After I was first diagnosed with a blood clot in 2012, I was scared, lonely, and ultimately terrified of what would happen to me. Doctors and specialists were telling me repeatedly that I was “lucky to be alive,” but I was in so much pain and distress I felt far from lucky. I was grief-stricken with loss and heartache and felt nothing like myself anymore. Truth be told, I went through a long period of thinking I would rather not live to see another day if it meant the pain would end. The physical pain from my pulmonary embolism (PE or blood clot in the lung) and deep vein thrombosis (DVT or blood clot in my leg) was the worst I have ever experienced in my life. The physical recovery period was the longest I have ever faced in my life. If you don’t know what recovery from a pulmonary embolism looks like, read this post to find out more about it from my perspective.
In those early days, I searched the internet for more information about recovery – and disappointingly found very little, which is one of the reasons I decided to start this blog – to help other people like me. Today, there is much more information on the internet, but still, I feel a lot of resources are lacking, particularly when it comes to emotional and psychological recovery. Emotionally, surviving PE was devastating for me and I still struggle with anxiety, depression, fear, and guilt to this day, nearly four years later. So, what does recovery from PE feel like? Let’s talk about it.
Recovery from a pulmonary embolism feels overwhelming. I don’t know where to start with the overwhelming part of recovery because it is so – overwhelming. For me, it started with a complete change in how I cared for myself and monitored my health. I was diagnosed with antiphospholipid syndrome – a disease I had never heard of, let alone understood – and with that came a new routine of INR blood draws, weekly doctor’s appointments, new specialists, and regular exams. I had to manage a constantly changing medication schedule between myself, the doctor, and the pharmacy. All of these physical things transformed into an emotional upheaval that I was not prepared to deal with in addition to being physically ill. I had no idea what was happening or what was going to happen. In just a few days, I felt like I lost complete control of myself, my thoughts, and my life, and there was no conceivable way to regain control. In fact, there would not be for the immediate months ahead.
Recovery from a pulmonary embolism feels frightening. I have never been more terrified than when I experienced my DVT and PE. Simply put: It’s scary to hear you should have died or that you almost died or that it’s a wonder you are still alive. It’s just as frightening to hear there is no immediate resolution to your situation other than to wait and see what happens.
Recovery from a pulmonary embolism feels lonely. I was immediately isolated after my pulmonary embolism if for no other reason than no one I knew had ever experienced a PE themselves. I had no one to talk to about my pain or feelings. I had no one to tell me it would get better, or worse, or anything. I had no one to tell me if what I was experiencing was normal or abnormal. I was just alone. The more alone I felt, the farther into isolation I sank until I didn’t even want to see my family or friends. If no one could understand what I was going through, which is how I felt, it was better to be alone rather than spend the energy trying to explain a complicated recovery just to have the person say, “That sucks, when will you get better?”
Recovery from a pulmonary embolism feels anxious. I have always been an anxious person, but my anxiety skyrocketed after my PE – I felt like I was in a constant state of distress. My worry seemed limitless: Was I having another PE? Would I have another PE? Would I survive another PE? Would my husband or dad or sister or friend have PE? Was that pain in my leg a new blood clot? Was the pain in my head a blood clot? Was the bump on my arm a blood clot? Was there a blood clot somewhere in my body I didn’t know about? What if my leg stopped working? What if I stopped breathing overnight? What if I never drove again? Ran again? Worked again? Cooked again? Walked up the stairs again? The scenarios replayed in my mind constantly and sent me into a continual state of panic (read this post for more about panic attacks post-PE).
Recovery from a pulmonary embolism feels like grief. The discovery of a life-threatening illness or disabling condition and/or bodily injury are commonly overlooked causes of emotional and psychological trauma (source) and yet, they are legitimate sources of trauma. Surviving a blood clot – remember a DVT can cause a PE which is life-threatening – is a traumatic event. It is normal to go through a grieving process following trauma because you have experienced loss, no matter how temporary, and regardless of if you ever gain those losses back. I felt like my whole world and identity were lost – I lost my ability to run, my job, relationships, security, and trust in my body, to name a few things. This loss was devastating emotionally, not unlike experiencing the loss of a loved one.
Psychological and emotional reactions to trauma can include but are not limited to feeling: sad, hopeless, numb, disoriented, withdrawn, confused, anxious, fearful, anger, confusion, irritable, mood swings, disbelief, shock, guilt, self-blame, survivor’s guilt, paralyzing fear, trouble relating to others and/or difficulty concentrating (source). You are normal if you feel these things.
A lot of bad feelings, right? Absolutely – overwhelming, frightening, anxious, and incredibly sad feelings. The better news is, there are some things you can do right now to help cope with these feelings. In time, I have found the feelings get better. I no longer experience extreme fear, loss, or isolation. And while I’m still working on some things, I am hopeful that I will continue healing.
- Talk to your doctor and ask questions. Do not be afraid to ask your medical team for assistance, answers, medication, or a referral to speak to someone about what you are experiencing or feeling. Some things you can do now: read about DVT and PE; make a treatment plan with your physician; take your treatment plan one step at a time; read about other people’s experiences with DVT and PE.
- Don’t isolate yourself. Find someone who understands, which is not easy. Some things you can do now: Join the BCRN discussion group on Facebook; find local support or social group; and in doing so, help someone else understand their feelings through sharing your own experiences.
- Accept the process. For me, anxiety is lessened by the fact that now I know the signs, symptoms, and risk factors for DVT and PE. If it happens again, maybe I will be better prepared the next time. Some things you can do now: Familiarize yourself with your risk factors and talk to your doctor about ways to reduce that risk; allow yourself to feel anxious; find an activity that helps you feel calm (I like to listen to music or write); be patient with your feelings.
- Take care of yourself. You survived, remember? Your body and emotions need some tender loving care to get through the recovery period. Some things you can do now: Allow yourself ample time to rest; break large tasks into small, manageable ones and congratulate yourself as you achieve them; consider seeking professional guidance (that’s okay) to talk about what you are feeling; take steps to reduce stress, eat a well-balanced diet; keep moving, even if it is from your seat; engage in your follow-up care; do something you enjoy.
- Treat yourself kindly. It’s not a race to get better – and your body and emotions may need more time to recover than you want them to. Some things you can do now: Be aware of the way you talk to yourself; allow yourself to acknowledge what you are feeling – it is okay to feel this way.
Reader Writes In: What does recovery from a blood clot feel like for you? How do you manage or address your feelings?
There is hope for healing and you are not alone,
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It is now March 2016. One year ago exactly, I was in the ER with a Pulmonary Embolism and shortness of breath. I was so weak I couldn’t sit up straight in the wheelchair at the hospital. The ER doctor asked me a few questions, told me he thought I had a blood clot in my lung (which I told him I didn’t think so!!!) but he did the ct scan anyway with dye. My clot was large and like a long string. I was in the hospital for one week until they got my Coumadin stable. That was the easy part. Coming home, I could not do anything for myself. Luckily my husband is very healthy and he took over being a caretaker to me 24/7. I was on oxygen 24/7. I couldn’t shower, comb my hair, cook, shop, or any or those regular everyday things I was used to doing . I was a invalid. I had an LPN coming to my house often to check the INR, an RN came often to check on my progress, physical therapists came twice a week. At first, they were skeptical that I would be able to totally recover. (they told me this after I had finally gotten back some strength). It was SIX months. We were retired so we just took it one day at a time. I was very frightened. One night I asked my husband “Am I going to come out of this ok??” He said yes (of course) What made me ask was that I couldn’t even roll over in bed or get in or out of bed by myself. I thought I was a “goner.”
One year later: doing much better, but let me tell you: you do not recover fast from a blood clot. There is a lot of damage done to your insides and that has to all heal up and it isn’t fast. It also takes time to get strength back and do NOT push yourself for this. I know a lot of you are crazy-athlete/types and want to get right back on that horse (running, climbing, biking, etc) but don’t do it or you will only make your recovery longer. Be kind to your body. Walk a little, swim a little, and then do a little more and more. Even tho’ after one whole YEAR, I am feeling better now, I am not the person I was before the PE. My mind still has that Coumadin fog once in a while when I can’t remember a name, and I am always worried I’ll have another PE.
Be kind to your body and get back into life slowly, please. Get help if you need it.
Read the posts by other PE survivors – it helps a lot. Joan
hi sara me again bad day today woke up and felt like the feeling of haveing another dvt swollen leg funny feeling in my ankle feel so scared but am still on rivaroxiban and have been since i was diagnosed in November hpe u got sum reasurring words for me just feel hopeless atm thanks in advance sara x hpe yr well as well x
Hi everybody! It has been two months since my PE. I had a call last week from my Home care case manager (socialized heath care is a tax on the people in Ontario and is not free) who has absolutely no sympathy or empathy. I told her that due to the recent surgery to replace a blocked femoral artery I am still in constant consistant pain. I also said that I am in constant fear of those pains in my arms which moves from right to left, the month long swelling and pain in my leg, the pain in my incision, that pesky cough and the shortness of breath from moving around the house or getting stressed out or by simply talking to much! Her response in a not so nice manner was “well you have to deal with the anxiety and take pain killers, and further I am visiting you on Friday when your nurse is there because you no longer require services” And this from an R.N. with a degree in nursing who has obviously lost her calling.
I would like nothing better then to go for a 10 mile hike–if I could get my boot on my swollen foot, cook an entire meal for my family, bake bread, walk my dog, go shopping. You know, be nack to normal. This has aged me 20 years!
I am so glad you have addressed the emotional side of this dreadful condition Sara! I think we have been spared so we can advocate and teach people that anybody can have a DVT or PE. Some might consider that they too could be on the receiving end of health care one day. I have printed off your email and will be sending copies to the case manager and her manager…who echoed the same. I ended my conversation by saying I will not be bullied! Thank-you Joan for sharing your story, I am going through a lot of the same issues and concerns.
Warm regards, Anita
hi sara had this feelin b4 like bubbling and my veins hurting been to a&e so many times and they just say yr already on blood thinners thats the treatment we would give u anyway just feel a pest have a doctors app on monday will speak to her about this then i just wanna stop feeling frightened all he time every time i get an ache or pain am wondering if its another one am sitting typing this now and my legs are bubbling away horrible feeling swollen ankles calf everything feels swallen 🙁 wen does this feeling go ? hpe yr having a gud day sara yr so gud answering these post 🙂 x
Hi, I have those same feelings in my dvt leg from time to time. I don’t know if this will help or not but try some magnesium (that’s the only name in the title as there are other kinds of magnesium out there). I take 250 mg with something (food item or milk) that has calcium in it. I sometimes experience leg cramping as well. Magnesium and tonic water. Hope this helps.
Hello everyone,
I just was diagnosed with my third clot. First one was 18 years ago after a knee surgery. Was on heparin shots then Coumadin. Then I had my second one 15 years ago during my pregnancy, but was put on Lovenox injections and then Coumadin. I have not had one in 15 years until a few days ago. I was told it was genetic which does run on my Mothers side. So before this las clot I had the symptoms a lot of you mention or experience. I ended up on pills for the anxiety. It is scary, more now than ever because it was not caused by something but just came out of nowhere. I thought I pulled a muscle but with my history I wanted to be safe than sorry. Well thank god I did, it was behind my knee and up my thigh, about 3 1/3-4 inches long. I saved my own life. So yes it’s hard, it’s scary and you don’t feel the same or Woody is it going to happen again. All I can say is educate yourself and know the all the signs and risks. Don’t stop living, just be aware from your experience. Because I was I am here now. Yes on a blood thinner the rest of my life, but I’m here and so are you. Be strong and live life full, even if you have to have changes remember your here now and that counts. Good luck to all and just breathe .
Hi Jen,
I totally understand where you are coming from with the comments about feeling like a pest when you have real, genuine concerns that you might be experiencing symptoms of another PE.
After multiple bilateral pulmonary emboli (unprovoked, so, without a DVT) in August 2015 and because I have also been experiencing other gynaecological illnesses, ongoing to this day, last winter, after putting it off for ages, I experienced quite a severe and ongoing pain in my leg. I didn’t go to hospital straight away but when I visited the Emergency Room, I had a really impatient, rude and short tempered doctor who, blatantly told me I was wasting his time. I was upset and nearly walked out, but didn’t. I waited for his final diagnosis and he discharged me without even going through any sensitivities to particular drugs and very dismissively.
As I waited for my (absolutely brilliant) friend to pick me up, in the very early hours of the morning, to give me a lift home, I sat near the reception area and began writing how I felt about my treatment on the feedback forms they had provided earlier. One lovely woman on reception asked me if I was OK, as she could see I looked very upset (I am not usually like this – I fight injustice all the time and am a “The pen is mightier than the sword” type of person, always willing to stand up for my own rights and those of others) – however, the physical and mental exhaustion of all the trauma of my illness, my dear sister’s recent death, financial and personal problems over that last few months must have got to me.
The receptionist asked if I wanted to make a complaint, after I filled her in, briefly on my appalling treatment and led me to the Matron in charge, who took down my complaint. To cut a very long story short, I put in an official complaint about the hospital, citing the seriousness of the incident for anyone being lucky enough to survive something as serious as a PE. The head of the unit rang me at home and apologised on behalf of the consultant, who admitted he had been short with me and had been “having a bad night on shift…”. I accepted this apology, but was angry that anyone in a similar position should be made to feel like a timewaster, when the message from my own General Practitioner surgery and other specialists is to be vigilant, not to panic but – as I often told callers to the national cancer line I worked it, early last year – “any new, changing, or worsening symptoms, seek medical advice, immediately.
I am so lucky to have a lot of support and an absolutely great GP; however, after being told I needed to be on daily Tinzaprain injections, trying and failing on warfarin and having such dreadful side effects I often felt like I wanted to give up, I made the decision to try natural health alternatives to the anticoagulation medication I was prescribed. Three weeks now and I am not experiencing some of the major issues I had, except after a normal cold, I seem to have developed allergies and have severe mucus production on my chest and throat and struggle to sleep due to coughing and throat clearing…I cannot work at the moment due to such severe exhaustion, constant iron deficiency and the symptoms of severe back and joint pain and muscle spasm and “fusing” as diagnosed recently.
I wish everyone posting the very best recovery and luck for the future, that we are all able to live as active and happy a life as normal.
This is a club no one would ask to join; however, blogs and articles such as this are fantastically helpful, so thank you, everyone.
Two months since my PE and I am back in hospital, short of breath and chest pain. I can honestly say I have had no improvement in this time and I guess it is only now sinking in what an uphill battle I have ahead. Time to stop trying to make my body heal, time to let it heal. I have been looking at this like getting fit, do a bit more each day and I will get better. My body needs to set its own pace and I have to listen.
It is now well over a year since my PE and I have not recovered. I am still breathless on exertion, have heart palpitations and chest pain. I have had several opinions but no confirmatory diagnosis – a GP thinks I have permanent damage to my lungs from the PE, a nurse says I have underlying COPD from asthma and that the current issues have nothing to do with the PE. I’ve been referred back to the respiratory medicine consultant. This uncertainty is really upsetting. During the day, I am upbeat, at night I lie in bed and cry. My father died at age 63 (my current age) from institial pulmonary fibrosis. I’m scared. But today, I did something positive! I went to my first session of pulmonary rehabilitation – gentle but rigorous exercises to strengthen my breathing muscles and cardio. There were two people just finishing the program and both said I would feel like a different person at the end of the six weeks. So there’s a light at the end of the tunnel!
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Doctors do not seem to care , the pain and anziety is too much to bear..I’m 40 4 clots. Weak and so tired . I pray every min to God to make this better but feel so sick , I agree I feel 30 years older. My chest always hurts ,anziety I hope . All I do is cry ..not because I’m sick but because no doctors in maine seem to care , always being dismissed like my pain n illness doesn’t matter..idk what to do I feel helpless and lost , who am I , a month ago I could tell you , now forget it , my head feels strange , nautious and dizzy , eye and ear pain my lungs hurt too , legs the worse can’t sleep..all I do is eat that’s not healthy either but as long as I’m eating I feel tiny bit better ..I’m seriously scared beyond death. I’m having such vivid day dreams in ten min sleeps that r scaring me even more as they are of bleed outs..why won’t doctors help me??
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Hi Sara,
I am a Sarah, too. I just experienced a PE a few weeks ago. My husband and I found out we had a missed miscarriage (our first pregnancy). We went in for the ultrasound and learned the baby stopped developing, but my body still thought I was pregnant. We scheduled a d&e for the following week after July 4th. On that Friday, for a pre-op appointment, we learned my A1C was high and I was diabetic. Then, four days later while grocery shopping, I passed out in the store parking lot. Thankfully, I collapsed behind an off duty EMT and I was with my husband. I seized and got banged up from the fall, but thankfully I had care immediately. An ambulance came and I was taken to the hospital. I suffered from shortness of breath, but I never had any pain.
I stayed a week in the hospital and had many doctor’s visits and eventually the d&e, which allowed my body to recognize the end of my pregnancy. Because I never had pain during this experience, doctors believe it originated in the pelvis. The massive PE did not cause any pain in my chest. I was fine, and then I was not.
While I have just started the recovery process, it is scary and frustrating, and I am impossibly heartbroken. I had never been in the hospital. I am relatively healthy and active. I am young. I have had all major tests that they can do, and everything has come up negative. Once I no longer have active clots, they will run another battery of tests
It is scary because right now there are no answers as to why any of this happened. Everyday I am thankful I survived, but waves of fear and guilt come crashing down sometimes. Will it happen again, and will I die? How long will it take to feel like I can do again? How will this affect my job (I teach)? Does my husband actually feel okay taking care of me when we are so young? (Of course he does, but I have always been the nuturer.) There is so much uncertainty. This breeds frustration. I’m used to being independent, but now I fear being alone. I cannot do all I want to do. I worry about collapsing in front of my students and the fear that will cause them, and I become frustrated then for feeling weak. And every day, I am reminded of my loss, and it is a grief I have never felt before that breeds it’s own myriad of struggles.
I am at the start of recovery, but I can feel that it will take time. Just as my lungs and heart need to heal, so does my mind and soul. I just wish it could happen faster, and I wish for answers.
This is hard for me because I was diagnosed with preeclampsia and hellp syndrome at 7 months of my pregnancy. I didn’t know what that was. I was terrified. About a week later I had to get an emergency csection. Everything went well until a few days later. My legs started hurting. I went to urgent care because I could not walk. I was diagnosed with PE and DVT. Both lungs and both legs. All new terms for me while I had my baby in the NICU. I was a mess! I’m still on blood thinners but I’m scared to get out of them. So many things happened to me that I still feel overwhelmed. I can write a book. When reality hits (when I see the doctors) they always tell me wow you could have died from 3 things. Your lucky to be alive. I never knew so many medical terms in my life. This is just a bit of my crazy story…
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I was diagnosed with a blood clot from my ankle to my groin 2 months ago due to pregnancy I was diagnosed at 36 weeks. My first symptoms appeared a few months before that.. my left leg swelled while working all night but my right leg was slightly swollen too so I figured it was retaining water from pregnancy an mentioned it to my ob an they didn’t think much of it. It got to the point I couldn’t walk without severe pain it hurt so bad to move.. I went to the er and they told me it was my nerve in my back from the baby.. they told me go home use heating pads an hot showers to help. I went home that day and got in the shower and put the hot water on my leg near my groin.. by the time I got out of the shower my leg had swelled twice it’s size an was exstreamly red.. I was dizzy an felt I was going to faint.. I seen fuzziness everywhere. My boyfriend tried to get me to relax with a heat pad an my legs up and I said no I need to go to the er again right now.. so he took me. I went to another er and they thought I had an infection in my bowls and wanted to do a CT but my obgyn said no that they could only do a ultrasound.. the er I was at didn’t have ultrasound after 5 so I was told to go back to hospital I was going to deliver at an they gave me a transport there. I arrived there feeling so mucb pain they gave me pain medication and it helped and did an ultrasound of my stomach an baby and kidneys an said all looked good but I was to stay overnight to wait for vascular to check my leg just in case.. that night I went outside and I was short of breath an dizzy I didn’t think it was anything but a side effect o painf medication. The next morning my blood clot was diagnosed an they only kept me one night after they found it.. they didn’t check me for PE and said the lovonox would help. After I went home on injections I was back in the hospital a few days later with worse pain an swelling they put me on pain medication and told me I will be on bed rest till after I delivered in 3 weeks I was set to be induced but made it 3 days before the date an was in labor a half hour after my blood thinner injection I was supposed to stop the day before induction. So I had to have my blood on standby and many nurses an doctors for possible blood transfusion. I was also diagnosed with chairi malformation a few months before this so that was a risk factor as well.. I was told I may need brain surgery with that after I had the baby. So the blood clot just floored me completely.. I delivered a healthy baby boy 7 lbs all natural because they wouldn’t give me pain medication because labor was too far along by the time I got to the hospital and no epidural because i had blood thinners in my system. I couldn’t push with the feet down on the stirrups because of the clot and had to be carful with my head as well so I ended up having an episiotomy it hurt so bad.. but I made it threw it and I am now 7 weeks postpartum and I was switched a few weeks ago from lovonox to pradaxa but would like to switch back because my leg swelling an pain is worse with the pradaxa. I always have chest pains and have had a few CTS because of chest pain an rapid heartbeat and they was all clear. In the past few weeks I experienced a cough and soreness in my chest and tried two different antibiotics and didn’t clear it up. I tried going back to work an was cleared to by two different doctors and my leg swelled so bad I was in the er again a few days ago they did another scan an said my dvt is not entirely down my leg anymore and they couldn’t compare to my old ultrasound BC rhey didn’t have access to it.. so I have to wait for tomorrow for that.. I’m hoping it’s all good news and I can also go back to lovonox. They also did a CT on me an found a spot on my right lung so tiny it was nothing to worry about and was told it was not a blood clot but a spot and alot of people have them but it never showed up before. I think it was from a PE that healed and wasn’t diagnosed. I feel weak alot.. I think from blood thinners.. I forget everything I feel my mind is going half the time and I had to be put on ativan for aneitxy. It’s so difficult to heal with a newborn baby and trying to work. I lost my house because I couldn’t afford to work an pay for it anymore we had to move in with my boyfriends parents.. I can’t get up with my son without swelling an pain.. I can’t work without ending up in the er.. it’s just a nightmare. And it’s been going on three months.. I was told I might be down 6 months.. I only have to take blood thinners 6 months and I’m done. Its been going on 3 but now I’m worried my leg and strength will never return again. I too underestimated the recovery. It is very depressing and heart breaking.. especially with postpartum too.. I was also placed in Zoloft and I have an appointment for counseling and mental health for next month.. I hope I make it. I also am seeing a new vascular doctor next month to help me maybe find the right blood thinner and access my leg further.. and my chest pains hopefully I find help.. hopefully I make it threw this.. it will be three months in a few more weeks and I will be halfway there.. god bless and help all of you struggling like me because I know it’s a nightmare maybe it can help someone reading this just knowing I’ve made it this far threw labour an having a newborn and mine was the entire length of my leg.. my obgyn of 35 yrs said he never seen one that big.. if I made it this far.. maybe you can too.. it hasn’t been easy.. not one day… it’s been a battle and will continue to be but I’m hopeful that it does get easier.. as long as you listen to your body an don’t push things.. don’t work if your leg doesn’t let you.. it will just make you end up back in the er or doctors..
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Sara,
This is a perfect article. Unless you have been through a life threatening PE/DVT you cannot understand it.
I’m glad we are both here. I am comforted by this website and the FB group.
Thank you,
M
Hi , I had a blood clot in both of my lungs in a March last year , 2017. I was perfectly healthy up until this time, just had a pain in my left calf. Doctors at my local hospital found out after a very long 8 hours of scans etc, that it was a PE . I’ve never been so scared in my life, I’m only 49. It’s taken a long time to recover, emotionally and physically. People don’t understand what it’s like if they,ve never experienced it. My bosses at work go crazy if I’m off sick, I’m having health problems at the moment, high blood pressure, I have a constant cough. The doctors have finally decided to send me for a chest X-ray today, which I’m worried about too. OMG, some days I feel like staying I’m bed and not getting up again.
Thank you for sharing this story.