When I woke up with a headache at 4:00 a.m., and I didn’t think anything was wrong, because I didn’t have it earlier in the day. In my head’s defense, I hadn’t been sleeping and had a few long days and nights. In my doctor’s defense, I didn’t know anything was wrong the last time something was seriously wrong so I knew he would send me to the Emergency Room when I called him around 4:00 that same afternoon and told him I had blurred vision too. In my eyes’ defense, I was staring at a computer screen all day. In my doctor’s defense (again) that sort of thing never caused blurred vision before. In my defense, I knew what the outcome would be and the ER is time-consuming, expensive and sometimes inconclusive or seemingly even a waste of time. My doctor, seemingly the only one concerned about me (between him and I) by dinnertime, requested I head (no pun intended) to the ER to get a CAT scan. I did, begrudgingly, and told myself the whole way there I would tell anyone else in my shoes to go.
Hospitals never bothered me [before] so I wasn’t expecting the sheer terror I experienced when the nurse wanted to insert an IV. When asked why she said, “Just in case we have to admit you,” which completely sent me into an unexpected fit of tears. She and her summoned colleague decided against the IV and proceeded to stare at me for several minutes while I wiped the snot off my face and all over my sleeves. I went to sit in the waiting room while they ordered blood work, which – in my head’s defense – made me feel better.
Just about two hours (I consider myself lucky) and who knows how many thousands of dollars later, I had the CAT scan and was waiting on the results. The ER doctor came in and told me what I already suspected, “I don’t see a clot and I don’t see a bleed. I don’t see anything identifiable at the moment, but I am concerned about the headache.” In exasperation, I threw my hands into the air and exclaimed, “I knew I was overreacting!”
The doctor stopped shuffling papers, put down my charts, folded his arms on his lap and leaned forward, looking directly into my eyes. I stared back. I could feel the tears welling up, and I tried to focus on how kind and reassuring his eyes looked to me. He breathed deeply and leaned back again.
“This is your life being on warfarin,” he said, “You never know, you never can tell. You have things going on. You have things working against you and a history that does not put you in a comfortable place medically. It could have been a bleed. It could have been a clot. It could be something neurological. I would rather see you here on an overreaction than the way you were before. Nothing about this will ever be an overreaction. You’re a remarkable young lady. You have to take care of yourself and this is one of the ways you have to do it now.”
I stared at him and blubbered on about my story – my PE and everything I had been through in the last year or so – a job loss, relationship struggles, pain and fear and a loss of self that has still impacted me in a way I don’t recognize today. I don’t think I was uttering a bit of sense, but that doctor listened with all the sincerity and compassion he could. When his pager shrieked and a trauma was called out overhead, I knew he had to go; and he left me on the condition I could go home if I promised to 1) come back if my head was not better or worse in 24 hours, 2) follow-up with my doctor and 3) ask for a referral to a neurologist to hopefully get to the root of the problem. Only four hours after I first arrived, I collected my stuff, swallowed two Tylenol tablets and was discharged per the above contract.
My headache did not grow worse and lessened over the next several hours (with rest and quiet), but I am grateful I went to the ER. I followed up with my hematologist the next morning who confirmed I could never be sure with my clotting history and whether I was willing to or not, he was not willing to take the chance that I might have another clot. I might not get so lucky to survive the next time.
I left that ER feeling completely validated for even calling my doctor in the first place. I left feeling like I did the right thing and, aside from what could be going on with my brain, I actually left feeling like there was nothing wrong with me.
Today, I am passing that message of validation on to you. I know it is hard to go to the ER when you think something could – or could not – be wrong. I know money, time, effort and perceived consequences are the first thing on each of our minds. I know because it just happened to me.
I am here to tell you that if you have anything that causes you concern enough to wonder if something else might be going on, you are right in seeking medical attention. Do not not let anyone tell you or treat you differently. If you are worried due to breathing issues, chest pains/sensations, difficulty speaking or swallowing, loss of balance, headaches, nausea, blurred vision or lack of mobility – that is all the more reason to go. You never know. We just never know.
We become accustomed to feeling like we are overreacting (because sometimes nothing is wrong), like we always have something wrong (because a lot of times it is), like we are always sick or a complainer (it’s easy to let others make us think this way) and given what we have all been through (which is not to be taken lightly), our bodies and minds deserve better than that thinking. You deserve better than that thinking. Please, I urge you and I always will, seek the medical attention you need if you are feeling like something is wrong. If you aren’t an advocate for your health, there just may not be anyone else who is either; and the chance we have been given is just too previous, in my opinion, to let slip away for a second time.
Be well.
Share your story. Have you ever gone to the ER and found nothing was wrong? Something was wrong? Do you feel like you are overreacting to the point of not going to the ER? What has (or has not) changed your mind? Do you go to the ER more since your clot?
There is hope for healing and you are not alone,
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Thank you Sara ….. this is such good advice. …. I feel we often listen to others opinions more than our own bodies and sometimes our own minds ignore what our bodies try to tell us …. regarding the ER my motto is I would rather be embarrassed than dead! Glad you are better and thanx for validating what a lot of us needed to hear!
You’re welcome, Kathi! As always, thank you for reading. It is so hard to go to the ER, but I feel the same way, I would rather just go and know for sure. If I could have seen my doctor, of course, I would of, but I needed the scan so the ER it was! I know not everyone receives validation (even from medical professionals) so I wanted to pass this on.
Ty so much for this! It is exactly what I needed. I went to the ER two weeks ago. Someone dropped the ball at my doctors office and unbeknownst to me my INR was 1.6. My whole left side went numb and tingly, they thought I was having a heart attack. I don’t know why, but I just knew it wasn’t that. The feeling scared me enough to go to the ER but I didn’t know how low my INR was. I honestly believe that it was my body telling me that something wasn’t right with my blood. I cried when we went to the ER. We have no insurance and I felt so guilty about the cost. I am so glad I went though. I’ve had two PE’s and have no guarantee I would survive another. Your story made me feel better about going.
Thanks for sharing this Sara. It’s so easy to tell other people that they should go get checked out but we don’t always listen to ourselves. About 2 months ago, all of a sudden I had this piercing pain across my upper back (had never experience such pain before)…and I thought it was a pulled muscle. Several days later I had some discomfort in my chest. It was the weekend and I finally told myself it was better to go get checked out at the ER…..they wound up admitting me overnight as a precaution, but I had not clots, no bleeding, they thought it was a pulled muscle. The nurse the next day went on to tell me “if you ever get any of these symptoms you should call your primary doctor first”…to which I said I know what the symptoms are, it was the weekend, and if I had called my doctor they would have sent me to the ER anyway. She did make me feel like it was a wasted visit, but I walked away with the attitude that it’s always better to be safe than sorry.
Hi Sharon and thank you so much for reading this. I am disheartened to hear (aside from happy to hear you are okay and not facing a clot!) that you were made to feel like your trip to the ER was a wasted visit, and I want you to know I really appreciate the positive spin you have put on this both for myself and fellow readers. You are absolutely right when you say it is better to go then to wait. In my case, I waited a weekend (with my original clot) and I may not have made it another night. The ER is where I would have ended up eventually! I am glad you went to get this pain checked because I thought I pulled a muscle in my side so, as you know, the pain of a PE can present in that manner. Thanks for sharing your story and for contributing to this conversation! Stay well.
Thank you for the post Sara. Since my saddle PE in late October I have been to the ER three times for chest pains and calf pain. Each time the ER staff & my hemotologist & pulmonologist all made me feel it was the right decision (even though I felt stupid for going). Each time there was no blood clot, which is great, but the ER doctor explained the same thing to me, that this is now my normal when I am not feeling right, because it is better to be safe then sorry. I still have days my chest hurt or have trouble breathing, but still hesitate going to the ER (I try and see my pulmonologist first), but he says if he is not available go to the ER immediately. That seems to be the advice of all my doctors, and I am not one to have ever gone to ER before all this, so it is definitely something hard to get use too. There is alot to accept and get use to since my PE, I am glad I found this blog, it really helps knowing what I am feeling physically & mentally iscreal.
Hello Sharon and thank you for reading and leaving your thoughts. I am so glad you are able to find some help and support here. It is why I started this site! I am also glad you shared what you have been going through with the ER. It sounds like your medical team handles what you are facing a lot like what mine handles for me. I sometimes feel very lucky that I have such a supportive doctor who really seems to take my personal health into consideration and I talk with so many other people who do NOT have that. It really is concerning, and I wish everyone could find the support that I have. I am sorry to hear you are still struggling with pain and adjusting to yes, the new normal. I am so glad you are here! Take care.
i am not eager to allow for ER assumptions..unfortunately the night in early february i went to the UCI medical center ER with severe shortness of breath i was made to feel that it was all in my head..sure life has been stressful but i am not known for panic attacks and without health insurance at the time i was cautious of getting any medical attention of any kind for any reason..still, after spending a few hours at a Ducks hockey game with my 12 year old son frightened concerned about my inability to catch my breath i promised him i would go get it checked out..after approximately 10 hours in the ER which included a battery of test and a moment after 8 hours of convincing the physician attending to me that there was something wrong with me to go ahead and do a CT scan despite my inability to pay..he kept saying every seems to be normal and you will just have to follow up with your primary care physician..in the end he gave me a breathing treatment at my request to open my airways…and sent me home..i really thought i was nuts and sadly it had been proven by the ER dr and there was no need to see anyone but a shrink..i thought about going to work when i left UCI medical center that morning but went home instead and took a nap.. 4 hours later i was called by the hospital asking me to return because after further review i had a blood clot in my right lung..i was admitted to the hospital…thank god my scan was re-reviewed !! i have 6 kids and no desire to leave them!!! i am currently on coumadin which in of itself has been a challenge to adjust to but we finally got my dosage figured out..i am tired a lot but at least im alive 🙂 no thanks to my ER physician 🙁
Hello Janey and thank you so much for sharing your story! WOW! It is very important to talk about this side of things as well, and I want you to know I really appreciate your input. I understand a lot of factors go into going to the ER and have been there myself (wondering about finances, lack of insurance, missed work, family, etc). That is what makes this so hard, I completely agree.
I can’t (well I can, but I don’t want to!) believe you were misdiagnosed like that and I am so thankful you are here for your family and also to talk about this. I am glad the hospital got back in touch with you before it was too late and yes, thank goodness there was a second set of eyes! I wonder what prompted them to take another look in the first place or if that is standard to have a “review.”
I can see, especially with a story like this, how there is another side about whether or not it is beneficial to go to the ER. Thank you for sharing it with all of us and for joining the conversation. I know many people can relate to your story.
I love this. No further explanation necessary. Just know, we’re all in that situation at some point or another – and I love that you got the validation that so many of us lack in this situation. *hugs*
Thank you, Trysh! I am glad you stopped by. It’s so great to hear from you and yes, hugs! 😉
When I initially went to an ER because I felt like someone was choking me and I had the occasional chest pain but low energy and general feeling of being unwell (i was 35 and on birth control) they ordered an EKG but nothing else. The Dr treated me for Anxiety and told me to come back in pain persisted long that what I was experiencing.
About a month later, and still dealing with occasional chest pains, fatigue getting really bad I woke up to horrible sharp pain in my neck which made me wake up. I got up and walked around where the pain started to move to my gall bladder area. I looked up online they symptoms. It matched but I started getting SOB. By about 4 pm my boyfriend took me to another ER where they had me wait a couple of hours in the waiting room. The one male nurse was extremely rude to me. The female nurse botched my IV and treated me like I was faking my symptoms. The ER Dr came in and examined me. I could barely lay down at this point. Everywhere he pushed down made me cry out and one part he pushed down in my stomach area I screamed. They gave me pain killers which barely helped and moved me into a hallway. Finally I was sent for chest x-ray. It was confirmed that I had a medium clot in each lower lung. They then took it very seriously. I was given Heparin shots in my stomach and in the am the CT scan confirmed that I had partial infarction (dead lung tissue) of my lower left lung, and pleural effusions. I was in the hospital for 6 days. On warfarin for 6 months. My mother had been a 7 time clot survivor so when the ER Dr had stated that my blood was thick, I told him about my mom. That’s when he had sent me for those x-rays. I ended up getting Pleurisy which is excruciating and I have scar tissue. Had I not gone in, I would be dead. I deal with limitations such as bending and cannot partake in family sport events or exercise. I’m an old lady basically. I get winded and fatigue is still there after 2 yrs. The PTSD of it all haunts me and sometimes I wake up from a nightmare with the thought ” I almost died”. It’s horrible. I should have gone back to that original ER and said something, however my Lawyer is now handling it.
Hello Sofija and welcome. Thank you so much for sharing your story with us. It is so important to share a story such as yours because, you did the right thing by seeking help, and it was the ER that let you down. That is so concerning to me and I know you are not alone in that experience. I am so relieved you got the treatment you needed and deserve at the second hospital! I am so glad you are here to talk about it.
You and I have so much in common, as with many people here. I also had pluerisy and yes, I agree it was excruciating (I thought it was another PE and went to the ER for that as well). I also believe I am struggling with PTSD and adjusting to what has become the “new normal” for me. None of those things are easy. I feel that the physical limitations (such as fatigue) are still very real for me and it is something I deal with on a daily basis, as I know you and many others do too.
With your thoughts, you have in fact validated others who may be feeling the same way as you. Thank you for that and again, welcome here! Take care and I hope you are well.
Yes, the new normal. 🙁
Today is actually my birthday. I’ve celebrated 3 since my near death. I have my real birthday, and my anniversary of my PE’s is my rebirth day.
Sadly I did return a couple of times to the ER and got that same blah attitude from the other ER Dr’s but I am friends with my hero, the Dr that saved my life. He used my example to his teaching students. It was a lesson he learned as well. Thank you! Glad you are here too.
I am wishing you a very Happy Birthday!
Thank you! 🙂
Hi Sara – and other survivors!
I went to the ER end of last July with sharp pain in my back and shortness of breath. They said the chest xray was clear and it must be a muscle pain. A week later I had no pain but felt weak, went back to ER where they did xray and CT scan and found multiple bilateral PEs and a lump on my heart, so admitted me to the heart special hospital. There the lump was determined to be a benign lipomatous tumour (a lump of fat) but was there for 5 days and released on warfarin. Another week or so later I had the sharp pain and SOB again, went back to ER where I waited for about 18 hours for a CT scan and finally came home because they weren’t going to admit me. I’ve been off the warfarin for 6 weeks now and doctor says I’ll be okay (like “the new normal” – the “new okay”) if I lose weight, don’t smoke, don’t sit for long periods. I’m working on it!
Hi Margaret and welcome to our community. Thank you so much for sharing your story with us! It is an example of why it is important to seek help because, as you know, you had something very wrong that might not have turned out well if you hadn’t gone back after the first time. It is so startling to me how many people are sent home with a pulled muscle or pneumonia when it is really something very serious. For example, shortness of breath is not something to take lightly! I am so glad you are here to talk about it! I wonder how they missed the clot(s) the first time?! Interesting to think about….
Yes, I have found so much of this is adjusting to the “new” normal. I think a lot of us, myself included, are still learning what that is. I hope you continue to be well and I am also working on the changes I need to make to live a healthier lifestyle so you are not alone in that either. One of these days I plan to write about it too. 😉
One question, if I may, do they know why you clotted or are they concerned about future clotting? I am surprised you are not on warfarin – but hat may just be because I still am! Wishing you well and talk to you soon. Thank you for being here.
I had a blood clot a few recent years back and it lasted only a few weeks , then it was gone. Last October I got another clot which was as long as my whole left leg. Then a few months later (about a month ago) I got another clot on top of that one. One day the leg grew so swollen, so very hot and red and throbbing. I had no idea what was going on, but I thought it couldn’t have been good whatever it was. I went to the ER and after they took my vitals and had a quick look t my leg, asked my why I had gone to the ER and what I thought they could do. I felt sorry and embarrassed that I had gone to the ER and have never gone back since. Every time my leg gets painful and swells up etc, I just stay at home and sit it out with my family worried that something might be happening that shouldn’t be, knowing that I already had 2 clots in the one leg.
Thank you for posting this! I had a blood clot in my brain (Transverse Venous Sinus Thrombosis) in August 2013 that took an urgent care, ophthalmologist and 3 ER trips to diagnose. Each one of them told me “you’re fine, go home and stop worrying!”. Until the 3rd ER visit when they did a CT scan and found a massive blood clot that was about to hemorrhage.
2 months ago I suddenly had appendicitis symptoms. I went to the ER 3 times because I was so worried about appendicitis and it was getting worse. Each time they told me it wasn’t appendicitis. I believed them and begged my gynecologist to do a laparascopic look to see if it was maybe endometriosis. Sure enough- it was endometriosis…AND appendicitis, that was about to rupture.
Then 3 days after surgery I started having shortness of breath and calf pain. I told myself “you’re paranoid, you just had major surgery, calm down!!” and finally went to the ER…again…at 2am. Sure enough, dozens of bilateral PE’s.
After this, I’ve been to the ER twice for recurring PE symptoms and the doctors were incredibly rude and dismissive, labeling me a hypochondriac and a drug-seeker. I’m so scared about how to deal with the future. I’d be dead 3 times over in the last 2 years if I hadn’t persisted through ER doctors telling me I’m fine, but my patient file definitely looks like it belongs to a hypochondriac.
I’ve surely been to the ER way more than 99% of 31 year olds, and yes, many of those times were false alarms. But how are you supposed to know when a symptom is going to kill you or not? It’s not easy to just ignore a symptom like chest pain or blurred vision, when 5 days earlier it was the thing saved your life.
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Thank you for sharing your story. I too had a scare. I was having chest pains for 3 days and I’m always the sick one so I tried to tough it out. By the third day I was in so much pain I could barely move and when I went to bed the pain was so intense and sharp I could barely breath but I did let out a huge cry. My fiance said that’s it I’m taking you to the ER. By the time I got to the ER he had to pretty much carry me in. They took me in right away and immediately gave me enough morphine to calm me down. A few hrs later they took me in for a chest x ray and ecg tests. They at first thought it was my gallbladder then after the tests they said they figured I had a clot in my lung. They gave me more morphine and a shot of blood thinner. They then told me I had to spend the night because I had a CT scan scheduled in the morning. By 10:00am the next day I went for my ct scan and I had to wait until 4:00pm for the results. By then it was shift change again and a different ER doctor who came by and made me feel stupid for coming in. He said I had no blood clot but it was just a mere inflamation in my sternum cartilage. He gave me a doctors note and prescription for naproxen and told me to leave. Said some people have a lower pain tolerance. I’m now left with so many unanswered questions and I have to wait until my family doctor isn’t busy. How can the worst pain of my life be cartilage related when I’ve had a herniated pelvic bone and the chest pain was the worst I’ve ever felt. Now I have headaches and I feel off and scared. Anyone else can relate?
I am glad your doctor was wise and compassionate. That is not always the case. In the first year after (what my RNs termed a) “Massive” saddle embolism I was in the ED for chest pain and Shortness of Breath (SOB) quite a few times. My lungs were imaged with every possible method that year.
Unfortunately the PE exacerbated some existing heart damage and caused more so that only my Right Ventricle behaves normally. So now I am also a Heart Failure patient. But, since my arteries are clear I am told to “learn to live with” my symptoms of SOB, pain, pressure, fatigue, etc UNLESS they change from baseline.
Fast forward to worse than normal symptoms plus numbness in my left arm and a friend insisting I go to the ED. The nurse remembered my from my week long sojourn up on the floors as a PE patient (after a couple of years… impressive) but the MD (a resident) was impatient, treating me like an hysterical hypochondriac who was wasting valuable resources and his time. I was in tears (and hardly anyone who has known me only as an adult has EVER seen me cry).
Do-gooder and fellow employee that I am, I pulled myself together and when he returned to discharge me we had a chat (I chose the “This ED was going to send me home when I had the PE that nearly killed me when my cardiac enzymes came back normal” angle) and he wound up sharing his “the patient had no symptoms but…” story. I left hoping he wouldn’t do that to anyone else.
But here’s the kicker. A subsequent medical provider read my chart note from that encounter and told me something interesting. While in the ED I was throwing abnormal heartbeats -that I could feel- at an average of more than one a minute… but I was treated like it was stupid for me to come in (and the doctor didn’t bother to mention that to me). Take whatever lesson from that you like.
Thank you for sharing this. I am post PE 9 years and for the first few years I was in and out of the ER always feeling foolish because nothing was wrong. No one made me feel that way but myself. Your doctor is right, because of our history we will never be in a comfortable place medically. Always better safe then sorry. Thank yo for the work you do.
i don’t think any of the above say they were being treated for something else? I had had a really bad chest infection/pneumonia and before going to ICU was at home and taking my 6th lot of antibiotics. 8 weeks later and my 4th visit to my GP he said lets do some blood tests they came back the next day and I followed them straight into ICU!!! My good fortune was seeing the top doc for vascular stuff and said right lets bypass everything and do an immediate CT scan!!! They did and it came back that I had multiple blood clots in my right lung where I had had pain for 8 weeks. I also had pain in my neck. Stabbing off the scale pain. He managed to frighten me, unintentionally, and I said I was scared I would have a heart attack and he replied no they have already passed through your!!!! OMG!!! I am 62, live alone (a widow) and at this point my son arrives from LA (bearing in mind I live in the UK) to look after me!! My main question was anyone else being treated for a really bad chest infection like me. Something I have never had before by the way ……..and I therefore didn’t have my blood test for PE until 8 weeks down the line!!!!!!!! I could have died. I am NOT a sicky person whatsoever NEVER NEVER take to my bed NEVER BEEN out of breath oh and the other nice thing was that for nearly all of those 8 weeks I was coughing up blood mostly in mucus some on its own and some which looked like rusty bolts one would find on an old car!!!!!!!!!!!!!
I would be interested in the coughing up blood bit as no many if at all, seemed to have mentioned this. Thank you so much.