One month post diagnosis of PE

Posted , 11 users are following.

Hi's been a month since having my PE's. I was just wondering how all you cope with the emotional ups and downs afterwards. With the chest pains that the doctors say is from the affected right lung referring pain to the left side of chest which then I'm think is heart pain. To having apnea even with my cpap machine but the doctors say my machine's settings are ok..dont worry. When some days I'm mostly breathing ok to days my breathing is worse. When I get easily fatigued. I'm due back to work November 10, 2017. I'm a secretary, with a lot of walking. To no support from family. To co workers saying can't wait till you get back. To me unsure physically if I'll be ok. To my INR this morning 3.9 Just how do you manage? Here I am tearing up😥. Does depression start rearing it's ugly head about now? And knowing we almost died? Needing advice......Thanks for your help!!!

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10 Replies

  • Posted

    Hi Sue. Really feel for you. 😪 Every one is different but I as diagnosed just over a year ago. Only 90% back to normality now. Please just listen to your body. Just little steps to start with. If you get tired rest. I used to have a few good days and think. wow then do a bit too much and end up feeling rough for a week. Some people on here have recovered much quicker. I had multiple bilateral pe with ventricular strain. Not much help really but hang in there. Anxiety is still a problem for me . You can't tell if the clots have dispersed. I am on Apixaban for life. Good luck. This forum is a huge help. 😍💐

    • Posted

      lizzie, one year out 12/16/2016 from saddle pulmonary embolism, on xeralto for now-having a blood test next week to decide if im going off the thinner.....this added to my anxiety/depression/anxiousness as well as giving me something positive to look forward too. i started walking and it seems i get breathless and i get frustrated but luckily i have friends who encourage me and walk with me. but i made positive changes the day i got PE  no sodas, clean eating, walking but exercise has to be pushed on me. i had a clot-buster done, and i had bleeding from an ulcer i never knew i had....and spent 2 weeks in hospital. my thoughts wander to thinking if today is the day im getting another one-i try to stop thinking that but its always there. its weird because i dont look sick but im not myself for sure....2018 cant come too soon. hope this helps and welcome any advice or chatting about this with someone who also experienced this 
    • Posted

      Hi teristalking,

      ?I was diagnosed as having multiple blood clots (many) in both lungs, they had broken away from a DVT in the leg which I was originally treating for a strained calf muscle, I suffer from angina, a rare type I have been told, Prinzmetal Angina, I mentioned this because I frequently have chest pain which has me in our emergency department a lot , this particular evening, pretty close to early hours of the morning, the triage nurse said to me that she was in fact more concerned about my leg than the chest pain, it was swollen, sore, but not to the touch and was very hot to touch. I was actually seen immediately and had blood drawn for Troponin levels and the D dimer blood test, the doctor was pretty confident that the D dimer would come back normal, it didn't so a contrast CT scan was ordered for the next day, it was around 2am when blood results came back, no technicians on at that time of the morning. Had the contrast CT scan on lungs and that's when all the blood clots were found, I was put onto Xarelto and told I was to be on them for life, I had a reaction to the Xarelto which I had to be swapped over to Pradaxa. 

      ?As you know Pulmonary Embolisms are life threatening if left untreated, even symptoms while on treatment, I was surprised that I  had a PE but it didn't set any panic, depression ect off, I never had the text book symptoms apart from the extreme breathlessness and fatigue even after just showering, I just put that down to my angina worsening, I never had sharp pains, even when breathing in and out, you know the symptoms. about 3 months or so my troponins started to rise and they said PE's can cause that, because my leg was swollen up again and warm they ordered another contrast CT scan just to see what was going on, Good news, clots completely gone, although VQ lung scan showed up some small Anomalies, nothing to serious, then had to have a heart echo, same thing a couple of Anomalies? showed up in that as well, obviously nothing life threatening as my follow up appointment with my cardiologist is next month, he wants to put me on warfarin..  Also had a Doppler done on the calf muscle, no more clots (DVT'S). 

      ?I realise everyone is different and can set off a chain reaction of events because they have suffered a life threatening condition, As an ex sufferer of panic/anxiety attacks for 26 years, *touch wood* they have disappeared although still have trouble with the agoraphobia. I believe it's the way we think and it's perfectly normal, however like in my case, all signs of my clots have gone, the reason explained to me as to why I have to be on anti coagulant therapy for life is because I'm pre disposed in them happening again and also to treat, well,  keep the blood less sticky for the angina as well, treating 2 birds with one stone as it was explained to me. It's the way we think and we train our brain in that line of thinking and it becomes a viscous circle, as I said I fully understand peoples anxieties when diagnosed with PE's and we are on the best treatment available for them. PE symptoms can last for up to 12 months but I was speaking to another doctor and I was told it could take even longer in some people, I still get breathless and fatigued easily but I know there is no more clots and treatment  is keeping them away.

  • Posted


    I am so sorry to hear of where you find yourself. You sound stressed and that isn't what you need. As Lizzie says - we are all different, but after a month, I doubt I could walk across the house, let alone go back to work! I wonder if sometimes people think you're ok, because they can't see the damage.

    I am just over 2 years in and am still not 100%. Maybe not comparable, as I had a lot of large clots, but it is a long recovery. I needed a lot of support from my family and am eternally grateful to my son, who walked my dogs every day for months.  

    My improvements came in fits and starts - nothing for weeks, then a big jump.  Exercise has always helped for me, but nothing too strenuous. A little every day.  Keep warm (very important) and try not to get stressed (that'll be easy then.....).

    Thinking about it doesn't help, but it's hard not to when you chest aches or burns. If it's like that, I grab a book (to read, although biting it may help. Also useful as ammunition if everyone is ignoring you).

    If you go back to work anytime soon (i.e. this year), you need to warn everyone you may not be able to do full days. You might be ok, but best let them know.

    As far as I know, there is no aftercare plan for PEs.  You are on your own (apart from us warfarin junkies). I wonder if it falls between too many disciplines (heart, pulmonary, vascular etc.), so no-one has taken ownership...dunno.

    Anyway, the short answer is that it will get better, it's not quick, but you are in good company and we know how you feel......(I almost shed a tear when I first read your post).

    All the best.


  • Posted

    Hi sue,

    ?I am coming into the 8th month of being diagnosed with PE, I will admit that I do often worry about it especially when I get my chest pain, I'm like is this my angina or the PE talking, it has taken me all this time and I'm still not right, I did make progress there for awhile and thought good it's finally moving on, I don't let panic come into it, I suffered panic/anxiety for 26+ years so I know what it's like, however I can quickly disperse a panic attack with what I have been taught by therapists, I just say to myself, look, I just don't have time for a panic attack smile, I know it's easy to say but it does take a lot of practise.

    ?Last week my calf muscle started aching and puffed up again, it didn't hurt to touch or put weight on, it also had the hot feeling inside, sometimes it would be hot to touch but not all the time, I just brushed it off as part of the recovery process as doctors had told me sometimes you will get the symptoms for 6-12 months and possibly up to 2 years. I had a collapse last week, I was sitting watching TV in the forward position on the couch, I had sudden chest pain, I remember that I gasped and then it was good night Irene, I had passed out, I'm guessing 20-30 seconds but it could of been longer, I was home by myself, when I came to I was slumped back in the couch and face up looking at the ceiling, I still had chest discomfort so used my GTN spray, that relieved it. Several hours later chest pain and breathlessness returned so I called for an ambulance. Because I had a collapse, chest pain, dizzy and breathless doctors were concerned about a reoccurrence of a PE, Had my troponins done and another contrast CT scan was done on lungs, good news was there was nothing to report as in a new PE , however they are still a bit concerned so doctor had requested an ultrasound on my lower left leg this afternoon, just to see if that shows anything out of place. Troponins were up past my normal range but still in the negative range so all good in that department as well, just waiting on a heart echo now. I haven't had any more pass outs but leg is still puffy, feelings of heat in leg, breathless, dizzy and get chest pain every now and then. I'm not sure what's going on and I don't think the doctors do either.

    Listen to your body, don't over do things, I'm sure you have heard all of this before smile start off in small steps for walking and exercise, they tell me it's very important that you keep your legs moving and in turn slowly get your lung(s) back into shape. 

  • Posted

    Hi Sue

    I had a PE on August 31st. DVT with several surgeries to remove the clot. I did not go back to work until October  12th.   It was only two days a week then. I am now back at the gym 3 days a week doing the treadmill but still get very tired and short of breath throughout the day. I’m thinking it will take a long time to feel normal again. I feel your pain. I have never been sick and this is very frustrating. Hang in there it will get better.

  • Posted

    Sorry to hear that you have been unwell. I ended up with unprovoked bilateral pulmonary emboli in March which needed to be thrombolysed because I was so unstable and spent a week on CCU. Six weeks later I developed a new DVT on my leg whilst on warfarin which was difficult. It is very much an emotional rollercoaster with ups and downs but we have to be thankful that we survived it as many are not so lucky. It’s normal to feel low and tearful as still I have tearful days. I feel that physically I have come on a long way but mentally it will stay with me forever as I worry it might happen again. It’s perfectly normal to feel like this. I still have no answers what caused them but am under haematology and will be injecting myself with daltaparin injections daily for the rest of my life. It is a life changing event. Don’t be so hard on yourself as you have been through a lot. 
    • Posted


      Thanks for the encouraging words. You are correct we are alive! I have a lot to be thankful for. Mine was apparently caused by May Thurner Syndrome. A very rare condition that I was born with. Not sure what happened to make it react at this age! I just had my IVC filter removed so I am hoping this is the end of all this craziness. I wish you much luck and continued good health.

      Again thanks for the message.

  • Posted

    Yes depression and Anxiety come out bad before during and after it’s so tough u will always think there’s something wrong when u feel like u did wen u were diagnosed u will be scared and worried all the time u just have to try n cope focus on other things and that u r still living and that u caught it in time I am still struggling and mine was last year and around this time so it’s almost been one year anniversary and I’m freaking out again wit the anxiety and thinking I have another clot cause of anxiety 
  • Posted

    Yes depression and Anxiety come out bad before during and after it’s so tough u will always think there’s something wrong when u feel like u did wen u were diagnosed u will be scared and worried all the time u just have to try n cope focus on other things and that u r still living and that u caught it in time I am still struggling and mine was last year and around this time so it’s almost been one year anniversary and I’m freaking out again wit the anxiety and thinking I have another clot cause of anxiety 

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