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.
This is a question that has been on my mind since the beginning of my experience. Most people don't seem to talk about this when sharing their stories, so I wonder how many actually did know for sure the moment the PE hit?
For me, I do. I did not know what exactly had happened when it happened, but I knew something strange had definitely just happened to me.
I had septoplasty to correct a deviated septum just 5 days before my PE hit. And I'm sure you'll find this part ironic, I was having it done to IMPROVE my breathing!! LOL One whole side of my nose was completely blocked off due to the deviation, and this was supposed to help open my airways. LOL It backfired on me so bad, obviously!
So, anyway, the night the PE hit, I went to bed feeling strange, but since I was recovering from nose surgery, I didn't think much about it. During that night while I was asleep, I was INSTANTLY woken by this strange sound and feeling of "whoosh", and it made my eyes pop wide open.
It was then that I realized that I couldn't breathe. It was like I had plastic wrap covering my airways and no air could come in or out at all. I sat there for several seconds trying to get air to move, and it seemed much longer than I am sure that it really was, but finally I got a cough to come out. Then I was coughing and hacking like crazy trying to catch my breathe, and the adrenaline kicked in super strong, and my heart was beating out of my chest as my mind was trying to figure out "WHAT JUST HAPPENED?!"
I had no idea!! It was very scary, obviously, but I mean, I really had no idea what had just happened, so I thought once I started breathing again that I was OK. Just "Whew, that was close!" kind of feeling.
When I tried to go back to sleep that night is when I noticed the myoclonic jerks too, and I just assumed that was just leftover jumpiness from the adrenaline rush.
Then the next morning, I realized that I had this awful heaviness that had set up in my chest, and I just felt really bad. That's also when I noticed that just walking from my bedroom to my bathroom (which are connected) was making me completely out-of-breathe.
I (stupidly) did not put it all together yet though, and was still thinking it was just part of my recovery from the surgery. I brought it up to my ENT at my Post OP appt that day, telling him that I had strange pressure in my chest and was having trouble breathing. And he said that congestion was common after that surgery, and did not do any kind of exam on me at all. Did not check my vitals, listen to my heart/lungs, NOTHING!! He just pulled the splints out of my nose, and said, "See you in a month."
So, I thought, "Well, if he's not concerned, then I guess I shouldn't be." My husband was really concerned about me though, because he could tell how much I was struggling to breathe, and he said that I was "white as a ghost".
I still waited a couple of more days hoping that I would just magically start feeling better. Since I have a pulse ox monitor at home (because two of my kids have asthma), I was keeping a check on my numbers and knew my oxygen was going to the low 80s and my heart rate was shooting to 150s/160s every time I'd walk across the floor (but would return to fairly normal as long as I was resting), so I knew something was not right. Still would have never guessed PE, though.
So, I had the PE on 3/22/15, and FINALLY went to the ER 3/26/15 and that's when I was officially diagnosed with multiple large bilateral PEs and started on blood thinners, and I was in the hospital for 6 days.
We decided against the clot busters because they said that there was such an increased risk of brain bleeding with it, and I didn't want to risk anything else scary happening. I figured slow and steady was the better option for me, because my body just does not respond well to anything, it seems.
It was that first night in the hospital that I had finally put the pieces together and realized that the strange moment night's before where I woke up unable to breathe was obviously the moment the PE hit!! And I felt really stupid for not taking it more seriously then!
So, I just wonder, do you guys have a clear moment like that too? Or was your PE onset more gradual. It's actually been very terrifying for me the more I think about it, because I clearly know the very moment that could have been my last, and I don't know WHY I started breathing again, but WOW, just I'm so thankful that I did!! Even though my recovery has been tough, I have not taken that for granted in the least.
For me, I do. I did not know what exactly had happened when it happened, but I knew something strange had definitely just happened to me.
I had septoplasty to correct a deviated septum just 5 days before my PE hit. And I'm sure you'll find this part ironic, I was having it done to IMPROVE my breathing!! LOL One whole side of my nose was completely blocked off due to the deviation, and this was supposed to help open my airways. LOL It backfired on me so bad, obviously!
So, anyway, the night the PE hit, I went to bed feeling strange, but since I was recovering from nose surgery, I didn't think much about it. During that night while I was asleep, I was INSTANTLY woken by this strange sound and feeling of "whoosh", and it made my eyes pop wide open.
It was then that I realized that I couldn't breathe. It was like I had plastic wrap covering my airways and no air could come in or out at all. I sat there for several seconds trying to get air to move, and it seemed much longer than I am sure that it really was, but finally I got a cough to come out. Then I was coughing and hacking like crazy trying to catch my breathe, and the adrenaline kicked in super strong, and my heart was beating out of my chest as my mind was trying to figure out "WHAT JUST HAPPENED?!"
I had no idea!! It was very scary, obviously, but I mean, I really had no idea what had just happened, so I thought once I started breathing again that I was OK. Just "Whew, that was close!" kind of feeling.
When I tried to go back to sleep that night is when I noticed the myoclonic jerks too, and I just assumed that was just leftover jumpiness from the adrenaline rush.
Then the next morning, I realized that I had this awful heaviness that had set up in my chest, and I just felt really bad. That's also when I noticed that just walking from my bedroom to my bathroom (which are connected) was making me completely out-of-breathe.
I (stupidly) did not put it all together yet though, and was still thinking it was just part of my recovery from the surgery. I brought it up to my ENT at my Post OP appt that day, telling him that I had strange pressure in my chest and was having trouble breathing. And he said that congestion was common after that surgery, and did not do any kind of exam on me at all. Did not check my vitals, listen to my heart/lungs, NOTHING!! He just pulled the splints out of my nose, and said, "See you in a month."
So, I thought, "Well, if he's not concerned, then I guess I shouldn't be." My husband was really concerned about me though, because he could tell how much I was struggling to breathe, and he said that I was "white as a ghost".
I still waited a couple of more days hoping that I would just magically start feeling better. Since I have a pulse ox monitor at home (because two of my kids have asthma), I was keeping a check on my numbers and knew my oxygen was going to the low 80s and my heart rate was shooting to 150s/160s every time I'd walk across the floor (but would return to fairly normal as long as I was resting), so I knew something was not right. Still would have never guessed PE, though.
So, I had the PE on 3/22/15, and FINALLY went to the ER 3/26/15 and that's when I was officially diagnosed with multiple large bilateral PEs and started on blood thinners, and I was in the hospital for 6 days.
We decided against the clot busters because they said that there was such an increased risk of brain bleeding with it, and I didn't want to risk anything else scary happening. I figured slow and steady was the better option for me, because my body just does not respond well to anything, it seems.
It was that first night in the hospital that I had finally put the pieces together and realized that the strange moment night's before where I woke up unable to breathe was obviously the moment the PE hit!! And I felt really stupid for not taking it more seriously then!
So, I just wonder, do you guys have a clear moment like that too? Or was your PE onset more gradual. It's actually been very terrifying for me the more I think about it, because I clearly know the very moment that could have been my last, and I don't know WHY I started breathing again, but WOW, just I'm so thankful that I did!! Even though my recovery has been tough, I have not taken that for granted in the least.
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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.
But I clearly remember getting up on a Sunday morning in late January and feeling pretty good. About 45 minutes later, I got this strange choking feeling (felt like something was wrapped around my throat) and I was suddenly severely SOB. The SOB lasted all day, despite me doing nothing but lying on the couch. That night, I went to a minor emergency clinic. They sent me home, telling me my asthma was uncontrolled. I came home and cried, just knowing that WASN'T it but not knowing what it WAS (despite having clots before, although none made it to my lungs).
24 hours later, I was admitted to the hospital with multiple bilateral PEs.
So, yeah, I do kind of have a feeling for when things suddenly became a big deal. There was a clear switch in my head on Sunday morning for before and after. Even though I think I may have been throwing small, minor clots for the whole month, I also think there was a definite point when a LOT of clots hit.
Of course, even though I had a clotting history, I was in serious denial about the possibility of clots in my lungs. Going to the minor emergency clinic, I even thought about leaving the clotting history off my intake form so they could focus on the "real" problem. Ha! I did put the clotting history on the form and they skipped right over it and went for the asthma... which wasn't it at all. Looking back, it is silly how far my head was in the sand. But I made it through, so that's what is important!
But you really don't think it's the worst, and the brain has an amazing ability to rationalize things. I had only barely even heard of PE before too, so it was NOT on my radar. I was thinking asthma or pneumonia...who knows. Just not something as serious as PE, for sure! LOL
My husband was trying to get me to go to the ER for days, and I just thought he was crazy. LOL "Nah, I just need a little more rest, and I'll be OK." LOL
I knew that there was something wrong with my chest but the thought of a pe just wasn't there. I had the same weakness & inability to breath & also the same thing whiteness. I had a few docs ask me why I was glowing white. Lol. I actually went to the doctor 3 different times before I ended up in the ER. I had a chest X-ray & was diagnosed with pneumonia twice & felt it was wrong because I am unfortunately familiar with it. 3rd time was for a broken toe. I have no memory of how I ended up in the ER. This all started on Friday and I wasn't admitted until Tuesday or weds. The only way I know anything about that day was a Facebook status saying I was there for a possible collapsed lung and later saying not a collapse but a PE. No matter how hard I try I just can't remember. I do know that I wasn't given an option on the clot busters and was really surprised to read that there were options and that clot busters can cause brain bleeds..
Oddly, I had much more trauma a few days later when I developed a severe infection that killed a piece of my lung, but I remember that! The PE hospitalization seemed so relaxed, ok this is what you have, this is what we're doing, ok now go home after 3 days. I was in no position to ask & they didn't offer any other info.
Oops gotta go
But yeah, I feel like even for my first "PE event" I knew exactly when it happened, although the first time I didn't realize what it was.
A few hours after my son was born in a very difficult delivery, I was talking to a friend on the phone when I suddenly felt like I had been punched in the chest and I immediately had some difficulty breathing. Even my friend heard that I was having trouble breathing, and we quickly got off the phone so I could call my nurse. The nurse immediately called the doctor, and unfortunately it wasn't my doctor I was used to who came, but a woman with a horrible bedside manner. She listen to my heart for approximately 2.5 seconds and said everything was fine and she didn't know why I was complaining. Because I had also reported I had terrible pelvic pain, which I also in hindsight believe was the DVT - all I know is it was pain unlike anything I experienced after my first son's delivery.
When I was discharged, I told that doctor I was still having trouble breathing, and she just gave me an inhaler (though I had never had asthma in my life) and said not to worry about it.
The cardiologist who ultimately treated me also believed that I had PE from that time forward. But my O2 wasn't low or anything at that point, even though I continued feeling short of breath for the following weeks.
Three weeks after delivery my leg started hurting, and due to something the wellness nurse who had come to check on me and the baby had said, I almost immediately was afraid it was DVT. Unfortunately, no one else agreed with me, including an ultrasound and although I tried several times over the next week to get medical attention, everyone kept telling me I was fine. My family started to believe I had lost my mind, I think, and I was beginning to even question myself.
My last ER trip was only hours before I know for a certainty that the clots embolized really badly, the doctor again assuring me I didn't have a DVT. I had gone home, feeling defeated and frustrated and exhausted. I mean, when that doctor told me to go home, I just sat there dumbstruck because I had this sense of urgency by then and felt if I went home I'd die. And I don't know why, specifically, I felt that way. I was still at that point okay in my O2 levels and didn't feel any worse for my breathing, I just had a sense of dread.
Anyway, I got home a little after midnight from the ER, went to sleep, and awoke from a really strong "punch" feeling to the chest at around 3am. I could only take tiny breaths from that point, and I had terrible pain up in my shoulder. Basically I thought I was going to die right there, or else my family would be committing me to a mental hospital the next day. I mean, honestly I was so confused by everyone constantly telling me I was fine that I seriously questioned myself and what I was feeling. I remembered wondering whether I could get an imaginary PE from an imaginary blood clot.....
Next time I showed up in the hospital they took me seriously. I guess all's well that ends well.
I think when you're reasonably healthy, it never really occurs to you something so dire is going on. I mean, I'd heard of pulmonary embolism but it was not the first thing that crossed my mind. Hey, it wasn't even the first thing that crossed my doctor's mind.
I do want to say that the experience you describe will run through your mind for quite a long time, because it's so hard to believe it not only happened to you, but that you survived it. But with time, the terrifying aspects of it soften a bit and you'll be able to look at it more like, hey remember that time when I had a PE, similar to, hey remember that time we went to Niagara Falls. It's weird how it becomes more like other events in your life, just something that happened. But I will say that I still am aware of how lucky I am and so grateful to be here. That part kind of stays with you.
I think the reason why I'm even curious about this topic is because I still feel so silly knowing now how obvious it was that something was terribly wrong with me, yet my brain denied and rationalized it so much at the time.
But, yeah, definitely by reading all of your stories, I shouldn't feel so bad if even all of these docs missed the obvious signs too. :)
So glad for each person that has shared their story, because being ABLE to share your story is a true miracle in itself!!
The next day I was home alone, no work, no school (I worked at my college BTW, no work or classes for me on Fridays so I was home while both of my parents were at work). I remember I was watching TV and eating a healthy breakfast of potato chips and Diet Pepsi when the shortness of breath came back. I was nervous and shaking, figured it was a panic attack and tried to take a shower to help open my airways. Nothing helped, and well, everything else happened after that.
It was scary, but I could definitely tell exactly when it hit both times. My doctor said that the first time it happened at work was probably a small clot that ended up resolving on its own, but the next ones got stuck because of the previous ones causing scar tissue and blood buildup. Certainly scary, but happy I'm way passed that time!
When I look back, I think the PE first hit me on September 14th. I had been diagnosed with a minor urinary tract infection the previous Sunday and was back at the ER to have the results of an ultrasound taken earlier that week. Through a mix-up, I ended up waiting several hours at the ER and, suddenly, I had that really sharp pain in my right flank. The doctor ordered a lung X-Ray, but nothing showed up.
The next phase began that Sunday, a week prior to diagnosis, when the same time of sharp pain hit my right shoulder. Then, throughout that week, I would have these sharp pains on my right side: shoulders, flank. upper back. And high fever in the evening. But all would clear up in the morning.
That week, I was busy packing at work, as we were moving two floors down, so I put down a lot of those pains to a mix of the UTI healing and muscle pains from all the physical strain.
That Friday, day before diagnosis, I finished packing everything (foresight?) and had just gone up to my File Room (hate that place!) to put away these very sensitive documents that had been accumulating at my desk. I was in the midst of doing that, when the construction workers triggered another fire alarm. So, I rushed to lock away the remaining documents and rushed down the stairs to my office to pick up my purse. Thankfully, I'm on the mobility impaired list thanks to back knees and back, so I waited for the all clear to come (it was a false alarm, again).
Then, my colleague and I decided to visit our new quarters, two floors down. The climb up the stairs had me a little more out of breath than usual and I remember saying that I was more out of shape than I thought. It was the first experience with SOB, and it was mild. About thirty minutes, I had excruciating stabbing pains at breast level, on my left side. Tylenol didn't help at all and I was worried I may be having a heart attack.
That evening, the pain was so back that I Tylenol 2 or 3 I had from previous visits to the ER. Went to sleep and woke up 2 hours later in excruciating pain, so I took so Morphine I had. Went back to sleep.
The next morning, I couldn't breathe as I was preparing coffee. I figured it was probably due to the mix of meds. I laid down on the couch, rested and was OK. That afternoon, I was putting away a huge walker in the car to take my MIL to the store. And that time, I couldn't breathe, almost fell and it took me 15 to 20 minutes to recover.
I, eventually, headed for the ER where I was rushed in as O2 was at 81. At first, they thought it was pneumonia but still ordered a CT scan. That's when I was diagnosed with massive, bilateral PE, including a very large clot.
I did run searches all through that week, but, I guess, because the SOB symptom was missing, and the pain was all on my right side, the only thing that came up was UTI and Gall Bladder issues.
Where the PE is concerned, I knew what it was, because my dad is one of those who did not survive. But, it never dawned on me that that could be what was happening to me.
My daughter was born in September and I had already told the midwives that my sister had very recently had a DVT during pregnancy so I knew I would have a Clexane shot before leaving hospital with my baby. However, when I mentioned it the nurse went off to speak to a doctor and came back and said the doc thinks it's fine for you to go home without it. Fine, I thought, it's not like I would have a clot just because my sister did and my pregnancy was over now anyway.
On those next few days at home my arm was pretty sore and there was a red lump where the canula for the epidural had been. I mentioned it to 3 different midwives who all looked at it and said just an irritation and would be fine. All good. I felt tired, dizzy and overheated and also mentioned this. Just the usual woes after having a baby they said. Ok.
2 weeks after the baby was born I was complaining constantly about trapped wind. It hurt a little but was more annoying than anything. It was constant and I was belching as much as possible trying to relieve the annoyance but with no luck. I got some over the counter remedies for trapped wind but nothing worked. On the saturday night I went to bed quite uncomfortable and was woke a short time later with pain radiating towards my shoulder. It was so sore that I went downstairs to my partner and sat crying because of the pain and also that now I couldn't catch my breath properly. He assumed I was just overwhelmed by the new baby and the trapped wind causing problems so told me to go get some sleep so I made my way to bed in pain and crying but thinking he was right. As I tried to lay down the pain got worse so I kind of knelt on my bed and put my head on the pillow and somehow fell asleep. Woke up next morning a little better but still uncomfortable so I suggested I would ring the out of hours doctor and see if they could prescribe something stronger for this trapped wind I was having. Luckily they suggested coming for a checkup just to be sure because I had just had a baby and they felt it would be safer just to have a quick check up.
So we put the baby in the car and went to out of hours expecting to be 20 mins or so but due to the care of the doctor on duty that day, we ended up on a ward having tests as the first doctor automatically thought PE due to the obvious pain in my shoulder when I lay down for her to examine me. 8 hours later I was diagnosed with PE to the shock of the doctors on the ward. I had been in good spirits the whole time I was there and they admitted after the diagnosis that they did not think I had a PE but did the tests simply because they HAD to because of how I initially presented at the out of hours clinic.
SO much emphasis was put on my leg being the source of the DVT even though I had no signs of a DVT at all that I could recall. I had even mentioned my arm to a nurse on the ward upon admittance that first day but only in passing conversation about the recent birth and she had a look and said it was Phlebitis. It was only months later that I put it all together and realised that the reason I had no signs on a DVT in my leg (which to be honest had me really scared as I thought I'd end up having another DVT at some stage and not know it was there) was because it originated in my arm. Now that I know that's where it started, I am a little more confident in recognising the signs of a DVT but to be honest the actual pain and breathlessness has me worried that I wouldn't automatically think PE because in my experience it wasn't as painful or as severe as I would have expected a PE to be. I just hope that if it does ever happen again that I will be more cautious and not leave it so long before seeking medical attention.
When i had my second PE occurred i had a similar experience where i woke with massive chest pain and an awful sense of doom. For some reason it did not occur to me that it may be another PE. I had been told the first was due to pregnancy and i wouldn't get another one so long as i didn't get pregnant again (wrong)
I went to the doctors the next day and was admitted to the hospital later that day. I was met by the head of the ED department who was stunned i was still walking around. My notes on this admission read simply PULMONARY EMBOLISM. I was kept in hospital for about 3 weeks as it took some time to stabilise me.
I very rarely talk about that day because of the memories associated with it. I have often wondered if anyone else knew the exact time they developed a PE. I even spoke to my dr about it once. it took me quite a while to be able to write a reply to this post simply because even now the memories are so incredibly clear that i find it difficult to revisit them
Thank you for sharing your stories. Gosh, I'm so sorry you've gone through something so scary MULTIPLE times. :(
For me, it is healing to some degree to hear that other people can relate somewhat to what I've been through, since no one in my real life can really imagine.
I just hate, hate the fear that I know you have lived through though!! (((HUGS)))
For about a week I started to have these sharp pains go up the middle of my back on inspiration.
At the end of that week, Saturday morning I woke up, just not feeling right, but nothing specific. My sister was coming over to draw some tattoos on my cast. After she was done and left it was about 10:45, it hit, I couldn't catch my breathe, my pulse started racing, my vision started swimming. My husband was upstairs sleeping (worked the night shift), the kids were in the living room. I still had enough stupid wits or I was already so lack of oxygen I was making stupid decisions, I managed to scoot, my way past the kids so I didn't "worry" them and then crawl up the stairs. I was apologizing to my husband, I thought I was having an asthma attack. He immediately recognized what was going on and got me downstairs. He put me on oxygen and loaded me in the car. If he would have called for an Ambulance I would have died as the nearest hospital would not have been able to save me. I had a massive saddle PE. Once I was at the hospital I coded once and they were able to bring me back. That was two and a half years ago.