Before and Now – One Year After my Pulmonary Embolism

“Even though I didn’t know you before, I think you sound a lot more normal now,” she said to me right before hanging up the phone. I had just finished reminding her that this was my one year anniversary of being admitted into the hospital with a DVT and PE that nearly killed me at this time last year. I knew she wanted to say, “You sound alive,” or something similarly shocking. Stacey, my nurse, has been an essential part of my recovery over the last year and I generally speak to her on a weekly basis about my INR and what dosages of medications to take. There was a time – and not that long ago – when both she and my hematologist questioned my ability to fully recovery, I know. The words weren’t said, but I watched them both desperately search for answers regarding my seemingly diminished mental capacity, ability to remember squat and difficulty finding a job I could simply do. I spent many a hysterical phone call with Stacey from month to month and if she ever grew impatient or frustrated with telling me the same thing day after day when I would call to confirm because I couldn’t even remember to write it down in the first place, she never showed it.

It was moments after I hung up the phone that I realized there really was a before and now. Before my PE and now, after my PE. It got me thinking about something I saw floating around on Facebook –

before and after this

The last year of my life has been, in short, hell on Earth. I have been angry, sad, forgotten, alone, desperate, confused, alienated and unbelievably grief-stricken by the fact that while two in three people do not survive a pulmonary embolism, I am the one that is still here. Why? Why me? The emotional trauma and grief I have faced is second only to the physical pain I have been in for so long and while that has slowly, very slowly started to ease, I know the emotional effects of what I have endured are just beginning.

And this got me thinking even more. The people that I meet from here on out will never know the other me. The me before the PE. They will not know the girl that was more lighthearted, not afraid of pain and able to push through a lot before tossing in the towel, calling it quits and moving on to the next big thing. They won’t know the girl that used to hit the ground running – literally and figuratively – taking three steps forward to every two steps back. “Look on the bright side, life can only get better from here.”

No, they will know the woman that is fearful of every little ache, reserved in action and in thought, at times withdrawn and unable to put into words what used to come flowing so freely. They will know the woman that has and will do all she can to keep her head above water – forget moving forward or back, it’s simply standing upright (literally and figuratively) that matters now. “Everything is a threat, most people can’t be trusted and your own body is most definitely out to get you.” If it can go wrong it will and probably already did.

Because I will never be the same.

And that is not an easy thing to deal with – for anyone, no matter who you are. This changes you. I don’t think you can avoid it.

As I look back over the last year of my life, I realize I am recovering – slowly, but surely and there are parts of me that have healed leaps and bounds compared to where I was when discharged from the hospital. I can walk without a limp more days than not and I can yawn, cough, laugh or hiccup without doubling over in pain. I even ran two miles this past weekend – an accomplishment 363 days in the making.

And I know, in other respects, I have a long way to go. Emotionally, my wounds are still fresh and I am not ready to tackle them head on so I will remain fearful of every little ache, withdrawn and struggling with finding the words to accurately describe my feelings. Today, I will be grateful for the chance I have been given to live again and I will stand.

My hope is that through my experiences, I can help others get from where I was, to where I am to where I hope to be so that together, we can all begin to heal.

Share your story. How long ago did you suffer from a DVT/PE/Blood Clot? What has been your biggest challenge during recovery? How are you a different person now than you were before your incident?

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

Comments

  1. Welcome to the “new normal.” Someday, I’m going to write a book on that topic….

  2. Sara, you’re an amazing writer. I can relate to this so so much. Stay strong, you’re doing amazing! x

    • Hi Holly! Thank you so much for your compliments! I would also like to thank you for reading. I hope to continue to relate to others and find others I can relate to because in that way, we can build a stronger community to bring awareness to this topic. Thank you again!

  3. I just wanted to let you know that this truly touched me. I am a year & 2 months since having PEs. I never knew that other people struggled internally like this, the way that I do. I cried as I read this. Knowing that there is someone who can fully relate to what I feel is so refreshing. Nobody in my life will ever understand how it feels to know that I am the 1 in 3 that made it. I am so grateful, but it completely shook my understand of who I thought I was. Thank you SO much for sharing your story. I don’t feel so alone.
    Your fellow PE survivor
    Caitlynn

    • Hi Caitlynn – I cannot thank YOU enough for sharing your thoughts (and your story!). Even though I share what I have been through and felt, I still wonder from time to time if I am alone, which is one of the reasons I started this site. I know how you feel about other people not understanding – I often feel as though even those that are closest to me do not understand – not even because they don’t want to sometimes, but because they can’t. I am honored to be called a fellow survivor with you and each time I hear from someone who shares their story or leaves their thoughts I think, “That’s two of us, there are FOUR MORE people who aren’t here to share their story.” That shakes me to the core, even to this day. It is my hope that we don’t feel so alone in sharing and for me in writing these posts. I hope to ‘see’ you here again! Don’t be a stranger and take care.

  4. I’m with you: I’m one year and 2 months on too. Still exhausted, I have to sleep for a whole day each weekend in order to be able to hold down my day job Monday to Friday. It’s exhausting – but, yeah, I’m here…. Too emotional about it still to be able to finish my 20+ page letter of complaints to the hospital and the doctors who caused my PE, messed up my meds time and time again, cancelled my appointments and generally made my life (which had already been reduced to hell) even sh*ttier by their lack of care and attention. I was terrified in the hospital – but fully released this January after six months, no longer on Coumadin but worrying every time I get the slightest twinge in a leg muscle: “is that another one forming?”. Those who haven’t been there just do not know. How rare to find others who have been there!!!!! Thank you for posting this page.

    • You’re welcome, Angela and I thank you for stopping by and sharing some of your story. I am sorry to hear you felt that terror and uncertainty in the hospital and in your recovery. I hope you can find some relief and support from sites like this and others that are out there (I hope you saw the resources on the right side of my page). The emotional effects of all of this are very real and I think very often ignored. You are not alone in feeling the way that you do. It sounds like you have been through a lot and I am glad you found this site! I hear all too often that people do not get the care or attention from their doctors that are so needed in the face of an injury/illness like this. Take care and be in touch.

    • Hello,
      I am almost to my one year anniversary of pulmonary embolism and it it has been an emotional roller coaster. I am currently on the blood thinner eliquis, but God has really brought me through this tough patch in my life and I am more than grateful for that! I am so glad that there is more people like me, but sad that there were others that didn’t make it. Thankful for you all on this forum, y’all take care!

  5. I am very thankful that I found this website. I am a nurse and I see PEs and DVTs all the time. I never thought it could happen to me. I never thought I would struggle the way I am physically and emotionally. It’s nice to have others who can relate to my feelings and don’t just disregard them. I thought I was being dramatic but these feelings are very real. I had my PEs last month and ended up in the ER yesterday with chest pain and shortness of breath. I was so afraid of dying. I’m going to do everything I can to recover and help others. Thank you!

    • Hi Julie. I am so thankful you stopped by. I really appreciate your insight and contribution to this community being a nurse. I know all too well the physical and emotional struggles you are speaking of, as do many of us here. I hope that you can help your patients who go through this too, and while I am not glad to hear you suffered from PEs, I am glad to hear you are planning to help others! That is one of the reasons I started this website as well. I wish you well in your recovery and if you are not home yet, I hope you get to return home soon. That was a huge deal for me – getting home so I could begin recovering. Sending warm thoughts your way and looking forward to hearing from you again soon. Take care.

  6. I just cam ehome from the hospital yesterday after being admitted for PE caused by birth control. I am 32 and never thought such a thing would happen to me. I feel like I just stood at the doorway to death and didn’t have to go through while others around me feel like it wasn’t as serious. Thank you for this blog.

    • Hello and thank you for stopping by. I can relate to what you are saying! I was 29 when I had my PE and felt like I escaped death in a major way. That is not something that is easy to deal with – nor something I ever thought I would have to deal with at this point in my life. I hope this blog can provide some insight and comfort as you move through recovery. Thank you for being here and thinking of you.

  7. Hi. Tomorrow is 3 months post pe diagnosis. I think I’ve been recovering ok…but lately I’ve just become so anxious. I don’t know if I’m waiting for something bad to happen, am realizing my body has forever changed, or simply depressed at the cabin fever. I was off or a month, and have been bak at work, which helps a bit mentally. I am grateful that am here…but the anxiety an become consuming. How have you overcome that to focus on living? Thank you!

    • Good evening, Chris. I’m so glad you are here! I understand the feelings of anxiety you are describing all too well and you are most definitely not alone in those feelings as I hear of this quite often.

      I think a lot of factors contribute to the anxiety. Your body has survived something very traumatic and still being early in recovery, I think you are still simply processing what happened. And while that may be easy for someone else to look at and say you should be through it, it’s not that easy (if that makes sense). Surviving a PE or similarly traumatic medical crisis takes a long time to recover from- both psychically and mentally, I believe. And there is, unfortunately, not a lot of help for the emotional and mental side of recovery.

      Part of what helped me was to help others – which is why I started this site. I knew how I felt when I was where you are in recovery and I didn’t want others to feel as alone as I did. I wanted to reach out to other people who had been in my shoes and start a conversation about it. I became passionate about raising awareness because, as you and I both know, some people don’t get that chance ever again. I found that talking about it, reading about it and writing about it helped too – like commenting here, for example.

      What helped me personally focus on living more was to let go of my expectations (that I either didn’t want to admit or couldn’t realize I had). Once I let it be okay that I “wasn’t running,” “couldn’t find a job, “slept for 13 hours” or whatever expectation I put on myself, the anxiety started to ease from time to time. Don’t get me wrong, I still have very anxious days, but they usually come associate with something I think I should or should not be doing. Some days the fact that I woke up was all I needed to be reminded I was okay. I started to enjoy the things I could do (like take a walk or go to dinner with a friend) and I started to feel better about myself.

      I hope this can help in some way. Just remember you are not alone!

  8. Angela Coen says

    Hello there. I’m so sorry to hear of your awful experience after suffering a pulmanary Ebolism, and I share your feelings.
    I am 2 years and 3 months after also suffering a PE but still in agonising pain in my chest. Recently a heart scan has shown an abnormality which was missed originally and it might be that one of the old clots never dissolved. I now face numerous tests on my heart with a very uncertain future.
    The most frustrating issue I have at the moment is accepting that the nhs caused my embolism by over dosing me on tranexamic acid (for heavy menstrual bleeding) and it’s not something that happened naturally. It’s consuming my whole life, but I’ve just happened to find this page and it is comforting to know, that other people have had similar experiences. Please keep up with the positive attitude and I hope you make a full recovery x

    • Hello Angela. Thank you so much for stopping by, for sharing your story and for your kind words about BCRN and the community here. It sounds like you are going through a lot, as many here have and I just wanted to let you know, you are not alone! Even though I know it feels like that at times.

      I am sorry to hear of the uncertainties that lie ahead and please know I will keep you in my thoughts and we are all hoping for the best for you. I know the stress of feeling like you have lost control of your body and what it is doing – and there is no way to fix it or undo what is happening. Facing the constant battle of potentially having lupus (or another autoimmune condition), I can relate to the anxiety that comes along with that.

      I hope you are feeling okay today and please keep in touch. Thinking of you and sending many positive thoughts your way.

  9. I’m glad I’ve found somewhere I can share my thoughts with people who will totally understand..I am coming close to my 1 year anniversary of my diagnosis of a PE in my lower left arterial lobe.
    I can say there is not one day that goes by where I don’t think about my PE. I was hospitalised and on oxygen 24/7 for 4 weeks in a foreign country and although the nurses were very helpful – it was tough. I was then discharged from hospital but was unable to fly home for an additional 4 weeks.
    I have improved over the last 12 months but I am still anxious and have difficulty at times with breathing and cannot be in hot rooms etc.
    I get frequent pain also.

    Do you still suffer these symptoms – or did you after a year? Did they resolve in time??

    Thank-you so much,
    Susannah.

  10. Hi Pe survivors
    Great site as I am one year post PE.As I am an ideaopathic case must stay on the blood thinners a while longer.Have healed up not to bad still have days where I don’t have a lot of energy.Very happy to be alive and am living accordingly.Had a large Pe in both lungs legs were clear.
    Brian

  11. My day started early as I get up an hour before my grandson does to enjoy coffee and the newspaper.Soon I felt pain in my chest so I took a 325mg aspirin, can’t explain the gut feeling something was wrong. I take caution when m body is telling me something. Several minutes later I felt like I had pneumonia[which I have had] but I didn’t have a cold. Gut feelings are so important! Next, there was back pain, all of this in 20 min. So my son took my blood pressure which is normally about 118/62, and it read 179/117. My husband took me to the ER thinking I was having a heart attack. But after a cat scan, I was told I had P.E. The fear I felt because I had been moving around and possibly at deaths door was too overwhelming. I knew people who had died of this. You just have to let the Drs. take over. After several days I didn’t want to go home because the feeling of what I had survived, and I wanted to be taken care of. It is difficult to be on your own and give yourself stomach injections and wondering if they were really gone. I spent several months running to my M.D. with chest pain that always turned out to be nothing. She was so patient with me as she knew this would take awhile to overcome. I still fear it and am usually quiet as others think I dwell on nothing. I am so glad of this website because you all know the fear is always there and others just think you should stop thinking about it so you keep it all inside which causes more anxiety. Like all of you, we survived this cause I often think It could be me. That is what they call survivors guilt. So it is refreshing to listen to other stories Thanks for being there I am so grateful I am alive. God must not have needed me yet.

  12. Cyndi Manka says

    I have what they call severe DVT. I have complete blockage of my deep vein. It started developing in March of 2007 but it wasn’t apparent until July 6th. 9 years later it’s been very difficult living in pts. Post thrombotic syndrome. Swelling, pain, bulging pelvic and leg veins. Lots of inrs. Cellulitis. But I’m great full for life, God and family!!

  13. Thank you for this site!

    September 28, 2015 I was admitted to ICU with a DVT in my left leg and a saddle bilateral PE with a severely dilated right ventricle. I thought, in fact I was told by the hospitalist, in three months I wouldn’t even believe I was ever in ICU. WRONG! Once the three months came and I wasn’t “back to normal” I decided it would be more like six months. Wrong again. I will be six months out from my PE here in a week and I don’t anticipate any major improvements in that short of time. Even though follow-up CT scans and an echocardiogram show the clots are dissolved and my heart is healed I still have chest pain and am dealing with some tachycardia. I am currently working on getting doctors to look into these lingering symptoms.

    At this point I don’t think I will be “back to normal” and I am no longer going to struggle to get back to the old me. I don’t say that to discourage anyone but for me that person that walked into the ER on September 28, 2015 actually did “die”. I absolutely did not leave the hospital the same person and even when I left I knew I wasn’t the same and I explained that to family and friends. They assured me I would be back to the same person it would just take time. But the reality is I don’t look at ANYTHING the same. At the time this happened I was pursuing a second degree so I could get my CPA license. Now I have absolutely no desire to deal with the stress of such a challenging curriculum. I would like to take more classes, maybe even get my Master’s, but where that leads me in my career isn’t that important to me. Money and career success aren’t number two in my life anymore. Spending time with my husband is so much more important and these days I resent anything that gets in the way of that.

    People love to point out to me that Serena Williams and Chris Bosh both had PE’s and are back to their same level of athleticism, but I don’t think that means I will be back to my old self physically. First of all, I was barely in shape before the PE. I do recognize I could be even better if I continue to make nutrition and exercise a priority. Then again, sometimes the body goes through so much trauma that things just aren’t ever quite the same. I had a lot of strain on my heart and elected to not have clot-busting drugs administed so maybe my body will just be weaker than before. I don’t feel that means I can’t still enjoy life but things for sure will always be different.

    I have gained a much deeper relationship with my husband and I absolutely cherish him. I have lost my best friend who I never ever thought anything could come between us. I regularly talk to family members I haven’t spoken to in years and don’t speak to family members I was close with. Life happened and so much has changed. Good and bad.

    Sorry to ramble on and on.

  14. I had mine in march of’12. I had small clots and was hospitalized for two days. I had bronchitis, then calfpain, was assessed for DVT Tuesday, but pain got worse until I could not walk. I tried repeatedly to be seen in urgent care, but was told that unless I had an injury, I could not be seen there, which was BS.

    Friday, I called my boss because my leave for bronchitis was up….it was end of the day, and I told him that I did not know what to do….I could not walk and they would not see me….he was very firm that I sounded like shyte, and if I could not walk, I needed to be seen right away. I called, they had a dr call me back, who got me into urgent, but pretty sure she also talked to physician that would see me. I went in and he saw me for about a minute before he sent me to ER….he’d had the wheelchair and orderly waiting when he came in. My boss probably saved my life.

    I had partial pneumothorax, atelectatis, plus the clots. I now have bronchiestatis, difficult to control asthma, recurrent pneumonia. I regularly get a CTscan to check things….

    at the time, both of my parents had had cancer and I had pretty serious mental health stuff going on as a result….when I came home, my psych NP started to call me to talk to me. I was pretty much a wreck, and she could tell, it got to where she called every day or two for weeks….she finally told me that PE IS AN INSULT AND TRAUMA TO THE BODY AS SERIOUS AS A CAR ACCIDENT THAT PUTS YOU IN THE HOSPITAL. I don’t know what I would have done without her support.

    They never could get me evened out on warfarin. My INR would go up and down with my cycle….I had a cycle every 30 days or so, and bled for about 22 days….the equivalent of 2 pads every 30-60 minutes….I went to Europe and was seen in hospital in Dresden and then Berlin for follow-up INR because of bleeding.

    Finally, I continued to bleed, presented in ER 3 times as a result….the 2nd time was Sunday, my Hemoglobin was 12….my pulm called Monday to take me off Warfarin after 5.5 months, because I was getting weak from the blood loss….Thursday my hemoglobin was 7. Friday I got a blood transfusion, which left me a wreck. I was just going on family leave because my father had been given less than 30 days to live and I was going to help him in his last days. I slept for almost 3 days after transfusion, and finally Monday was up and about….we went to a movie to get me out of the house and my head…..leaving the movie, I almost walked into traffic because I was so disoriented….my walking and my intent directions were off by about 60 degrees. I was on orders after that not to walk on streets/sidewalks, no driving, rest, iron, etc.

    Then I lost my hair. I had hair that was 41 inches long and a braid the size of a cucumber….it went down to less than the size of my thumb. it took almost 2 years to start growing back and my cycles to normalize.

    I remember the crashing fatigue, that lasted 6-12 months. periodic stabbing chest pains worse than anything before going to hospital originally, I stopped going in for the chest pain after awhile.

    It’s been 4 years, and I still worry. my lungs are so sensitive, last year three pneumonias, at least 3 serious asthma attacks. This year, not as much asthma, but right now, home with one, it happened a week ago, I am nowhere near as solid as I should be after that time.

    My PE was idiopathic. They think related to the chronic stress of my parents’ cancers and pneumonia….we were all diagnosed with disease inside 6 weeks, I with the “worst case of walking pneumonia” my doc had ever seen.

    But all that, I had a head injury 18 months ago. I found that to be much worse in terms of recovery, return to exercise etc. I have post-concussion syndrome, attentional defects, wordfinding, speech, cognitive and expressive issues as a result.

    But yeah, won’t be the same ever again. I am losing my job because of relocations, and am looking forward to the time to just rest and recover hopefully both my mental and physical health to a point where my body can recover to a more normal equilibrium.

  15. Hi, this labor day will be a year since I had my pulmonary embolism. I am 51 years of age and will be turning 52 on September 18th. I am thankful that I will see my 52nd birthday. Last labor day will be a day I will never forget, that god awful feeling in my chest of not being able to breathe. I spent a week in the hospital receiving shots to break up the massive amounts of clots in lungs. I was given the Nuvaring to help with my hot flashes and it almost killed me. I don’t understand why they continue to give women these medications that can kill them. It is almost a year now and I still have trouble staying awake and find myself so tired all the time, I recently had another scan and it came back clear, but yet I have no energy and get scared every time I have trouble breathing, it has been a nightmare for me.

  16. I lay awake now at 11pm while the rest of my family sleeps, researching any and everything on PE’s. I’m scared I won’t wake up if I fall asleep. I consistently move my legs and am always checking for swelling. I’m also 23 weeks pregnant, so there is the fear for her life as well. It’s been 3 weeks since my first diagnosis and 1 week since I was discharged after 3 separate trips to the hospital. My new normal consist of counting down the next time it will be 8:30, both am and pm (injection time). I try to remember how lucky I am, how it could’ve been so much worse. I was getting ready to take myself to the doctor because I thought the chest pains were just really bad indigestion and I was hoping he could give me something stronger than Tums. I passed out on the floor before making it to the car. Nobody was home, so I’m grateful I woke up. I’m grateful I was in the house and not in the car killing someone else. I’m thankful I didn’t fall on my stomach and my unborn daughter is still ok. I don’t know how hard I hit the floor. My last memory I was in the kitchen and I woke up in the hallway. I’m still here and Im glad so many of is survivors have shared their story.

  17. I have sat in tears reading this as I have been so down lately. Since the dvt and pe 10 years ago and a second pe 8 years I went into a serious spiral of depression with severe panic attacks when ever I went out. Not specifically dvt/pe related but I read this and realise that I have been struggling to get back to the carefree girl I was before and it feels like I will never get her back sometimes.
    After the first pe I asked my bf to marry me, got a part-time job, went back to college at 28 and I am now a qualified furniture designer. 10 years on I am proud of what I have accomplished but still hate on myself everyday.
    My husband worries any time I feel unwell or have a nasty bruise from walking into a table or whatever (as we all do from time to time). He has been the only person there for me since I was 18 and I can’t thank or show him enough exactly what he means to me.
    Anyway I ramble on too much, just thank you for this post it has gave me a cry but also made me realise I am not alone

    • Terri Marie Gilbert says

      I had just turned 50 when I got my PE I am a competitive softball player And was shocked that it came out of know where I have since learned I have a genetic disorder inherited from both of my parents So I will be on blood thinners for life I am taking xerelto For the first several months after I got out of the hospital I had pretty bad pain in my joints and muscles Not sure why Maybe a side affect of the thinner I started taking Glucosamine Chondroitin Seemed to help alot Or maybe it was a coincidence Not sure.It has now been 9 m since my PE and I am having Chest pain and shortness of breath when I do most anything I am still playing ball and running But it is exhausting Seems like I got better Now worse again Very frustrating Lots of anxiety Not really sure why Just really hope I get better I feel like I’ve become a hypochondriac It was interesting reading all of your stories Glad we are all still here ❤

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