's serious. I'd feel sick if my off the cuff response would cause harm, you know.

Oh, I totally pimp out my PE history at the ER. It's like name dropping to get into a really upscale restaurant.

Haha Rachelle! You know I would totally do the same thing if it were necessary at the ER! As it is, I'm like a patient celebrity and everyone knows me when I walk in. They pretty much send me back to a room before they even register me. It's soooo sad to be that well known at the hospital!!!

(Which, if it's a little lesson for newcomers here - means that there have been LOTS of false alarms here too. I think it's just an undesireable but often necessary part of the process of recovery, and going in for false alarms is the only way we can figure out what's now normal for us.)

What is this, the gathering of the hot heads???

If you think it's not right, HAVE IT CHECKED IT!!!!

How many times have I said that and gotten in trouble?
I don't care, that is my thought on the matter.
Have a nice day!!!
:)

checked OUT...

Life is TOO precious to second guess.

I totally get where all of you are coming from! I too was one of the ones that once asked "should I go to the ER." At first I was so scared and didn't know what was going on in my body and I was freaking out at every single little thing but as I got to know my "new normal" it got easier to tell what was something to panic about and what was just normal healing pains. I now listen to my body no matter what...if my conscience is telling me something is very wrong then I listen to it.

The fact is that only WE know OUR bodies better then anyone else and we HAVE to listen to our bodies and be in tune with them especially after what we've all been through. Yes, you have to get used to your new normal at first with clots but if you think something is wrong by all means go to the ER, who cares if people think you're nuts for going to the ER and it's nothing! It could be something and who are we to tell you if it's an emergency or not when we don't know each other in real life. You know that gut feeling you get sometimes that tells you something is not right...yeah, well listen to it because most of the time it's right.

We can't guess and tell someone if they should go to the ER or not, that would be wrong of us. Listen to your gut instincts when you think something is wrong!

Gee thanks Ferr, now I feel a whooole lot better about this whole PE thing!

:-)

I guess for a lot of us this is all totally new, and having been pretty fit and healthy as a horse up until now (are horses unusually healthy?) I really don't know what's serious and what's not. To be honest even when I couldn't walk up a flight of stairs, I thought it was just the after-effects of a bad round of food-poisoning, not multiple bilateral PEs. I felt fine prior to diagnosis! I've felt much worse since I started treatment, ironically, except that I can actually walk around the block now.

So hopefully I would recognize another PE. But ???

Also, here in the land of free health care (yay), the wait times at the ER are usually really really long (boo). A "short" wait would be 8-9 hours here. Average is more like 12. So it really is a majorly inconvenient thing to go to the ER, especially if nothing is wrong.

But I do get your point. I just like hearing from others here whether they've had similar symptoms or not!

their are somethings you can talk to your doctor about and set up in advance such as standing orders for protime testing at the doctors office and your closets or most likely used hospital. for instance when you are worried your protime is to high to low teeth bleeding pink urine ect. you know the drill . i would just go in do the protime test call the doctors office leave message got test done at... time reason for concern and having it done.also same thing for those of you prone to UTI infections i have standing orders at clinic and hospital no more 5 hour waits at the urgent care on weekends. just leave the doc the message. i am currently on lovenox and the last few days my arms are covered in what i call freckle hemorrhages i called the doctors office and now we have an agreement on that i have a standing order for a CBC so if i am worried or see things like that or this funky rash i'm getting i don't have to drive an hour away to see him just call and tell . one stress and urgent care or doctor visit off your worry list. i ask him to renew it every year it is a huge stress release. as long as the doctors gets the message you had it done when where and why. i wanna live who the heck cares that my medical file is 23 books deep by now. when anyone makes a comment or treats me like crap they get the evil eye and a call to complain if necessary. your husbands, wives, children and you need you don.t waste your time wondering should i go. i would be dead for sure many times over, my friends might be ready to kill me by now they have had to take me in so many times or pick me up. but i get to do payback and help a friend in need tomorrow score. one for me. happy to do it.

while i am at it you don't have to have a good reason to go in if you are worried go. i had a bad feeling something was wrong with my husband nothing concrete just knew made him go to doc next morning. told the doc i just didn't like the way he swallowed it was different. check him three hours later he was diagnosed with end stage esophageal cancer. didn't need a reason just a feeling that leep of faith gave me 23 months instead of the 2 months the docs gave him. just go......

Ok I knew i'd get people fired up over my Rant, and most of you get what i'm trying to say here. I'm not dissing anybody for discussing new weird symptoms and wondering if anyone has ever had the same symptoms as I've had or whatever. But a lot of times I read posts that are very concerning to me, and I feel people are wasting their time sitting on the stupid computer on a web site asking questions when they know in their hearts they should get their butts moving and get into see a doctor. I see people asking for medical advice on this site often, and to me that's scary. For those of you in the UK I do understand how long it takes to get into the doctor in the emergency department however if your gonna drop dead wouldn't it be better to do it someplace someone can at least have a better chance at resuscitating you? Seriously, i'm not telling anyone not to ask for advice here, nor am I trying to keep people from discussing their problems and getting information on weather or not others have had the same situations. I'm just trying to encourage people to be a little more pro active in trying to save their own lives. After all isn't that what Blood Clot Awareness is all about. "When in Doubt, Get it checked out"!
And yes i am a hot head.
ferr

I suspected you were. We know our own kind.

I'm completely in agreement with you on that, Ferr. I too have seen plenty of posts that are very concerning to me too.

I wonder if sometimes people know in their hearts they need to go in, but for whatever reason also feel that they need the validation of a bunch of us here say "Go get checked"? Because as a group, that is pretty much our standard answer. In that case I am with you - just go! If we know something is off, it needs to be taken care of as soon as possible, and not let to go hours or days waiting to hear what other people think...

Sarah, I think you're right. It's like validation of what you are already thinking. When you're all new to this, it's hard to know what's normal and what's not, because no one really prepares you for post PE recovery. Doctors fixed you- you didn't die from a clot. But there's no real preparation for what to expect after that.

Ferr, RMB, etc - I kind of get where you are coming from, but I also feel you have had time, experience and education from this site that helped you get to where you are at. I could be wrong and from the start you knew not to post here asking if you should go or not.

I think that is great. I also totally agree that NO ONE here has the credentials to give medical advice. I belong to another online forum for parents with kids who have bipolar disorder. We are VERY careful how we word things and basically only share 'our experience' with a certain medicine, test, treatment method and follow up by saying when in doubt ask the doctor. Sadly, with child psychiatrists there is a huge lack of knowledge on the treatement for pediatric bipolar so sometimes we cringe when we see a newcomer and hear that their child has been prescribed stimulant meds and/or antidepressants but NO mood stabilizer. Sure enough we wait and the desperate parent will be back (we usually give them 'our experience' with stimulants with no mood stabilizer because as newcomers many of us have run the gauntlet of so many doctors who really don't know how to treat pediatric bipolar) and we go over our experiences with them again and along the way, they learn.

I had read some when I first signed up so I actually did not go racing to the ER at the first sign of SOB and sporadic chest pain because I learned from reading about your experiences that this is not uncommon. However if I want to play devil's advocate, someone could take from anyone's posting and think 'hhmm...turned out to be nothing for Karen..or Ferr...or RMB' so I'll just dismiss this so there is always a possiblity of someone applying something that has been shared without us ever knowing.

Sarah was dead on when she said that most of us honestly KNOW we should probably go, but we are looking for validation - not necessarily 'yes, you should go', but even the 'if you are concerned then go' and assurances that 'it is better to go and find out it is nothing, than not go and possibly have it be major..and maybe even die'. NO ONE in my family or my personal life understands - people on here are the ONLY ones who understand even the ones who might be frustrated by us asking 'should we go'.

In the end, we aren't really asking 'should we go' in most cases although that is the way I worded my request the other day and I noticed the lack of responses and figured folks just shied away from the topic. Underneath it all, there was a scared lady (me), who has no one else who understands...really just looking to know I wasn't nuts for thinking I should go and yes, there was hesitation there, but I'm also used to being so darn healthy that part of it is I am not used to analyzing ever twinge, ache, SOB, etc. because I have always been so healthy! I always ignored the onset of a cold, flu, stomach virus and just blocked it out so that is my tendency.

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.

Ferr and RMB - I think you both bring up good points and I will rethink wording on any 'advice suggested' requests I make, however just remember there are people who are sometimes hesitant to ask a question because they might appear stupid (I am not one of them)...I definitely would rather see them ask than not ask..and not go when they need to. I wish this site had 'frequently asked questions' so we could put the most often asked questions and responses. As an example Question #1) I'm having some pains and shortness of breath, should I go to the hospital or is this normal? ANSWER: When in doubt, get it checked out! As none of us are doctors and know the specifics of everyone's health, we cannot give medical advice. If you are concerned enough to wonder or ask, please go. We have all had our share of 'false alarms' but we've had our share of real events too so call your doctor and get it checked out.

Anyways...just my thoughts...

Karen