The Personal Health Navigator is available to all Canadian patients. Questions about your doctor, hospital or how to navigate the health care system can be sent to AskLisa@Sunnybrook.ca
The Question: I was diagnosed with an unprovoked saddle pulmonary embolism at the end of January after three months of antibiotics, inhalers, a chest X ray and a CAT scan. I am now taking warfarin and have my INR monitored every two weeks [dose varies between 12.5 mgs and 15 mgs – last INR result was 1.8]. Prior to my P.E. diagnosis, right up to the present time, I am experiencing chest pressure and tightness intermittently in the upper left side of my chest, towards the sternum. This symptom is not related to any activity. I have read anecdotal patient reports on the internet about post P.E. chest pain that continue for a month sometimes up to a year. I have been told that my chest pain is not connected to my P.E. In addition, I have been advised that I am at risk for having another unprovoked P.E, which I would not survive. Should a thrombosis specialist closely monitor me? I am presently under the care of my General Practitioner.
The Answer: You are a very well informed patient and yet, as you have found out, the more you dig into this complex issue, there are even more questions that require answers. A Google search on pulmonary embolism yielded more than 4.9 million hits. As you know, a pulmonary embolism occurs when one or more arteries in your lungs are blocked, typically from a blood clot that has travelled from another part of your body, almost always the legs. It is a complication of deep vein thrombosis. Signs and symptoms include unexplained shortness of breath, a cough that may bring up sputum laced with blood, in addition to chest pain. It must be treated quickly to be lifesaving.
In your case, it is quite common to feel discomfort in your chest after a pulmonary embolism. The amount of discomfort varies from patient to patient, according to Bill Geerts, a thrombosis specialist at Sunnybrook.
“There is actually an entity that we call ‘post-PE syndrome’ which is not well described in any medical literature but that all thrombosis specialists are familiar with,” Dr. Geerts wrote in an email. “It’s usually mild and there is no specific treatment for it, just time and exercise.”
Though your dose of warfarin – 12.5 mgs and 15 mgs – is higher than average, according to Dr. Geerts, it is well within the range of doses that thrombosis specialists would see patients prescribed.
“The actual dose of warfarin is not relevant – the only measure that counts is the INR,” said Dr. Geerts.
[The INR is a test of blood clotting, which requires a small tube of blood from a vein – approximately 4 milliliters – used primarily to monitor warfarin therapy.]The target INR for pulmonary embolism is 2.0-3.0. Put another way, an INR of 1.8 is not acceptable, according to Dr. Geerts.
You also seemed worried about being at risk of a second pulmonary embolism. That is only the case if you were not taking anticoagulants, in fact, you are virtually at “zero risk” of a recurrent episode so long as you are taking the medication and your INR is in the target range. Even if you had a second pulmonary embolism, there is nothing to suggest you would not survive again, as you had suggested, said Dr. Geerts.
It sounds as if you have already spoken to your general practitioner about the chest pain and had a heart problem ruled out. However, you know yourself better than any one. If your symptoms became more acute and worrisome, I hope you would seek immediate treatment if you felt it was a medical emergency.
In the meantime, you should think about seeing a thrombosis specialist. You will want to discuss the duration of your anticoagulation therapy, make sure that the specific anticoagulant you are on is the best one for you and answer any other questions you may have.
Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts. Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre. Send questions to AskLisa@sunnybrook.ca.
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I was just diagnosed with multiple small or in my right lung four or five days ago. I have had off and on chest pain in both sides. The CT with contrast did not show anything in my left lung. I am on Eloquis now, and was told it would be hard for me to off of the drug. My question is when will the pain go away?
Hope all are well.
I suffered a P.E at the age of 25 and I am now 32yrs old.
I have struggled with tightness in my chest and a struggle with my breathing as it hurts to breath in and tightens as I breath out.
I unfortunately was unwell at the time and missed days of the 2 years almost that I was taking Anti-coagulant medication (Warfarin).
The Blood-Clot was in my ” left lung lobe “!!. There was no answers as to why this happened to me and even if the clot had fully broken away and I was not told that I was fully well enough to carry on as normal (which is what I did!?.) and almost forget about it.
I do not feel I ever fully recovered from the P.E and I was never given any information after taking the last warfarin tablet and was not advised about my life there on. I find this sad and I should have done more to find out but I was under psychiatric care being very unwell (mentally and physically) Can anyone HELP! give me any INFORMATION on if I should do something about my past bloodclot that left me unwell physically and mentally with no understanding of how to get answers. Thankyou in Advance for any supporting advice.
My name is Yolanda
I was diagnosed with Pulmonary Embolism last year December and I’m on Warfarin for six months..and my INR is 1,6 .
I have had 2 pulmonary embolism, the first one was in May 2015 and they could find no cause for it, it speckled both of my lungs with blood clots like confetti and my cardiologist said it was a miracle I survived it.
My second pulmonary embolism was in February 2019, it was brought on by a DVT. The University Hospital in New Orleans said it was the largest saddle embolism they have ever seen anyone survive. The pulmonary specialist actually told me that they don’t understand how I was alive because it was so large and that I have become a teaching case because of it.
They considered using clot busting drugs but decided not to since my heart seemed to be functioning properly without undue stress.
In October of 2019 my cardiologist ordered a nuclear stress test because of continued chest pain. They discovered I had a heart attack sometime between February and October and part of my heat was dead, I have no clue when it happened and never noticed a difference.
I was also diagnosed with moderate to severe pulmonary hypertension at that time.
I have always worked as a laborer and because of the lack of oxygen exchange in my lungs I have been unable to do the jobs I have always done.
I had a lung capacity test, and they determine that although I was a 53 y/o smoker, I had the lung capacity of a 30 somethings non smoker. This was part of the determination for pulmonary hypertension. I was able to bring the air into my lungs, but my lungs are not able to convert it during physical exertion. Which causes harder breathing and my heart racing starting 3-5 minutes after any kind of physical exertion.
There are way too much stuff on the internet about life expectancy under such conditions.
I have been trying for over a year to get disability. I tried driving for Uber and Lyft and not only went broke, but lost my only transportation because I had taken a loan on my vehicle to try to get by on while waiting and hoping for disability.
My doctors didn’t want me driving to earn money, but my choices were limited because of my job history.
Anyway, I went broke while driving 16 hours a day for Lyft and Uber, and was unable to make my loan payment on my vehicle, and it was repossessed by the loan company, I tried renting a vehicle through Lyft to keep working, but after a couple of months I couldn’t earn enough to maintain the rental, because they paid less when you rented the vehicle and took the rent for the vehicle first out of your pay. I ended up owing them for driving for them!
Anyway, just wanted to relate my story so that people understand how difficult going through something like this is.
I am now on medicaid and food stamps still hoping to get disability and have to explain to my doctors why I can’t make all of the appointments they want me to go to because I don’t have transportation. I have a Transthoracic Echo appointment for the end of this month that I am not sure I can make, but I am trying to borrow a car or find some other means.
I wish everyone better luck than I have been having.
Hi, i too have had severe left side chest, shoulder pain following a unprovoked PE February of 2020. I had made several trips to ER during the next few months that followed, fearing that i was having heart issues or more PE. I have been on 5mg. of Eliquis twice a day since my original diagnosis and will be throughout my life. All my ER trips included an ECG, blood work and xray. After each trip i was told i was fit and well. Slowly i started feeling better and 9 -10 months later i regained more energy an less bouts of discomfort. I also started living my mediochre lifestyle of limited activity at the age of 72. I tried to be careful regarding heavy lifting etc. as it seemed major exertion would cause slight bouts of reoccurring pain. Just as i thought things were getting slowly better, i was struck with a major family crisis. Now a year after my initial PE diagnosis, i have made two more trips to ER again with the same left sided chest, rib, shoulder pain. Today was exceptionally bad, as i was even short of breath, and blood pressure a bit high. The pain struck me in the back left shoulder as i stood up and i was hoping it was a pulled muscle, but went to ER as it wasn’t subsiding. All the tests checked out OK. Came home an slept. Very tired. I have had a complete cardio check done seven months ago, and all OK. I am having a MRI done next week, so we’ll see what comes of that. My only other question as to the cause, is it stress related or could it be tied to my miagraine medication? I wake up frequently with headaches an take a 5mg rizatripan to keep them from getting worse. The last 24 hours i have taken 3 – 5mg rizatriptan approximately 6 – 8 hours apart. ER Dr, felt that it shouldn’t have caused my symptoms but to record, which i will do.
Interesting reading, I am in the same boat as you say. But I stopped taking warfarin many years ago after a second apinion, this happened 2012, anyways just had a second bout again, clot in leg groin and both lungs and in a recovering state, got that little pain in my chest that comes and goes, now I’m taking Rivaroxaban and it will be the rest of my life.
Gary
Hi Kyla,
I was just diagnosed with blood clots 1 in each lung. My doctor told me that I would probably have to stay on the blood thinners for life because once you develope them , you are now prone to getting more. Speak to your doctor , maybe see a pulmonologist. Definitely get checked if you are having the pain again and especially if you get short of breath. Praying for you and everyone
Hi Melissa. I’m so sorry about your daughter. I don’t understand why they would put her on naproxen while on blood thinners. That’s the first thing I read that I can not take while on them. Sounds like the doctors really screwed up. Or maybe I’m confused about what you wrote. But either way praying for your daughter
Thanks for sharing your story. Sending you prayers from Long Island, NY
So glad to find this site and read all these stories in July 2020 I became sick with headaches, fevers, chills, achy muscles, fatigue. It kept getting worse then my chest started bothering me..burned, hurt, felt tight . I am a 6 day a week runner also, fit and healthy. Couldn’t climb an uphill one Saturday 10 days into feeling awful …that Sunday night rib pain and shoulder pain so bad couldn’t sleep laying down by Monday morning called my doctor told them what was going on and when I mentioned my ribs and shoulder and back hurt they asked if I had lifted something too heavy or fallen down … I told them all my symptoms ….fever, chills, headaches, fatigue and now this pain in chest, ribs, back and because of COVID they wouldn’t see me but sent me to the urgent care. They did a chest X-ray said I had double pneumonia with fluid around my lungs put me on two antibiotics and sent me home. 5 days later still with worsening fevers, dripping night sweats and chest pain, headaches, back, rib pain called doctor on Saturday, sent me back to urgent care, another chest X-ray revealed that I had gotten worse and shouldn’t have on the two antibiotics they said. they sent me to the ER . More tests done and a chest c t scan revealed I had numerous pulmonary embolisms in both my lungs, one doctor described me as “loaded” another said “ you have a really good case of it” and another said “ numerous in both lungs”. they were partially collapsed and had fluid around them. They said it was never pneumonia. They told me they were unprovoked embolisms … I had no family history, was a healthy fit person never had smoked, wasn’t over weight, a runner, don’t sit, very active and strong, hadn’t traveled, they did ct scans and ultrasounds of almost my entire body looking for malignancies and found nothing that they thought could have caused it. I had no DVT’s. I explained my illness for 10-12 days leading up to it but they just said it was unprovoked… I wonder if it wasn’t COVID. They had me in the hospital on heparin for the weekend. Then sent me home on Eliquis which I have been on since ( just about six months) . Two days after being sent home I collapsed at home and went back to the ER where they told me after putting me in a room by myself without even a blanket and sitting with chills and a fever two hours they came and told me I looked great, I could go home and sent me out to the waiting room to wait for my ride to come pick me up. I was seen by my PCP a week later and since then have not had one test or doctor see me. I was told when my eliquis is gone I am finished, to just stop taking it. I am about finished with my last bottle. I still have discomfort and chest pain and fatigue every day. Today and yesterday were a struggle some days worse than others it seems that when I overdo I really pay for it. I do a lot! my doctor told me I could push myself and to keep moving during the one and only visit I had with a doctor after leaving the hospital. I also say I want my body back and wonder if and when I will feel like “ my old self” again. I run and walk and exercise as my doctor told me to do what I wanted after I got out of the hospital but it is harder and slower! It wears me out and never did before. I wonder if I will ever feel as strong as I did and will this chest discomfort and pain in it and the fatigue ever go away. I also feel so left to myself by the medical profession with no answers and no follow up and so I worry what is wrong with me ? Why aren’t I better yet? These stories and ones like yours make me feel like I am not a hypochondriac ( and I know I am not. I hardly ever needed a doctor prior to July and rarely was sick) and this isn’t all in my head!
Hello Nichole and all on this thread. My husband has been dealing with chronic debilitating pain since his first PEs in 2014 but it has progressed significantly and affects his daily living severely. He has had many procedures and even has a spinal cord stimulator now which gives him about 25% relief but not enough to provide quality of life. I would love any advise from anyone on this thread and/or a support group we could join?
Thanks all, wishing you best of health,
Hello Dawn,
I came across your post from 7 years ago today after continued research for my husbands post PE pain for 6 1/2 years. It is now progressed to being fairly debilitating. He has has many procedures over the years including a spinal cord stimulator and he is still in chronic pain that affects his life significantly. I was hoping that maybe you still monitor this site and could reach out to me about any successful treatments you may have had and if you are still in pain or not. Thank you!
Tamara
bearfeet18@hotmail.com
I was put on Tamoxifen for,about three months after my breast cancer, to block estrogen.When my oncologist was notified, he immediately wanted me to stopped when I told I had had Pulmonary Embolism and a DVT in my right left knee.
DBT. I was put on Xarelto immediately while in the hospital, they dismissed me a few hours later.
I had been taking an Aqua Fit class,, for several classes,,and my thoughts that I had pulled muscles
around my chest and back, slowly got worse. One night was really back, off to the hospital, i was taken.
My question is: It’s been 5 months, and am still suffering from twinges of pain. Is this normal or should
I go back to the hospital?
I was put on Tamoxifen for,about three months after my breast cancer, to block estrogen.When my oncologist was notified, he immediately wanted me to stopped when I told I had had Pulmonary Embolism and a DVT in my right left knee.
DBT. I was put on Xarelto immediately while in the hospital, they dismissed me a few hours later.
I had been taking an Aqua Fit class,, for several classes,,and my thoughts that I had pulled muscles
around my chest and back, slowly got worse. One night was really back, off to the hospital, i was taken.
My question is: It’s been 5 months, and am still suffering from twinges of pain. Is this normal or should
I go back to the hospital?
I collapsed at work in November 2018 with what I (and the Paramedics) thought was a heart attack. It turned out I had a massive saddle embolism resulting in clots in both lungs. It was unprovoked; no risk factors so I’m now on blood thinners for life (Xarelto). I was initially told 6-8 weeks recovery, which was clearly BS.
2 years on and I am still experiencing shortness of breath and tightness/pain in my chest. I could run 5K, even 10K, before the clot episode. Now I am just about able to run 1K on flat road. Walking up my drive pulling a garbage cart leaves me breathless. I have a pretty much constant ache on the right side of my chest, even just sitting. The ache turns to pain with exertion.
I have been referred back to specialists … x-rays were normal; echo was normal; ECG is normal … Another VQ scan showed scarring of the lower lobe of my right lung but a follow up CT showed nothing ‘significant’. A bone scan showed swelling of my sternum so I was diagnosed with unexplained costochondritis. Doctors could not explain the breathlessness or chest pain. Lung function test was normal (above average in fact); myocardial perfusion scan was normal; stress test was normal ….. a specialist has now suggested right and left heart catheterization as the next possible step.
I can’t really fault the efforts to try to get to the bottom of my symptoms and the testing I’ve had. At this point, however, I do feel the doctors and specialists see all the normal imaging and test results and think I am imagining the symptoms and they are in my head. I know they are not! It’s frustrating not having an answer but I really don’t know if there is much point doing the more invasive heart catheterization test. It hasn’t really been explained what this test might show that all the other tests have failed to show. I’m really at the point of just accepting the fact I will live with unexplained breathlessness and chest pain from now on.
After having a big clot in each lung in 2015 I was having chest pain on and off for about 3 years .
After nearly two years of those attacks being 6 months apart it has changed .
In the last 2 months I have had tightness in my chest and have been short of breath and any exertion makes it worse down to pain radiating into and down my arms…sometimes .
After a visit to emergency they diagnosed Pulmonary Hypertension and I’m waiting to go in for tests to confirm .
However that’s most likely what it is after a process of elimination .
I would ask the question , is it possible I have Pulmonary Hypertension ?
I collapsed at work in November 2018 with what I (and the Paramedics) thought was a heart attack. It turned out I had a massive saddle embolism resulting in clots in both lungs. It was unprovoked; no risk factors so I’m now on blood thinners for life (Xarelto). I was initially told 6-8 weeks recovery, which was clearly BS.
2 years on and I am still experiencing shortness of breath and tightness/pain in my chest. I could run 5K, even 10K, before the clot episode. Now I am just about able to run 1K on flat road. Walking up my drive pulling a garbage cart leaves me breathless. I have a pretty much constant ache on the right side of my chest, even just sitting. The ache turns to pain with exertion.
I have been referred back to specialists … x-rays were normal; echo was normal; ECG is normal … Another VQ scan showed scarring of the lower lobe of my right lung but a follow up CT showed nothing ‘significant’. A bone scan showed swelling of my sternum so I was diagnosed with unexplained costochondritis. Doctors could not explain the breathlessness or chest pain. Lung function test was normal (above average in fact); myocardial perfusion scan was normal; stress test was normal ….. a specialist has now suggested right and left heart catheterization as the next possible step.
I can’t really fault the efforts to try to get to the bottom of my symptoms and the testing I’ve had. At this point, however, I do feel the doctors and specialists see all the normal imaging and test results and think I am imagining the symptoms and they are in my head. I know they are not! It’s frustrating not having an answer but I really don’t know if there is much point doing the more invasive heart catheterization test. It hasn’t really been explained what this test might show that all the other tests have failed to show. I’m really at the point of just accepting the fact I will live with unexplained breathlessness and chest pain from now on.
I am on eliquois 5mg. Twice a day..and have AFib.and on lopressor also. Am I considered safe from having another embolism in both lungs. Please explain
I was told in 2017 that I had multiple extensive clots in both my lungs, I was 21 at the time and am now taking Xarelto for the rest of my life. 6 months after I was diagnosed I went to a lung specialist to do a lung function and stress test which came back normal. Over the years I’ve gone to back the ER with chest complaints and had X-rays, CT scans, a VQ scan, and ECGs performed which were all normal. 3 years later I’m still dealing with symptoms. My main complaints are that when I do something that’s physically straining on my upper body (eg. making the bed, lifting heavy objects, bending over) I get out of breath and get chest pain on the left side right over where my heart is.
I’ve brought this up with my new Dr and so far in the past year shes had me do a basic lung function test which was normal, I’ve also had another ct scan which was normal. The next thing to try will be physical therapy that I’ll go to once the pandemic is over.
This causes so much anxiety in me because I feel I’m not improving. Could it be pulmonary hypertension? (which would be terrifying) Could it be heart-related? (also terrifying) Or is it just a chronic issue I’ll have to live with caused from the PE? I just want answers.
I am soo happy and relieved I finally Read someone else that is having health issues after their blood clot has disappeared…
I’m a 46 year old female.. athletic and totally Healthy…2017 I sadly got 2 blood clots in my legs and 2 in my lungs..
March 2020 I received yet another clot in my right lung
I honestly think I’m going crazy and that know one believes me. I have tried.. Xarelto.. Eliquis…(gave me very itchy skin and major headaches) now on Pradaxa …Yet another c.t scan the clot is gone..My Issue Is…I have severe back and chest pain. Sometimes shortness of breath. I’ve tried explaining this to my specialist and family dr…no one has ever heard of this..This pain/ discomfort goes in waves. I could be good for a few hours. Then I need to catch my breathe. Or my chest ( spasms) as I say and becomes tight…right up and into my throat… I pop Tylenol sometimes 1-2 a day for the pain…
I’m a runner… athletic…I work out and lift weights…( Not at this time)
I can do day to day things around the house and have even pushed myself to power walk…to build up my strength again..
What is wrong??!…I just keep switching blood thinners but they all make me feel like this. Now that this is the second occurance. I am on blood thinners for life.
My name is Stacey S.. please if someone is reading this..can u please contact me and help .. stacey.gunther40@gmail.com….I would honestly appreciate any advice..
Hi, My name is Saul G.
I was diagnosed with multiple clots in both my lungs.
My story started roughly 4 months ago, my first indication that something was wrong was a weird pressure in my chest.
In the following weeks I started developing a multitude of symptoms.
*Shortness of breath
*chest pain
*Severe fatigue
*dizziness
*Light headedness
*Heart palpitations
*Rapid heart rate
*High blood pressure
*Mild dry cough
During those 4-5 months I was in and out of the ER due to complications of the mentioned symptoms.
Each time the hospital would take my vitals which were always normal with the exception of elevated blood pressure.
They would perform a series of tests
(Complete blood panel,EKG and X-rays) and each time the hospital would discharge me because “Everything looked good” according to them, it’s your anxiety they would tell me.
I started questioning my sanity, perhaps I’m crazy and I’m not really experiencing these symptoms and it’s all in my head.
Anxiety, that’s the reason for my symptoms, the doctors from the ER sure seemed to think so given my history of severe anxiety and PTSD.
Needless to say the healthcare providers and I were utterly mistaken.
Due to the covid-19 pandemic I was unable to book a appointment for a in office visit with my primary care physician so I was forced to book a telemedicine appointment.
At first he too thought my symptoms were anxiety related perhaps even related to allergies, the pollen was particularly bad this year so I was prescribed Loratadine as a first step.
When that didn’t help he thought that I had developed asthma, So he prescribed Albuterol inhaler, that didn’t help either.
The significant discomfort I felt in my chest continued and worsened over the next few months.
I was exhausted and livid at the thought that no one seemed to know what the heck was going on with me, I’m a rather heavy individual so at one point I thought could this be due to my obesity? But that didn’t make sense as I’ve come down 50lbs in the past year, if anything I should be feeling better right?
Fast forward
Finally on the evening I went into the ER after having a particularly bad episode.
The hospital started with the usual tests
However this doctor did something different, He ordered a D-dimer test which came back elevated.
This prompted the doctor to order a CT scan of my chest.
He came back a couple of hours later and informed me that I have multiple pulmonary embolis as he suspected.
After months that seemed like decades of suffering I finally knew what was wrong with me, admittedly I was terrified at the news, but somewhat relieved that at the very least I finally had the answer I longed-for.
I was Immediately admitted for a overnight stay
As I write this I’m on treatment, suffice it to say that there hasn’t been much improvement.
One of the scariest part of this journey so far is the aftermath of the injections.
I’ve developed severe bruising at the Lovenox injection sites, so much so that a trip to the ER was necessary, the hospital ordered another CT scan to make sure the bleeding was subcutaneous.
Thankfully the bleeding was in fact subcutaneous and i was prescribed antibiotics to prevent infection of the area.
As I mentioned above I’m a rather large individual with a large abdomen, the bruising covers roughly 15-20% of my abdomen to give you an Idea of how significant the bruising actually is.
All my symptoms are pretty much the same, some days are worse than others.
What bothers me the most is the shortness of breath, and
again that too fluctuates in severity.
I’m currently taking warfarin 5mg daily, I also have to get my INR checked every 3 days due to inconsistent numbers, today it was 1.9 which is concerning due to risk of new clots.
A week ago it was 4.1 which is on the higher side.
As difficult as this situation may be, I remain optimistic that I will make a full recovery eventually.
If anyone would like to reach out for any reason please feel free to do so.
I too would love to discuss with people who have had a similar situation.
Thank you for taking the time to read my story.
Is a thrombosis specialist the same as vascular doçtor or pulmonologist,
Thank you for posting this blog. I wrote a post on my blog that talks about chest pains. It has a few points that you may want to check.
I am 3 years post PE in my right lung. I was hospitalized for 10 days in December 2015. Was given Lovenox in the hospital and then on Eliquis for one year. I am 2 years off the blood thinner but I still have sharp stabbing pain under my right breast constantly. It just lasts a couple of seconds at a time. It is exactly the same sharp pain I suffered when I was first diagnosed with the PE. I have had every test for heart, get the D dimer test once a year. I am afraid that is another PE forming. My doctors assure me its not but you know your own body. I am not that active a person, I sit all day at a computer, in bed by 9 every night, I try and get a walk in every day. So because I am immobile most of the time I think I will suffer another PE anytime.
Hi,
I am a 23 year old who got diagnosed with PE 1 month back. It is fairly big and caused a tissue to die
I have all the symptoms that you do and im really scared. Would you mind connecting with me so I could learn from your journey (OR ANYONE WHO READS THIS). Because I live alone in a new city and it has been really hard to understand this disease fully
Just because you are anti coagulated, that does NOT mean your risk of a subsequent PE is zero. There is still a chance- just greatly reduced. A DOAC might be appropriate for this patient as they are out of target Inr range for warfarin.
I was reading that Costochondritis pain occurs frequently to the left of the breastbone. That’s where my pain is. It is sharp pain too. I am four months past my pe diagnosis and this pain has worsened in the past week or two. I’m on xarelto. Also experience excessive hair loss, excessive dizziness/lightheadedness, fatigue, right foot/ankle swelling, occasionally shortness of breath. I’m thinking though since the pain is new it’s more likely Costochondritis. Feel free to email me.
Hi..i was diagnosed with Pulmonary embolism after sugery but my worry i feel pain on my left side even after started Xerelto tablets. Do i need to worry?
Thanks
I was a pedestrian walk cross street, lady hit me. I was find but do to immobility..i got a PE and now my life has change, cant walk right and in severe pain. PE was found in lungs after accident couldn’t breathe…Doctors dont no where it come from…having trouble breathing now. praying
Yes I been experiencing chest pain three months after my pe which were large in each lung very scary, taking eliquis each day hoping this isn’t a new one,
Hi my name is Victoria I had unprovoked PE in both lungs I’m on apixaban. My left side is always painful i struggle to breath most of the time and my back and legs are painful. Will this ever go away. I can’t work I’m going crazy.
Well, it’s been over four years now and no real improvement. I am still getting short of breath, extreme chest pain and tightness in the legs. No answers. I continue to be as active as possible and to keep smiling. Though life is not the same, I do find mindfulness of assistance as a coping exercise. It is good to have this group to share with and to know that we are not alone.
Peter, I am writing to thank you for posting.
It has been 3 and a half years for me now, and I also still have chest pain.No answers for me either. Knowing I am not alone gives me hope.
I also keep active and I try to keep smiling.
Thanks again
I am 3 months post saddle pulmonary embolism and thank god I am not alone. Today the chest pain is really bad and is causing major anxiety. I am on apixaban and suffer dizziness and aching joints. I guess this means that the ongoing pain is always going to be there.
I suffered from DVT and PE in 2010 and I’m still suffering 9 years later. I was at home alone and got short of breath. I tried to get to my house phone to call my doctor but collapsed on the floor about a foot from the phone. When I awaken I finally was able to call the doctor and she told me to come on in then. To get to the point, I was hospitalized in a regular room and later that night was moved to ICU for the rest of the night. I was taken the next morning to a bigger hospital where they were better equipped for my condition. I remained in ICU for 6 more days. The PE finally dissolved, and I was told by my team of doctors that they thought I was suppose to have died. I pulled through but still suffer from chronic PE. Although I do not have pain in the left side of my chest the right side still feel like heavy books pressing on down on it. I have shortness of breath a lot and I’m asthmatic with two inhalers. I some time have anxiety attacks and bouts of depression. When I catch a cold, I also suffer from chest infections. I am a lifer on Warfarin. When I go to the doctor now they say I’m fine but I still suffer from Post PE.
Hi. Im 23 & i had a “small” P.E. on my right lung in Jan of 2019. My legs came back clear with no sign of DVT, but I had a baby in Nov 2018 and was hospitalized for a blood disease for nearly 2 weeks after and my blood doctor said he thinks the pregnancy was the cause of the P.E. I’m now on eliquis for atleast 6 months. At first the pain got better, that was my only symptom was chest pain (strangely on my left side even though the clot was on my right) and pain when taking a deep breath. But now it just comes and goes. It doesn’t hurt when i take A deep breath anymore but the pain on the left side is still there most of the time. It really worries me considering it’s been 3 almost 4 months and they said the clot wasn’t big. But I’m also worried about the fact that they never actually found what caused the clot. They only kept me in the hospital for 24 hours. (Which was fine with me considering i had A newborn) but anyways, does anyone have any thoughts or comments? Thanks!
My PE was In February of 2019. Mine was a result of a broken ankle. I’m on Warfarin and they told me for 3-6 months. Although I generally feel better, at least 5 times a day I get the chest heaviness, etc and often on the other side from my embolism. I have noticed that the weather quality makes my breathing and pain worse. I live in Texas and we’ve had high humidity lately. 2 days ago we had severe rain and I almost took myself back to the ER because my chest felt so weird. Once the rain went away I felt better. So I’m taking note of the air quality and weather patterns for myself. Maybe that is something that’s happening to you too? Last night I had a borderline migraine and was so worried about an aneurism. I’m starting to think I’m going to have medical anxiety for the rest of my life. Congrats on your baby! I can’t imagine going through this with a newborn.
I also had Multiple PEs following a broken foot. This was 10+ months ago. Still feeling like someone is sitting on my chest, with chronic chest pain that nobody can diagnose. It’s not weather related. I’m on belbuca 450mg every 12hrs and norco 2x a day. Ice is only thing that helps. Still waiting for answers from someone. My pain Dr thought I had chostochronditis but the intercostal nerve block in my chest only made my pain worse. He said he didn’t know what happened and to see him in a month. So sick of being a human pin cushion/science experiment with no answers. Hope you get some!
Hey Taylor! I’m 23 too and got diagnosed a month back.. it has been really hard and would appreciate if we could connect? It’ll help me with my recovery because I have so many questions and health care in Canada is so bad!
I currently have an acute PE on my right lung considered small. I have pain on left side despite the PE being in my right lung. My doctors said transfer of pain is very common as there are not a lot of nerves in your lungs…
I was diagnosed with a P.E. on Oct, 10th, 2018 after being taken to the hospital in an ambulance. After nearly 10 days in the hospital on blood thinners I was released. I was feeling better, when 2 days later i began feeling weird sensations and found it hard to even travel. I’ve been to the emergency room 5 times since and each time they say they don’t see any reason for my shortness of breath or any other symptom I’m having. My chest C.T. scans show my clot is gone and they send me home. Is there any other post P.E. explanations?
i was diagnosed with pulmonary embolism in last year October, i was on heparin and warfrin and now i am currently feeling pain in the left side of my chest and spitting blood at nights. i am as worried as the person that asked the question
I was just diagnosed with Pulmonary Embolism and Pulmonary Thromboembolism in ER at Strong Memorisl hospital. I collapsed from difficulty breathing and passed out. Broke 2 ribs ended in ER. Cat scan with dye detected multiple blood clots in both lungs and ultrasound of legs detected clots in right leg. On Eliquis every 12 hrs 10 mg each dose. Then down to 5 mg every 12 hrs. After 2 hours following dosage I began to have chest pain and yesterday was sweating profusely, nausea and near fainting. Are these symptoms typical? I’m type 1 diabetic for 50 years and 75 yrs old. Good health otherwise blood levels ok some are just below normal. Eco cardiogram showed no damage to heart. Allergy to many medications. What I need to know is, when to call 911. I react differently than most people and try to keep calm. The overwhelming feeling of passing out is frightening but if dude effect I’m ok waiting it out. Thank you look forward to answer or advice. Helen
I am a 47 yr old female.. Had a Saddle Pulmonary Embolism non provocked and all genetic testing negative. Now I’ve had my 2nd Pulmonary Embolism in ten months., I’m exhausted, deal with memory loss. Drs can not find a cause for the DVT at this point and waiting on cardiologist test results in couple weeks, she did mention the pressure in the lung n heart. They placed the IVC filter back in permanently and blood thinners for life. Unlike the first PE, IVC was placed n removed months later. Can’t help to think that if I was on blood thinners and still had the IVC filter, the 2nd bilateral Pulmonary Embolism would not have happened. I struggle for air, comes out of no where. I’m exhausted all the time. I’m not sure what to do at this point.
Hi I am just kinda worried.. I had a PE January 4th in my right lung, I was in the hospital for a week. It’s now been 3 months since that and my INR levels have been pretty steady but I went last week to get blood work and my level is at 1.59! So he upped my dose of Coumadin to 10mgs a day. I was taking 7.5mgs. I had a baby girl December 1st so the dr said thats probably most likely what caused the clot. I’m 25 years old and I’m just really scared! The clot was in my right lung, and sometimes I still have pain on my right side. I really no nothing about all this but I know I’m really scared and nervous! Idk why my level dropped down like that? So if anyone could please help me with some information about this I would so appreciate it so much! Thank you!
-Brittany
Brittany, i am 23 years old and i was also diagnosed with pulmonary embolism in both lungs and now feeling pain in the left side of my chest.this happened in October 2017 and i am currently feeling the pain.i am scared out of this world right now. i hope you get your answers and advice, God bless you!
Hi, I am a 46 year old female, my first was A saddle Pulmonary Embolism, IVC filster was placed during emergency surgery, then removed after the six month period. I was told at that point, I didn’t need to be on any blood thinners. Well 10 months later. I was fine just finished writing my bills out. Then out of the blew I started sweating perfusely, I became very dizzy, then bam it was like fireworks went off in my chest, my husband came to my side, I couldn’t talk, I couldn’t move and I just fell backwards. Emergency Services were called my blood pressure was 190 over 93. But within 20 minutes my blood pressure was lower than normal and the peramefic insisted it wasn’t a P.E.. also when I was on the blood thinners early on after the 1st. No one monitored my blood. This is a nightmare, all I can say is I’m glad I survived what I shouldn’t have. I’m not playing with Fire. I’m now on a very high dosage of blood thinners. I was told at one point that I had lupus. Just looking for some direction. I see my primary care tmrw. And I wrote down every question.
I started having left side pain. I went to many doctors who told me is was just my kidney. Weeks later I could’t breathe, and I thought I was having a heart attack. I went to the Emergency Room as soon as possible. I was there for nine hours before the Doctor said that I had 7 big blood clots in my left lung and several little ones in my right lung. They also said that my left lung started to deteriorate and that if I waited any longer to come to the Emergency Room that I could’ve died. I spent 5 days in ICU and 2 days in a regular unit. I know take a Lovenox shot twice daily to break down the blood clots. I have to take these shots for six months before the blood clots should be gone.
Interesting blog, glad I found it. I was on Xeralto and had a second massive PE. First in January 2016 and again in July 2016. One provoked by vascular surgery, the second unprovoked.
I guess I am lucky to be followed by a nurse practitioner who hates how cheap Ontario’s health care system is and is not open to any further articles or publications. (Sarcasm). It beats having to go to a walk-in clinic to beg for a life saving blood thinner though, but what a hassle having to prove you aren’t killing the neighborhood cats with the drug!! No advice, no time and even referrals being ignored. I avoid the NP and only need her for my eliquis prescription. I have been waiting for an appointment since Jan. 2016 at Sunnybrook in Toronto, guess the waiting lists are true here in Ontario. Is there a doctor out there who offers anything for pain other then useless Tylenol? Apparently not! Lyrica, their drug of choice is useless and apparently works best for epilepsy.
Anita. I posted one of the first posts on here back in 2013. I still suffer from exact things as I mentioned above. And it is now 3/2018. Did you ever get into Sunnybrook? What was your prognosis regarding Post Pulmonary Emboli Syndrome??
Could she have CTEPH I have same symptoms
had intense chest and right upper back pain last night, had a right lung ablasion in may this year followed by collapsed lung and chest tube inserted followed by pulmonary embolism, on warfarin 2.5 mg daily, went to healthcare facility had ekg, was ok, chest xray showed spot on right lung was told to go to er and given paperwork, had another ekg was ok bloodwork ok had cardiac enzymes checked ok too so was told to call my dr. about the chest xray, so my question is could the pain be caused by the warfarin,
I had my PE on September 30th 2016 after surgery. I told them when I woke up I had pain in my lungs. They told me it was just gas pain. So I went home, A week later I passed out and got diagnosed with a Pulmonary Embolism. My life hasn’t been the same. I’m in pain everyday, and it’s not getting any better. I’m so frustrated with Doctors who know nothing.
I suffered my second PE four months ago and am experiencing a feeling of loneliness about what I’m going through. This blog certainly helps because others are going through the same things. I feel embarrassed by my need for extra rest and not wanting to be over-scheduled. I don’t want to be agoraphobic, but I feel safer staying close to home.
I am so thankful I found this thread. I had my first pe in 2003. It was completely unprovoked and none of the docs could understand why I got it.
Fast forward to today and every aspect of my life has been negatively impacted by this event. I have had several recurring pe’s and although we’ve found the reasons (factor VIII deficiency and Apl syndrome), they have yet to find where the clots are actually coming from.
I am so incredibly frustrated because none of my doctors believe that I am in excruciating pain every day. They tell me it’s all in my head. It’s “just anxiety” causing the pain. Yes, when I do have anxiety or panic attacks the pain is way worse, but I have quite a lot of pain even without anxiety. I have been diagnosed with PTSD from the first clot as I was not supposed to live. One of my docs told me that whenever that sharp stabbing pain in my rib area comes on, I need to go straight to the Er to see if I am having another clot. The ER docs know me now and have concluded that I am nothing more than a “drug seeker”. It is so frustrating. If there was something that would help the pain that was not an opiate, I’d gladly take it. However, after almost 15 yrs, I’ve yet to find anything.
Everything I’ve read here gives me some relief knowing that I am not the only one going thru this. I will definitely suggest to my docs to look into post pe syndrome.
Thank you all!
Hi Shelly
Thank you so much for your post.
Thank you so much for posting, you gave me some relief.
Two years and two months after a minor clot in my right lung and I am still in pain throughout my chest. I have had every exam you can imagine, I’ve been to every doctor in my country and they all say it’s either in my head, or costochondritis. I feel I am losing my mind!
Thank you for this information. I am also recovering from bi-lateral pulmonary emboli, and almost six months later continue to experience very similar chest pain (right sided, medial sternum), usually irrespective of exercise, but when I overdo the walking/housecleaning it worsens. Your information is both reassuring and consistent with what I have found or been told.
why does not one forum answer the extreme pain in the chest and down the arm after being diagnosed and discharged?
Hi Laura, my pain is similar at times. After reading Peter’s posts about costochondritis, above, I came across this video posted on the NHS site (UK health service), about costochondritis: https://youtu.be/uvJbQFDeyOk The physiotherapist explains the condition and gives advice. I tried some of the stretches without the product he suggests, and it has helped. Perhaps others might find the same. I think that every one of us has different underlying conditions/life circumstances, and that makes it difficult for doctors to know what will happen when we leave the hospital. Many people don’t appear to experience these pains, but those of us who do find each other on these forums. Furthermore, Drs don’t want us to ignore pains that could be life threatening. I’d rather waste their time and go to emergency unnecessarily, than have a heart attack or another PE having ignored the symptoms. I don’t believe there are easy answers, unfortunately. Best wishes.
Hi Maudl
It is helpful to be able to chat with people who understand. Few people do and some can be quite hurtful. My pain continues and there are no answers. It has been two and a half years now. I have, (they tell me) a chronic condition and have to ‘pace’ my activities. I remain as active as possible but others here express the exact difficulties we all seem to experience. I have stopped going to the emergency as they don’t seem to be able to assist any more. (Last one was an ambulance ride) I just hope that there is nothing more severe underlying. I do see a GP every few months. All the best. Please keep posting.
Hello Peter,
Wondering how you are doing now. I hope you are feeling at least a little better.
Around about the 2 year mark of my P.E., I felt I had made my peace with the whole situation. I was feeling better and excited about getting back to more of my usual activitites. I then started having clenching chest pains which seemed to come out of nowhere. The next six months was filled with E.R. visits which usually went nowhere. I decided (with my best Dr.) to avoid the E.R. and the dreaded cta and any other form of xray.
To make a long story a little shorter, I had another P.E. just a few weeks ago. It was smaller than the last one, so the experience has been much less dramatic, but still unnerving. I am going down a familiar road of limited energy and endless tests.
For now, I am still in recovery mode. It’s hard to say how things will go this time around. I might just take a tiny bit of time to feel sorry for myself and then try to figure out a new normal. Life is precious and I want to focus on the positives as muçh as possible.
One piece of advice I would like to pass along; is that you have to trust yourself. A cardiologist once told me that if you are experiencing chest pain/pressure, shortness of breath or worsening symptoms, you need to get it checked out. Because, he said, it’s their job and it’s better to be safe. Like many of you, I didn’t want to “bother” anyone or be labelled as an anxious person. So I endured about 8 emergency visits that were inconclusive, and #9 revealed the second P.E.. This whole experience can be humbling, but don’t give up.
Jeanette
In Nov, 2015 I had a large saddle embolism, small one also in upper right lobe of right lung. It was discovered I have a genetic mutation, 2 copies, clotting disorder. Im on Eliquis, 10 mg. After the year, no further symptoms, hematologist took me off Eliquis, and within 3 weeks, I got another clot in right upper lobe of lung. I’m back on thinner, larger dosage at first, now back to 10 mg daily divided into am and pm doses. I did not have any clots in the legs. But I have continu d to have severe very dabilitating pain and cramping in my left leg and left side chest and arm pains and numbness in my arm. The doctor has checked for cardiac issue, none although I do have a stent. The chest and arm pain scares me as it’s severe and very uncomfortable. I’m so fatigued and short of breath. Any suggestions? Should I see a pulmonary specialist?
Hi Paula
Sorry to hear of your condition. Perhaps you should keep searching if you don’t feel at rest with the answers you are getting.
It is over two years since my PEs. I have no helpful suggestions. They say I have Costochondritis. I have seen so many specialists and Psych’s, mental heath therapists and pain management people. I cope most of the time but have afternoon sleeps, get tired very quickly, short of breath and the pain drags you down. I am told that it is not life threatening so I push myself to do things I enjoy and am back at work part time. I have stopped going to emergency departments but if you are concerned, you should seek help! I understand you concerns! I still get the cramps in the legs and worry but the doc says it is OK!? I have found mindful meditation helpful.
I am 1 year after a minor pe in my right lung, and I still feel pain at the initial site of the embolism as well as pai and discomfort throughout the chest (sternum, back, shoulders, armpits).
I have visited many specialists but no one really helped as they have absolutely no clue to why this is happening. I have had three CT scans throughout the year, the first one showed atelectasia at the site of the embolism, but it was all gone at the 2nd and 3rd scan which they told me looked absolutely normal.
The pain is still here though, and I feel like I am losing my mind. I have no idea what else to do, I try to live a normal life, but there are days I feel so helpless and alone.
My only relief is to read your comments again.
I hope for the best for all of us
Had a PE 4 years ago. I too continue with discomfort and pain and can no longer lye on my left side. I feel as though Im crushing something inside when I lye in my left and every so often I will get like a stabbing sensation that really does catch my breath. Im no longer on warfrin and feel some damage was done after my PE.
Hi Mary
Thank you for your post.
I am told I have Costochondritis, after multiple PE’s in Jan 2015. It is over two years now and considered a chronic condition. The hoops I have been jumping through, tests and trying this and that has finally stopped. I am as active as I can be. It is helpful to read that I am not alone. I agree, I believe there is more damage to the lungs than I am told. It is often difficult to breath.
I started having PEs in 2000, I was a runner and mountain climber, had quite a few of them, doctor always said I was in great physical shape, which I was of course. No conception that I might be having PEs according to doctors. In Feb 2002 had a real serious one, much chest pain and complete shortness of breath, ER doctor said I had strained a chest muscle. I knew I was going to die from this whatever I had, so I insisted that they find out what was wrong. Finally, reluctantly, my doctor gave me a chest scan, I had lost 1/2 my right lung on the scan screen. Now they were alarmed. But I was already recovering, so they put me on warfarin and I went home. I have Factor V Leiden and probably antiphospholipid syndrome. Anyway, I went back to running and mountain climbing although I was seriously slowed down for a couple years. I noticed when I got tired, I would have a recurrence of the burning “point” pain in my right chest, but they said I was not having another PE, go home and live life and Ignore it. Nothing more they could do. In 2008 I was on my way to climb a mountain and I thought I was having another PE. Had a CAT scan and they said I was not having PE. Needless to say, I had a tough time on my mountain, felt extremely weak at some moments, and failed miserably at the mountain and also some other climbs after. But I apparently recovered. I had costochondritis episode a few years ago, I had to diagnose myself, my new doctor was mystified. This last year I am again having chronic pain (but mild) in same site as my big PE of 2002. Feels like a muscle strain, but I strongly suspect it’s my old PE. I ignore it because doctor at my new home in the mountains of NH wouldn’t have a clue. Most of the time I feel strong, did an 11 day backpack this summer and felt good. Occasionally I have bad days but that is mostly because of hiking in hot humid weather, I think I get a little dehydrated. Then I recover. Mostly I feel strong, so I don’t worry much about it. I am 74 so I am entitled to some mysterious pains. Now I’m off in a couple weeks to Nepal to climb a 21,000 ft. mountain. My affairs are in order, if I check out on the trip, so be it.
David you rock,
I’m turning 33 this month and about 4 months post multiple small PE’s in both lungs guessing they came from the left leg. I’m a Iraq War Vet so who knows where it could have come from. I am fairly active as well your story inspires me to psh through the sometimes recurring pains. I’m still on Eliquis so I figure most of them are mental or post PE pains. I’m a pastor and looking at trying to do a triathlon. Anyone done swimming post PE? Any recommendations?
Is it possible to have chest pain after a tiny clot was discovered in a subsegmental artery of left lung. Please if somebody has had a small isolated lung clot let me know if you have this same post PE symptoms
I am.. same symptoms.. my doctor said is anxiety.. even tho is still same symptoms..
Hii.. I do have same symptoms that you were going thru .. my doctor said is anxiety.. even tho is still same symptoms as the p.e.. being to the e.r 2 times after being diagnosed.. some days pain is not that bad. Some other days.i wonder if is the cloth dissolving or a new blood cloth. I don’t wanna go to the emergency room.. they might think I’m exaggerating.. how you been lately? Is been a yr since your comment.. please let me know. Thanks
Tony,
If your still on thinners you are likely good especially if it’s Eliquis. I had multiple small subsegmentals. I too have random pains and the mind canes can come on hard. I still sleep slightly elevated. Have found increasing with vitamin D and Magnesium helps a bit. I am being treated essentially by two good friends on a Nurse Practitioner with years as a level 1 trauma nurse and the other a DO. Both without knowing each other are recommending the same things. From the looks of it recurring phantom pains could be an issue for some people. Keep your head up and don’t play the mind games. As a Christian and a Pastor I take comfort in knowing that a clot ultimately doesn’t number my days but God does. So I resolve to live each day sold out for Christ and valuing time with the family. If anyone is looking for someone to talk with, I do biblical counseling. shoot me an email at pastor@regenerationchurchohio.org
Also our website with a link to the pastor’s corner blog (daily devotional you can freely subscribe to receive) is located at
http://www.regenerationchurchohio.org
Let me finish this out with a little encouragement. I see a lot of hopelessness and hurting on here and want everyone to know there is hope even if the clot or clots come back. Set not your hope on recovery or this life but in Him who holds the span of eternity and our breath in His Sovereignly capable hands. If you would like to know more about how you can do so reach out through email and check out the website.
I hace exactly the same symptoms of this person chest pain pre PE diagnosis and post PE from a tiny sub segment clot. I am on Eliquis 5 Mg every 12 hours but my chest pain is still there. Heart problems has been rule out by several tests and angiography.
Im 23 woman with no risk factors, i was in the ER with DVT in my right arm, and pulmonary embolism a month ago. the doctors have been so sketchy and secretive and i feel like everything i know i learned of the internet (a universally sketchy source) my chest pain has not lessened up at all, ive been on 20 mg Xeralto and just waiting for the pain to subside but it persist.
3 weeks ago i was in the hospotal for PE today im having mild chest pains should i be concerned?
My 36 yr old dil has stage 4 breast cancer & asked me to take my 4 grandchildren to Fla for spring break since she would be down from a chemo round. I drove 23 hrs coming back to Illinois. Noticed swelling in left foot & ankle. Three days after getting home I had sharp pain from left shoulder to back & dizziness. Went to er & had suffered bi-lateral pe. I am two months out, on 20mg xarelto, and having intermittent left side chest pain & weakness. It seems, one minute I feel fairly good, then the pain comes out of nowhere. I see a heart Dr in June..any advice? I am 59 & a little scared!!
I am sorry to read your story. If you need someone who understands exactly where you are NOW – email me. I too have bouts of anxiety & the chest paint, heart’burn’ can really send me I’m a tail spin. Most ppl around me don’t under – they can’t get why I can’t get up a set of stairs or help put groceries away or make a full dinner. I find it very frustrating. But I am getting better at paving myself & stared using my fit air a bit… (Im visual) & if I do too much – pain/tired – I can see that. That’s real to me & I can rationalize that… It is NOT just in my head. You are not alone – email me anytime… New normal obviously! I am 47 yrs.
Hello, I just had my 2nd bilateral pulmonary embolism within the year. My latest one being on Feb. 23, 2016. I am experiencing chest pressure, which is semi-painful, but the pressure can get bad sometimes. Also, just heavy feeling. I’m just wondering if anyone has felt these type of symptoms. It makes me want to do nothing more than get into bed. It happens whether I am laying down or doing something. I also have shortness of breath as well, but I know that is to be expected. Has anyone had these type of issues? I am about 3 months out from having it and I have really bad days with this chest pressure and weakness. Can these things occur from healing of the lung or possibly damage? It seems doctors don’t take anything AFTER you have had a P.E. seriously. But I know after reading everybody’s posts that I am not crazy. I have not felt right since my first embolism, but this chest pressure can go to the birds. It is strong sometimes. Has anyone else had anything near this experience? I am taking xarelto as well. Thank you!
I just had another PE on May 17th, the last one had been in November. I’ve been having a lot of chest pain/pressure and am wondering if I should go in again but was thinking that since I’m on xaralto it isn’t possible to have another PE? Not sure if that’s correct… not sure what to do…
Hi Jill- unfortunately I don’t think I could be of much help with your questions – as I am fairly new at this. Mine happened this past Sunday/ but everything you said in your post sounds quite familiar. The chest pain is, at times, so severe. I am functioning on Tylenol — so far. But the shortness of breath is distressing to me. The hospital hardly told me anything about this – so I went to the Internet to get information. I do have a Dr.’s appt. tomorrow-so . . . We’ll see. I am responding a few weeks after your post – so I hope you are doing better by now. I’d like to hear from you. You can e-mail me here if you like: weebs88@icloud.com
Hi everyone,
5 years now since PE (massive, after surgery) and I’d like to share some things that have helped me and how the pain is for me 5 years post PE (which I know is from the clot!!!!!!)
It really helped me to know that I wasn’t the only one who has pain/dizziness/headaches/trouble breathing deeply/short of breath- because all the doctors kept saying that after a year there should be no more pain from a PE years later. Like some of you, I’ve also been diagnosed with “costochondritis” AKA “chest wall pain” when I’ve gone to Emerg. thinking it was another clot because the pain was so intense and it hurt to breathe in.
PAIN-
-centred on right side of my back, the place where it originally hurt with the clot, but also get pain in shoulders/ribs/sternum/diaphragm/neck and also have more headaches
-is daily but varies according to my activity level/ humidity/ breathing too deeply
– hurts more in certain positions, especially laying flat or sitting in a chair with a hard back or that hits me in “the clot spot”.
MEDS-
-as per Emerg. docs for costochondritis, I take Tylenol and Ibuprofen (Advil) together when the pain is centred around the ribs because it seems more like inflammation and they say it works better BUT only for a couple of days because it is hard on liver/kidneys!!!!
-hydromorphone I use very sparingly only when I really need it because I think that treating this with painkillers is NOT the way to go…..I worry more about being addicted!
THINGS THAT HELP ME-
1. Visceral Massage (special training req’d.) **it hurts for up to 1 week afterwards, but over time REALLY helped. I found I could do more, with increase in motion and decrease in pain/breathlessness. They work on your lungs/diaphragm/peritoneum/pleura and help with headaches too!!!!!
2. Heating pad (daily) to help with pain
3. Moderate exercise (outside on dry days, indoors when rainy or too hot/humid)
4. Voltaren (for costochondritis/shoulder pain when not using heating pad)
Hope that this stuff might help some of you too!
-Lise
Hi Lise
I posted in 2015. It is now 2017 and I am no better. You describe my symptoms exactly and things that help me also. I still find it difficult but have found mindful meditation a great help. People often do not understand that it is now a chronic condition. Mowed the lawns the other day and ended up throwing up and in bed for the day. We are not looking for pity but understanding and compassion. It’s a hard road and there don’t seem to be any answers!
Just thought I’d share my story too since all so similar! I am a 27 Year old woman and I have factor v Leiden mutation. Ihave known this since blood tests at 16! My papa and mum both had the same and had clots! Until now I had no problems just 6week courses of clexane injections after the birth of my children. 2 weeks ago I went to my dr with left chest pains from back to front she said it was muscular come 3days later I was in more of the same pain…no other symptoms! I called the doctors for advice and was told to call 999 but I felt fine and so my mum ran me to a&e. I had bloods checked, chest X-ray, ct scan and finally a heart echo! They discovered I had a clot on my right hand lung -the opposite from pain. I was admired started on more injections aswell as warfarin as warfarin takes few days to kick in! It then came to light that most of the time clots are more than just one and the pain in my left side could indeed be a small clot also that’s just too small to show up on tests! After 2days in hospital I started to get pains all over and every morning I was waking up feeling sick and dizzy but all obs were looking normal! To this day I have no explanation to the nausea and dizziness but the pain I continue to have is the clot breaking down and the damage it leaves behind! Since coming home I have been experiencing lower back and stomachs pain I hit checked for a uti but all clear…..does anyone have an answer to this new pain?
I’m thankful to be here today. I suffered an Acute double massive PE on Sept. 9, 2015.. My birthday. My right lung was 80% blocked and my left lung close to 70% blocked. The doctor’s rushed me in for emergency TPA treatment and I remained in the ICU for 6 days. Following the removal of catheter tubing which dispensed the TPA… I remained hospitalized for an addtl 3 1/2 weeks on Heparin. While placing the tubes the doctor found a hole in my heart(PFO). Further investigation by a TEE revealed 3 holes in my heart…which the cardiologist said “has no effect on my blood clots.” I am really scared as I continue to have left side chest pain. I take Warafin daily and my INR has stayed around 1.9-2.2. The doctor feels this is an acceptable number…while I worry about future mortality. Can these holes be harmful to my health with having a double massive PE a few short months ago? All blood test results came back negative..includingfor factor 2 and factor 5. No family history of clotting and current in weight and height. While in the process of discharge…they also found hypothyroidism… and I currently take levothyroxine daily as well. How will I know if this chest pain is life threatening? I’m a mom of 5 beautiful children..and want to be here with them for many more years to come.
Greetings everyone. I am so sorry to read so many stories of folks who have suffered PEs and continue to have symptoms months and years later.
My story began on August 9th, 2015. I had no previous symptoms that I was aware at the time. In short, I collapsed at home, in the bedroom. I remembered feeling dizzy, then my wife hitting me in the face. I responded, “dizzy” and then passed out again. When my wife ran to call 911, she did not know that I had stopped breathing. My heart also stopped. When the EMTs arrived, I was basically dead on the floor. My bladder and bowels had emptied. My son walked in when the paramedics were performing CPR. I was revived and semi-conscious. When I arrived at the ER, I was diagnosed with multiple massive bilateral PEs. They told my wife that even with treatment, it was unlikely that I would survive the first hour. She was encouraged to call family. I was conscious enough to hear this and attempted to talk to my sons – to alleviate their fears. As soon as they left the room, I coded a second time. Again, I was revived by staff. According to my brother, I coded a third time, although I have no memory of it. The vascular surgeon was unavailable and the ER docs didn’t think I would survive surgery, so they gave me a systemic tPA. God, EMTs, tPA, and amazing hospital staff saved my life that morning.
I spent 14 days in the hospital bleeding for 12 of those days and passing very painful clots from my right kidney. I had an IVC filter placed in my inferior venacava. My heart sustained some damage. My right ventricle was extremely enlarged from the clots. My right kidney was mildly damaged (Stage II) by the tPA. Doppler scans found that I had DVTs in my right leg from my ankle to above my pelvis.
As I mentioned earlier, I had no previous symptoms that I was aware… sort of. Several months before, I had contacted my doctor because I had a bad cold and charlie horses in my legs. The doc treated me for the cold, but ignored the leg issue. Later, I had pain in my foot and ankle and was given cortisone shots for Plantar Fasciitis. I remember mentioning to the Podiatrist that the pain extended up my leg. He said it was probably tendonitis. Other than that – nothing. Especially nothing the night before I collapsed.
So, of course I am on warfarin. My doc also found a genetic risk factor…so I’m a lifer. The docs have also told me that I am at high risk for an encore performance.
Now I am three months out. I have seen so many doctors: vascular surgeons, pulmonologists, cardiologists, hematologists, and urologists. I’m about doctored out. Most of the docs have told me that I am a miracle. Most people with such extensive clots don’t survive.
This information hasn’t done much for helping me or my wife sleep soundly. My wife often wakes up and checks to see if I’m breathing. Two nights ago she had to go out of town and made me promise to have the neighbor’s phone on speed dial if I started feeling dizzy. (If it happens again, like before, I wouldn’t have time to dial the phone.)
As for pain, I still have pain in my chest. I sometimes am short of breath. Usually not much, but enough to cause concern or thoughts of is it happening again? I also continue to have “charlie horses” or knots in my right calf. I wear compression socks every day all day. The leg pains last for a few hours then go away. I sometimes wonder if I’m clotting even with the warfarin therapy and then after a short time, the clots are dissolving. I don’t know and simply don’t understand what is happening. I have reached out to my primary doc, but have not heard back about the leg issues.
I’m glad to hear that so many of you have made it years out. I hope to do the same. I hope the fear goes away for both my wife and me so that we can focus on more positive and productive things.
Best to all.
Hi Craig,
I’m so sorry to hear what you went through but I thank God you made it through. I had a sub-massive bilateral pulmonary embolism September 28th with severe right side heart dilation. I was in ICU for four days.
I also am struggling with a lot of anxiety. I think for now my shortness of breath might have subsided but I’ve read symptoms typically come and go. Right now I’m dealing with chest pain on my left side and it scares me due to the heart damage.
Do your doctors think you will recover from your heart damage? Are you having any issues from it?
Hi Tiffany,
Thanks for your comment. I’m sorry you too have had to deal with such significant PEs.
Now that it has been four months, I’ve had a number of heart tests including cardiac CAT and Echo cardiograms. The echo shows good blood flow and no residual strain. The heart is still dilated, but seems to be functioning within normal limits. I hope yours will return to normal functioning as well.
You mentioned your symptoms come and go. So do mine. I don’t know why and the doctors have not been able to really explain much regarding post thrombotic syndrome or whatever is the cause of chest pain.
On the not so good side, my wife noticed a lump on back of my knee earlier this week. After a new doppler scan, they found new occlusive clots. My INR was 3.2 and I still developed new clots. Needless to say, this was not the news I had hoped for. The docs have considered Warfarin a clinical fail for me and are switching to Xerelto hopefully tomorrow. I have additional scans on Monday to check for clots in my other leg and arms. If there are a number of clots, I have a feeling I will be back in the hospital.
Again, I hope you will recover fully. Keep asking your docs questions and ask them to research if they don’t. If that doesn’t work, ask for referrals to new doctors. Hopefully someone can help!!!
Merry Christmas to all!
Craig,
Thank you for your response. I’m glad your heart function is back to normal but I’m so very sorry to hear that you developed new clots. I hope that Xaralto works better for you. You are in my prayers.
Tiffany
Craig,
Did your hematologist run tests for clotting disorders?
Tiffany
Hope things are going better for you now Craig! I was wondering if they had you just taking a blood thinner or whether you were on blood thinner and Heparin shots too?
For several months after my DVT/PE they had me taking Warfarin but also getting a couple of shots of heparin a day (depending on how my INR was)
My husband still worries and it’s been 5 years post PE…..but I also have epilepsy and asthma so I think that’s also part of it. I’m a “triple threat” hahaha.
It’s hard for us and hard for our loved ones too.
Not sure if they have something like it where you are but we went to a 6 session class that was about managing Chronic Illness/Pain and it really helped both of us.
All the best to you and yours,
Lise.
I have had 10 PE’s over the last 5 years. Last being 8 weeks ago. My chest pain has never went away. I am to see a pain Dr this week. Has anyone had success with pain medication?
Hi Karen
Sorry to hear about your PE’s.
I have tried many pain meds and I don’t know which is worse, the pain or the side effects from the meds. I am still in a great deal of pain having reduced my meds in the past weeks.
I wish you all the best.
I am in my late 50s and I have just been diagnosed with Costochondritis after nine months of pain from multiple PE’s following shoulder surgery in Jan 2015. Is anyone else in the same boat?
Peter K-
I was also diagnosed with costochondritis about 6 mos after a PE in Aug 2014. It has been about a year and a half at this writing. Still having some problems, but making progress even though it is slow. Age 58
Jeanette
Hi Jeanette
Thanks for your comment. My wife gives me great support but people don’t seem to understand this condition and I find it difficult when I am unable to join in activities due to the pain levels.
I am still in a great deal of pain and discomfort. I sleep a lot during the day with low energy levels and the lung damage from the PE’s leaving me short of breath. The doctors want me to be positive and look on the bright side, so I continue to live life as normally as possible.
Hi Janette
It’s 2017 now. How are you going? I have not progressed much at all. Am keeping as positive an outlook as possible.
Hi Peter-
I am still here. It’s been slow going for me, too. I was always energetic and optimistic, so I decided to just keep trying and do my best every day. So far, I have since had 7 separate emergency events and 8 CTA’s. The Doctor feels that future scans would be unwise. I quite agree with him! The chest pain is really scary, but thankfully, I have not had another embolism.
There seems to be a medical round-a-bout here in the Pacific Northwest. Call your family physician, who refers you to the ER, who refers you to the specialist, who tells you to go to the ER. The ER sends you home with no info, but tells you to return if you have chest pain.
This is a strange ailment without clear answers (at least for me). Not sure about my aproach going forward, but trying to think positively. My last hospital trip was just yesterday, so I’m going to rest for a couple of days and then come up with a new coping plan. Best wishes to you, I don’t think we’re alone in this uncertain health situation.
Hi Jeanette
It is Sept 2017 and they have decided I have a chronic condition. I wake up screaming in pain. I have read extensively about pain management as I am not using medications. I work part time and suffer with chest and back pain with shortness of breath. It seems I have to make the best of things now. I continue to try to keep to a schedule and do activities which are rewarding. Starting each day is not easy and I usually sleep for an hour or so in the afternoon. Quite a change in life style but while I struggle physically, I feel I am coping mentally. I do appreciate hearing from you. All the best.
Hi Peter. I first shared my Chronic POST PE pain back in 2013. Now it is 2/2018 and I continue to have significant pain where initial pain was during PE onset. It is also significant in upper left chest area and now left side of sternum. I still have difficulty breathing and great pain upon exertion. At times I think I am having another PE, but now I just do my best to take care of the pain. Unfortunately I am on opiates daily to manage pain, try to walk daily and just have to deal with fatigue and lay down as needed. I try to remain positive but struggle greatly. I wish there was a doctor that would give me one diagnosis instead of several different doctors all giving me something different. I get tired of hearing a doctor say, well your PE’s have resolved. And they think because they have resolved that the patient should be back to normal! So frustrating! If anyone ever heard of s doctor that understands what al of us in this blog are going through and has advice. Please give the name! Take care.
I can tell you I have developed painful trigger points along my costochondral joints, my sternum, and at other points in my rib cage. the primary disturbing pain however is deeper and I always feel like there is a balloon in my chest.
Did they fix or diagnose you? I have the exact same symptoms.. feels like someone is sitting on my chest, chronic chest pain which changes locations- sometimes on upper left, sometimes in the middle and other times on right side. My pain Dr thought I had chostochronditis but the intercostal nerve block made my pain worse not better. I’m on daily pain meds.. would like someone to give me some answers. Did you get any?
I’m 8 months and 8 days into my recovery from bi-lateral pulmonary embolisms with my right lung being totally occluded and infarcted and I still experience chest pains and anxiety and some days mild depression. I am a 28 year old female and these PEs were unprovoked, the doctors couldn’t find out why they occurred, although i believe that it was because i was smoking at the time. It’s almost 3am here in buffalo, ny and i cant sleep….im more so afraid to go to sleep. Ive been experiencing terrible chest and rib pain in my upper right chest and its not really painful when i breathe but when i move. I dont know what to do. Ever since my diagnosis in January and my 5 day stay in the hospital Ive been back and forth to the ER complaining of chest pains and palpitations and anxiety basically all of the symptoms i had experienced prior to finding out i had these clots. Of course as the doctors used to tell me before i finally found out what was wrong they said its anxiety take some zantax you’re fine go home. So i dont know if i should go back to the ER about this pain or just try to keep calm. My husband told me to just go to sleep which was his awful suggestion before that thankfully i ignored. What should i do?
Hi Kimberly:
I primarily answer questions related to navigating the Canadian health care system. You’re asking a question that is clinical in nature. So, you really should be asking your health-care provider this type of question.
It sounds like you are in the United States. If you were in Canada, I would suggest you call a provincial service that provides some medical advice over the phone. I’m not sure if a similar service exists in the United States. I am sorry I can’t be more helpful.
Paul Taylor
Hi kimberly. I had dvt and personally 5.1.14. In both lungs with damage to my heart, pulmonary hypertension. The heart damage cleared up on its own but my chest pain has not stopped. I too had acute un-prevoked. Mine was causes by birth control pills. We’re u taking any type of hormones? Did u travel recently? Did u have recent surgery? These are reasons why pe’s happen
You will have anxiety. Unfortunately nervousness is normal after a near death experience. I have had panic attacks and have gone to the er a couple times post pe, nothing was wrong with me.
I assume you had every blood test done right? If not you should.
Are you currently on blood thinners? Have you followed up with a hematologist?
I really want to know how others cope post pe.
P.S. I’m from NY and currently live in Texas
Thanks,
Patricia.errante@yahoo.com
I was just released from the hospital 9/21 due to pulm.emb that happened from dvt after taking birth control.
Now a few day post hospital ( where i never had shortness of breath while at the hospital) im having shortness of breath and chest pain near the sternum . Im on eliquis and somewhat panic.y.
Did you have shortness of breath?
Followup apt not till tuesday
I had bilateral large PE’s on Dec. 28th, 2018 and I am finding similar anxiety, difficulty sleeping, and surprisingly persistent and variable chest pain. I have had anxiety attacks for 25 years and have had a few panic attacks in my life and I suspect that “others” probably think that the chest pain I (or we) are experiencing is the type of complaint that people with anxiety complain about. I can assure them that the pain I am feeling is far different, far worse, and every bit as disturbing as the chest symptoms experienced during severe anxiety attacks. The problem I suspect is that the pain is such that it absolutely creates anxiety as it feels like something is definitely wrong but the pain is the cause of the anxiety not the effect of anxiety. I am 100% certain of that!
This is a useful thread so thanks to all those commenting.
I had a very large PE 3 weeks ago with ‘severe segmental and subsegmental filling defects worse on left than right’ and multiple smaller clots further in causing atalectasis (collapse). My main symptom was pain and A&E (UK) did an OK job. I was admitted for 4 days as the pain, left sided where the main effusion is, was unmanageable, I couldn’t lie flat at all, barely walk or move let alone deep breath. My PE happened 5 weeks after an ankle operation and I had no DVT. I am on Rivaroxiban for 3-6 months.
I have come off oxygen but still need slow release morphine for pain which I have tried twice unsuccessfully to come off. Overall my pain and shortness of breath are much better but still present. I can be up and about for an hour of so before needing to go back to bed due to increased pain and shortness of breath dizzyness, though this may be the morphine.
Whats worrying me is that twice, including last night when I have barely slept, I have had new and relatively severe right sided chest pain, previous and ongoing pain is left sided, been unable to lie flat or deep breath, sitting up in bed still its moderate like a fist in my chest. Its lunchtime now and this is still the case even with the morphine. My GP said its all part of the healing process last time and I guess I understand that things can change as they get better but with such nasty new chest pain I don’t when I should seek more immediate medical help. I know while on the Rivaroxiban a new clot is extremely unlikely.
It sounds like lots of people had the throbophylia gene blood test. I have a strong family history of clots but the hospital and GP wont do the test because mine happened 5 weeks after surgery. My brother has had two spontaneous clots in his 40’s and my mother has had lots.
Having been previously very fit and healthy at 44 this has been difficult to cope with so I am not surprised others have suffered more significant anxiety.
I threw bilateral “very large” clots on Dec. 28th 2018. It has been only three weeks but my chest pain is becoming alarming especially in the evening. I am a chronic pain patient with persistent neuropathy and have found that in addition to extended release morphine and lyrica I have started to use my break-through morphine for my chest pain as much as for my neuropathic flares. In the past I typically have used the least morphine possible by breaking the instant release (MSIR) in half and getting busy trying to distract myself from neuropathic symptoms. My problem now is that some of the weird sensations in my legs have started to trigger some anxiety as I cannot determine whether or not the feelings are related to blood clots or not. Getting busy tends to make me feel a bit short of breath and inhaling deeply increases my perception of chest pain in both frequency and intensity. I have started to use the full tablet with good results but the pill is short acting and the pain has been re-emerging after about three hours and I only have two breakthrough pills a day. I would like to tell practitioners that as a chronic pain patient with severe persistent bilateral lower body neuropathy with genitofemoral nerve symptoms as well as trigeminal neuralgia primarily on the left side of my head and face that I do have a pretty high pain tolerance for most pain. I barely notice things like needles or wounds, etc. but the chest pain I’m experiencing can be quite intense, is very variable in terms of size and location in my chest and chest wall and is quite painful and persistent and always exacerbated by taking a deep breath. This pain is far more disturbing than just normal “chest pain.” I am finding that the pain in my chest three weeks later is worse than the pain experienced the first three to four days in the hospital and the first day I was admitted I was way behind in my pain medication schedule for at least the first 12 hours. This chest pain cannot be described easily and it seems to change sometimes by the minute. I always feel like there is a balloon in the middle of my chest and it does radiate to my left shoulder and my neck and sometimes is very sharp and lancinating. I pretty much feel a sensation of pressure all the time.
I’ve been dealing with the exact same symptoms as you. I had multiple PE’s and DVT in May 2018. Was on Xaralto for 6 months. 4 months in, I started to have severe chest pain in different location and intensity than the P.E. I’ve seen every Dr.. nobody knows what is wrong with me. They thought I had chostchronditist but the steroid injection in my spine didn’t work. They then did an intercostal nerve block in my chest 3 weeks ago which only made my pain worse. Did you get any answers?
I’m new to the PE family. I had major clots on both lungs about 3 weeks ago and I’m still not sure if I’ll be on warfarin for life. The last few weeks I’ve experienced sharp chest pains. I’ve been to about 8 doctors appointments since leaving the ccu and they all say it’s basically the healing that I’m feeling. I’m not so sure. Whatever it is, I don’t like it. I have an appointment with a cardiologist tomorrow. Is it anyone who’s been successfull with having them check you out and not just say what they think it is? Mind you when I first felt the symptoms I was told I was having an anxiety attack and sent home. But I know my body. I felt like it was not right and went to a different hospital to get a chest X-ray. I have no faith in guess diagnosis. I want to be checked out. Throughly.
My 18 year old daughter was diagnosed with Bi-lateral PE which were described as clinically ‘massive’. It appears that this started as DVT without any symptomns to the leg until much later on (swelling and cold to the touch) which resulted in the diagnosis but it did manifest other symptoms very early on such as chest pain, breathlessness even by minor movement, tracycardia even at rest of over 150 BPM. We had paramedics severla times called to the house and they put it down to anxiety!! Anyway, eventually she was properly diagnosed and subsequently treated at hospital for nearly 10 days. She has now been on Rivaroxaban for nearly 2 months but recently she has been complaining of returning pain in her left side of her chest along with a little breathlessness. I’m wondering if this could be a sign of Pulmanory Hypertension or is this normal and to be expected. Reading above, many have reported experiencing pain for months afterwards, but I’m a little concerned as to why the pain would suddenly appear after disappearing following treatment at hospital. Any thoughts highly appreciated.
This was some very helpful information
Hi There I am quite new to PE, I was diagnosed with PE 7 weeks ago and I am now on warfarin for 6 months. A few days ago I started to get severe chest pains on the opposite side of where I had the chest pain before I was diagnosed (The pain is now on the left about where my heart is ). I don’t know if this should concern me or not, please I need advice.
Oh and I am 21 don’t know if that info will help.
Thank you.
Hi Mellissa
I took my daughter back to hospital around 3 weeks after being discharged with a similar complaint. The consultant couldn’t really explain why the pain was present but he said that it could be nerve response or even memory. As the clot starts to disolve, the nerves begin to receive blood and work again, it could be that they are responding to the clot with pain signals. Pain is the body’s alert system…. Anyway, they performed another VQ scan on my daughter and found that the blood clots had reduced in size and also her D-dimer results were far more favourable. However, we’re not all the same, and don’t necessarily experience the same symptoms so if you are really worries just go to your local ER and get yourself checked out.
All the best
I just experienced my first PE in both my lungs. I was hospitalized 8Jan19 and discharged 10Jan19. I was experiencing chest pains on my left side while I was in the hospital and just had another ekg done on me when i mentioned it to the doc. Today (sun 13Jan19) ive been experiencing chest pains all day. No shortness of breath, or sweats, nor nausea. Its more of an annoyance, and I cant sleep right now. I dont want to go to the ER. They have me on lovonox injections and bridging me on warfarin. I go tomorrow for my first inr blood draw. Im hoping my heart is not affected. They tested me for blood clots in my legs. Did an ultrasound on my heart to make sure my arteries and valves were all good and everything checked fine. If this is a normal reaction to the PE… I can live with that for now. I just dont want it to be affecting my heart.
very interesting I myself was diagnosed with pulmonary embolism 20 days ago found only due to the fact I felt as if i were having a heart attack they did a cat scan of my lungs at the er and found a blood clot in my lungs. they immediately admitted me a stay of 4 days starting me on eloxtro not spelled correctly its a new strong blood thinner that does not require momonitoring. once home and doing research on this medication I soon found out there are numerous lawsuits due to severe bleeding at the same time I was seeing my physician because after being on this medication I had blood in my urine…I ask my Dr to please switch me too another blood thinner not caring that I be monitored actually preferred to be monitored. My Dr proceeds to tell me he has never switched a patient from one blood thinner to another but agreed it was probably the medication causing the blood in my urine so he puts me on 60mg of enoxaparin 2 shots a day totaling 120mg per day along with 5mg of warfarin 1x a day until my levels are between 2.0-3.0. after the 20th day my levels are 1.6 so he has continued the 2 shots a day of enoxaparin and raised the warfarin to 6mg a day. this seems like a long time for my levels of warfarin to get to even 2.0 plus being on 2 blood thinners at one time truly scares me and to make matters a little more scary I’ve accidentally cut myself shaving and although a pretty good shaving slice I did not bleed any more than normal I’m trusting my Dr knows what he is doing
Hi my name is Larraine and its actually quite a relief to hear there are other people out there experiencing the same symptoms.I went for minor surgery on my knee last july 2014 and when I came out I collapsed,The paramedics gave me 50/50 chance of living my sats were so low.I had a CT scan and was diagnosed with two massive P E ‘S one in each lung and a DVT.I was in critical care where I was thrombolised which was horrific.I have since suffered post thrombotic syndrome in my leg and post traumatic stress disorder.I still get the pains in my chest and have dizziness,headaches and loss of balance,I will be on warfarin for life.My doctor also doesnt feel that the chest pain is due to the existing problem but I have always felt it is the same pain I was having.Sometimes when you are being told this it makes me feel neurotic!!
Hello Larraine, Please tell me if your diagnosis of Post Traumatic Stress disorder is because of what you went through with the blood clot and its treatment,. My husband just had treatment for Pulmonary embolism (his second bout in 5 years) and he was treated in the hospital with heparin and Coumadin and now is back home and on Coumadin. He is now having anxiety, fear of death, shortness of breath, but no actual pain.
Did you have any anxiety , etc. shortly after you were treated for PE? Thank you for answering – my mail is jims wife at msn dot com if you care to directly answer me. I don’t know if this site will notify me to check for your answer. Thank you. Mary
Hi I hit with pe will pain ever go? Just asking
Hi, my name is, Jeremy. I suffered a massive Saddle Pulmonary Embolism in April of 2012. Ever since the initial clot, I’ve been experiencing a lot of chest pain in the left side of my lungs. Sometimes it feels like someone is pouring hot liquid down my lung. The pain is transient. Sometimes it goes away for a few days, other times it can get up to a level 7. Most of the time is a level 2-5 background type of pain. I went to the ER last October and they didn’t find a new clot. For the past five days I’ve been having a lot of pain again in the left side of my chest, and at times on the right side. How do I know this is not a new clot? I really don’t want to go through another CT scan. Do you think a simple D-Dimer test will be enough to tell whether or not I’m re-clotting? I’m a lifer on Warfarin. I take 5 Milligrams of Warfarin and my last INR two weeks ago was 3.0. I have tested positive for all three APS Antibodies with a 98 for Beta 2 Glycoprotein 1 LGG. I also have the Prothrombin or (Factor 2) Gene Mutation Heterozygous. What do you think I should do other than bombarding the Emergency Room again with a possible false alarm? Any advice would be greatly appreciated!
Hi Jeremy:
The best person to answer these questions is your doctor or the specialist who has been treating you. You said you went to the ER last October, and it sounds like you went home without clear answers. I think it’s time for you to book an appointment with your own doctor who should have a better understanding of your case than an ER MD. If you are not facing a medical emergency your regular doctor should be the first person you see.
Whatever you do don’t settle for a d-dimer test. It didn’t pick up my PE. I was sent home and told to relax. Stress was giving me chest pain. Finally I got a CT scan of my chest which picked up all the multiple small clots I had in both lungs. I was diagnosed with Antiphospholipid Syndrome, so am also a lifer on coumadin. I also test positive for all 3 antibodies. This was in April 2012. I was wondering myself if it was normal to experience pain so many years after. Am getting similar pain as I did when I had my PEs on the upper left side of my chest. It triggers anxiety for me and I go back and forth wondering wether it’s a blood clot.
My advise is that even as much as pain it will be go get a CT scan. You are at high risk at clotting and don’t have many other options.
Now I need to talk myself into taking my own advise!
Hi Sonia,
My son Shaun (40) went a month before being diagnosed with multiple clots and a major one in the left chest. He was positive for the antiphosphoidlipid screening test but needs to have another sometime in June for confirmation. He is a non smoker fairly healthy until this. His family doctor was treating him for bronchitis and then after 4 weeks decided to get a chest X-ray which came back normal. The next day he callapsed and I took him to emerg. They did another chest X-ray and thought he had pneumonia. They kept him and did a ct scan the next day where they discovered he had multiple PE and one of which was very large. They looked at his leg and he had a large DVT as well. He is home now and continues to have chest pain continuous and alternates in intensity. Sometimes he keeps him awake and wakes him up. It can be 8 out of 10 on a pain scale. He is on xeralto which I have read isn’t effective for antiphosphoidlipid syndrome. I am concerned. How is your pain now and which anticoagulant are you on? I hope you are doing much better. Thank you
Michelle
Do the CT scan D-Dimer are not always conclusive
Jeremy,
You need to go straight to the ER when you have symptoms. I know a CT scan is high on radiation but the benefits outweigh the risks…..do not take chances! It’s better to keep going to the ER and let them tell you there are no clots than to be unsure because worrying will increase your blood pressure and heart rate. I have been to the ER numerous times but there is comfort in hearing that there are no clots. My DVT and PE were in 2017 and I still have symptoms. Doctors say it is not from the PE but I know better.
God bless you!
Lisa…….please assist me in the search for answers……Dr. Greets is the one doctor that has identified the term “post pulmonary syndrome.”. I AM FOUR YEARS OUT from my major pulmonary embolism and I am still experiencing the symptoms of chest pain, deep
internal pain where i first felt in my shoesain upon my emboli. I continue to have bouts with shortness of breath as well..and pain upon exertion, coughing and hiccups. I am tired of drs. Tell me that they have NEVER heard of a patient continue to have these symptoms post P.E. There has to be others in my shoes……..as well as medical confirmation. This is not in my head!!!
I had my realised PE in 12th dec. 2013. I have microembolism both of my lungs, it takes almost one year to find our why I have chest and back pains with couthing. After 6 days of fraxiparin i am on xarelto from more than 3 month. I still often have pain in my chest and upper side of my back, coughing and feeling dizzy frequently. Sometimes I feel those symptoms will never gone.
absolutely agree; I am 8 years down the road from multiple PE’s and still get pain and shortness of breath. the pain is in exactly the same place as when it first struck and is the same pain though less intense. I am asthmatic too and whenever I get a cold, it becomes a chest infection. This has happened at least twice a year every year since the PE and no one can tell me there are no ongoing symptoms from a PE. I’d never heard of Post PE syndrome, but having discovered this article, I shall go to my doctor armed with new information There are lots of us out there!
So glad I found this. I had multiple PEs in 2013 and multiple in 2015. I’m on Xarelto for life, but I get chest pain and leg pain in the exact same place about once a year. Doctors act as if I’m the only one. I can handle the discomfort, but it’s the unknown cause that scares me.
Dawn, I know this is late but I am 27 and have gone through almost word for word what you have. As of recently I’ve been to the point that I treat the Drs, like they treat me, they just look at me like what I’m describing is some otherly world description of what I’m experiencing. They never know what to say, they just shrug their shoulders and turn to their computer. It’s makes me sad because even family members seem to think it’s no big deal.
Hi Dean, I too experience pain from multiple PEs and the doctors are always at a lost. Have you found any further info on this? Perhaps we should set up support community and share info
I agree Nichole! We need a support group because the doctors have NO clue!!!
I had a blood clot in my lungs in July of 2019 I got off eliquis in Dec I’m now having chest pains again but not really short of breath yet could it possibly be another clot
My daughter has a small clot she’s on blood thinners she’s been having chest pains what’s y on
Hi I know it has been a few years but I am in this situation. i still get tearful when I think about my situation. I had an extensive PE in 2018 and My lower right lung just hasn’t recovered. I feel like there is something sitting in the bottom of my right lung and when I try to exert I have burning sensation in that part so I have never regained my ability to exercise and while stabbing pain stopped i still have an ache when at rest. I am so much better but easily get respiratory infections now which take ages to improve but never 100% absent. I tire easily and sweat bucket loads just for trying to walk quickly. Its awful and i stopped talking to my GP about it as from the beginning everyone said I would fully recover, but that doesn’t seem to be my experience although I have seen slow but huge improvement from day 1 when everyone thought I had a heat attack.
Hi Dawn, I had four PE’s, two in each lung in 2016 due to hormone therapy. I had post back, chest & shoulder pain and pressure around that time that I let them convince me was “panic” attacks; after all I did just about die right. It’s now four years later, I continued to have them periodically and I’ve had three of these pains in four weeks so severe, I felt sure I was having a hear attack. I just saw a cardiologist and am scheduled for tests to reassure myself my heart is fine. I found this page just now and am only now aware of so many others experiencing these pains as well. I’m always told “panic and anxiety” no, it’s not. I have demanded d-dimers from my primary care a few times and asked my Pulmonary specialist for leg sono’s and chest ex rays which he was fine about doing. They’ve always shown me to be fine. The pain however comes out of nowhere, no pre-stressor or anxiety. It’s very frightening, especially when it intensifies and there’s no way to know how bad it will get or how long it will last. Mine are anywhere from a couple, up to 40 or so minutes long. The testimonies here prove there is something to this, I’m going to continue to push with my Pulmonologist, he is a good man and I think will listen now that I know there are more like me out there too. Hugs love and support to you all. (btw, I’m 59 with a history of perfect heart health)
I am going on 3 1/2 years of what Dr.greets calls post pe syndrome. I had a massive OR in my left lung, and I still suffer from pain with deep breathing, and have shortness of breath. I have never heard the term post or syndrome. I have only been told from a couple of doctors that they never heard of anyone experiencing post PE pain for this length of time . Wherer can I find any information on post pe syndrome.?
I also am suffering pain post multiple pe episodes. First one in 2005…2nd Oct 2013 having one quite large and multiple multiple smaller clots throughout my r lung, left lung having the largest kind of quarter sized clot next to my heart. I was so lucky I know this….but I NEVER stopped having deep breathing pain and consistent shortness of breath following 2005’s incident. Doctors mostly dismissed the possibility of my odd chest pains and shoulder…added with the intermittent shortness of breath I did the suffer a minor MI with stent insertion (2005). Then come end of Sept 2013 with sweating and shortness of breath becoming almost unbearable, I the went to the ER , after having chemical scans and tests; pulmonary and heart……, sent on my way Oct 1 2013 from the hospital (2nd ER visit kept for observation) …the ER doc telling me to “Go home. Take a Valium and relax! “My heart and lungs looked clear”….had a full on PE hit while I was sitting in the pulmonologist’s office two days later which was next door to the largest and best Cardiac hosp. in the Wash. D.C. area…. had I been at home “relaxing” on the ranch… I would have never made it as I live 40 miles from the nearest hospital out in horse country No. Va.and would be ….
Then….after days in the hospital on blood thinners, my cardiologist decided to “go in and take a peak to be 100% sure some of this chest pain wasn’t heart related.” My left anterior arteries were all blocked and something on the right…needed a triple bypass but since on ‘Lovanox’ and warfarin couldn’t have that surgery…. instead needing 3 new stents in my heart.
We know our bodies I believe better than anyone, these scans are only 80% plus or minus correct. Keep hounding, keep talking to your docs. Stay alive. Who cares if or what they’re thinking as long as you get to the bottom of your issue. I went from “go take a valium” to having 7 doctors at the foot of my hospital bed discussing the course of action needed to keep me alive. BIG change. BTW I’m 57 yrs old.
How are you doing now ?
Thank goodness things happened the way they did, maura! I hope you are well, and you are right, we have to be our own advocates. There appears to be very little medical information about ‘post PE syndrome’ from the GPs. Thankfully, I have a very supportive Practice Nurse who keeps an eye on me! Best of luck.
I have got two PE’s so far in my life. The first started with shortness and tightness in my chest when I was working out around March of 2018. At one point I was at a farmers market walking around became dizzy, short of breath and almost fainting. I sat down for about 20 minutes and things seem to go back to normal. I really didn’t know what was going on. Then in October 2018 I started having shortness of breath and back and chest pain while playing with my little dogs. This time the pain was sharper and more painful. I went to my doctor and they checked my oxygen level it was fine. Checked my EKG for my heart and it came out fine. Checked my blood pressure and said it was fine. Sent me home with some inhalers and anxiety medicines. Made myself an appointment to see a Pulmonalogist / Lung Doctor. By the end of November early December 2018 I couldn’t take the pain no more in my chest and back as well as the shortness of breath any time I did something strenuous. So the doctors take xray’s didn’t find anything, was sent to cardiologist he checked my heart said it was in great shape. I was still in pain but they told me to go home and get a CT Scan the next day. I went home with some pain meds and thats it. The next day I show up and get my CT scan two hours later they tell me head to the hospital you have a right upper embolism on you right lung. Get to the hospital as soon as possible. Now getting to the hospital its a long wait just to get a bed 12 hrs to be exact sitting in the emergency room waiting for my turn. Finally get a room. Soon as I get in they put me on bed rest and attach 1600 mg of Heperian in my IV for 3 days. Along with Norco for pain in my back and chest and ambien to help me sleep. Stayed there 3 days. Then they sent me home on Lovanox Shots for two weeks. Morning and Night I have to give myself a shot. After a while those shots hurt. They also placed me on Eliquis 2x a day. My chest and back pain never really go away and shortness of breath. About a month later my pain starts getting really bad again in fact worse than the time before. I go back to Pulmonologist in February 2019 and he orders another CT Scan. Two hours later they call and tell my you have two more PE’s. One on the Upper Lobe on my left lung and one on the Upper Lobe of my right lung. I couldn’t believe it. Three PE’s in less than a month and a half’s time. Needless to say I was really upset. They recommended me having an IVC filter put in my artery for precaution sake. Just a little note for you guys they never found out how I was getting my clots. No DVT’s, My blood pressure is normal, my oxygen level is always normal, my heart is normal. I still have pain in my middle of my back that goes through to my chest. It literally feels like some one kicked me in my chest with an iron boot and It hurts to breath too…The doctors always ask me are you diabetic and I tell them no I’m not. Then they ran all kinds of blood work on me. Thank God I came back negative for cancer. Everything’s good on my blood but only one thing I’m a little high on my cholesterol level that’s it. So after another 3 days in the hospital they send me home starting on Warfarin / Coumidin. Some pain meds and ambien to help me sleep. I’ve had to go to pain management now because of the pain in my back and my chest. Now I have more pain where they inserted the IVC filter in my right groin area and my stomach now. Would not recommend for any one to get one of these unless you really, really have to. That being said I’m back home now. I am on Warfarin / Coumidin 5 one day 5 another then 2.5 on another day. My INR is at 3.0… its been about 2 1/2 months sense my second PE in February of 2019. I have Post Pulmonary symptoms…. starts with pain in the middle of my back then goes through my chest and its hard to breath at times. Went back to the ER about 3 weeks ago to have them give me another CT Scan. My EKG is good again, my oxygen is fine and my blood pressure are all good. No DVT’s and the CT Scan shows no clots. My doctors are still not sure why I got these PE’s. They don’t understand the pain I’m having. I feel like I’m not the norm at times. But let me tell you the pain is all to real. It comes and goes now. I have to watch myself that I don’t over do my walking or if I start working on a project at home or even just cleaning up around the house I have to watch myself. Living like this really blows…Having to take all the medicines now just to get through the day. I will believe in My God. That He will see me through all this and heal me And I pray for all of you who are going through this that God will heal you too… I’ve heard it’s gonna be along recovery time but that a lot of doctors don’t know about the post effects of a PE. Let me tell you I just had an attack this night as I’m writing this to you all. Feels like you have another PE going on again. But with a lot of prayer and my medicine I will recover and I’m so glad I’m here to tell my story. I hope it helps someone who needs it. Well God Bless. and take care of yourselves…
Thank you
Wow! Thanks for sharing Chris. I had a PE on 9/2017 (multiple clots in both legs and both lungs) and since then I have always had spasms/flutters in my chest (some doctors told me it’s anxiety) but it has gradually gotten worse and now I am having chest pain, back pain and shortness of breath. I have been to the ER numerous times but still have symptoms. The doctor told me if my INR (I am on Coumadin) is between 2-3 and I take my prescribed meds that I cannot have another PE. My last INR was 2.2 and my heart was checked and it’s fine and all my other numbers/scans are good. It is frustrating when the doctors have no answer for our complaints yet we still have these symptoms. I put my trust and faith in the Lord that He will get me (and you) through this. God is my ultimate physician! If I have to go back to the ER I will insist this time that they do all the tests they can do because there must be a reason for my symptoms. BTW, they never found out the cause of my clots so I am on blood thinners for life. We need more information on post PE care because it can be scary.
May God bless you all and may we all be healed in the name of Jesus!
Oh my. I just saw your post. I am going through a similar situation but the diagnosed the PE quicker in the ER I went to. I am on an anticoagulant and closely monitored by my primary care doc. I think I should see a hematologist also.
Anyway hope you are well and thriving and thank you for your very educational and honest post. I am so sorry you had to go through all of that. Lois
How are you doing now Chris? Hope you’re well.
Thank you Chris Alaniz. I am a 46 year old athletic female…3 years ago I had my 1st blood clot..2 in my legs 2 in my lungs…March of this year yet again another clot in my lung…After trying Xeralto..Elequise and now Pradaxa i honestly thought it was the medication making me feel back pain, chest pain,tightness in my chest and throat and at times I have to sit and catch my breathe…I was worried I had cancer…and scared I had another clot I went for a 2nd c.t scan showed clot had disappeared…why these symptoms still.??..I’m a runner .. strong..I used to lift weights. Why am I Not recovering…The doctors have never heard of this. I started reading up on this then found this site…I’m not going crazy. Others like yourself are experiencing these same symptoms…I want my old self back. I really do…Stacey.S
i feel your pain , suffered a pulminary embolism in june 2020, have been on eliquis since and whilst i have been told clots have dissolved i still get lung/chest pain, sometimes can be quite painful, yet no doctor can tell me why, want my old life back.
So glad to see this post..my 15 year old daughter is recovering from a pulmonary embolism. She is in constant pain. I am actually typing this from her hospital room. She was admitted 3 days ago from upper gi bleed from xarelto. Drs prescribed naproxen for pain and this is what ended up happening from it! She had no risk factors for the PE. And like I said she is only 15! Its awful to watch her suffer like this. She was an active volleyball player. Now she can’t walk to the kitchen without being in pain. Its been about a month. They say clot is almost completely gone. They had to take her off xarelto for 3 days and treat her gi bleed now they are putting her on eliquis. Shes being closely monitored. They also originally misdiagnosed her with anxiety and sent her home where she passed out. I then took her to childrens hospital and they did a d dymer and CT scan that showed the clot..she did not have any dvts.
Hey Chris – read your post and have nothing quite as tough as your situation but was just released from hospital after being diagnosed with a PE in my left lung. I don’t have to tell you about the pain which was worst I have ever felt in my life. They hooked me up to Haperin and now on Xarelto along with a steroid and antibiotics….the second day released I had the miserable feeling come back in exactly same place but went to ER first thing opposed to being in denial and waiting 6 hours. Since they done tests up the wazoo the first time and knew the issue….they hit me with morphine which actually made the pain worse…then a little bit of Dialdid which is pain med that worked while in hospital…gave me 20 Percocet prescription and sent me home. The pain for breathing is still there and goes right back into a full blown attack once meds wear off. I can go to sleep barely just out of lack of being exhausted as it’s impossible to sleep with this pain…impossible for me to lay down when I have an attack happening…then jump out the bed every three hours with an attack rush to get more pain med…short breath breathing until it kicks in then 3 hours…and here we go again. I called doctor yesterday after my ER visit and she also prescribed Tarodol…which also works but very little amount of pills as that is a short term only drug. My follow up is in one week…anything come to mind on what I need to ask? I’m lost and have major complex about my life in general right now. I am writing this as I pace in my driveway. But much the same as you…heart good, legs good, no cancer…but what is happening can’t be normal. I never had a heart attack but from what I read it seems like I am having 5-6 per day. I had to take my pain pills and count and figure out how I can take per day to make it to next Wednesday. Any advice would be appreciated.
Take care.
Chris, I am wanting to follow up and see how you are doing now? I’m in a very similar position that you were. Multiple PE’s and my last one finally showed clear after having it over a year. Here I am 1.5 years later after my PE’s and I still have debilitating chest pains. They don’t know what from. Thinking possibly my artery pulsates around scar tissue in the arterie in my lung beside my heart and that causes the pain. I was a super healthy and active person before and this has completely knocked my quality of life down significantly. I have been sedentary for 1.5 years because I can’t do anything thanks to chest pains. I’m awoken at night with chest pains. Now getting referred to a pain management clinic to see if they can help me for the chronic pain, but I worry that of that happens I won’t be able to do my job. I can’t even get through the day now being at home as is. So I want to k or if things are better for you, and if they are….what have you done?
Thank you and good luck
Hi Maura
Was just reading your
Comments about your pain after P E
Am in my early days but still have a nagging pain
Dosent really hurt but seems to be there all the time
Thankyou for your comments really helped
Annette (Australia)
hi Annette , i am also from Australia and was diagnosed with a PE in June 2020.
here i am 9 weeks later and still get pains in chest every so often, annoying they can be and also worrying, have been prescribed panadeine forte for pain which i only take 2 of a night to help relax the chest muscles so i can sleep.