What to Expect During Pulmonary Embolism Recovery
Radiologic studies of pulmonary embolisms
Recovering From a Pulmonary Embolism: The Beginning of a Long Road
Recovery from a pulmonary embolism often begins in an emergency room or an emergency squad. It begins when the patient has a diagnosis of pulmonary embolism and is given blood thinners to stop new clots from forming. If the patient enters under extreme duress, it can be a very scary start to recovery. If the patient finally has an answer to mysterious symptoms the diagnosis may be a relief. With treatment, the body has a chance to heal from pulmonary embolism without the threat of new clots.
On July 18, 2008, I found myself in the emergency room of an area hospital. This was only the second time in my entire life that I had been a patient in an ER. I knew, though, that I needed to be there—and that the ER doctors would likely save my life.
It turned out that I had a very fatal condition known as a pulmonary embolism (PE). What I didn't realize then was that my experience in the ER, and the subsequent hospital stay, were the easy parts of my diagnosis. I had always thought that hospital stays would be miserable and that going home would be a relief. While I was glad to get home, the months following have been strenuous.
While in the hospital I researched my diagnosis. I quickly found a lot of information about pulmonary embolisms. Page after page contained symptoms of a PE, the dangers of embolisms, and the treatments that were available. Other than treatment information, however, I found very little information about what the recovery itself would be like. I did not know what to expect after my PE. I did not know how long recovery would take or how recovery would alter my life.
Very General Information About Recovery
- Everyone will find their recovery to be unique. Like many disorders and diseases, pulmonary embolisms can be of differing severities. There are people who return to work in a few days, as well as people who die. It is a huge spectrum!
- There are a lot of ups and downs. Symptoms of the embolism will come and go for a long time after the embolism is found and treatment is initiated. It is not uncommon for someone to go three months without any problems and then find themselves with pain or shortness of breath again.
- The symptoms that helped diagnose the embolism are some of the same things that will be experienced after the diagnosis of the embolism.
- Symptoms should be checked out by a doctor. You need to know that they are not a return or exacerbation of clots in the lungs. Also, some symptoms interfere with living or are dangerous. These need to be treated so you can go back to living!
- Some symptoms are side effects of treatment.
- After a pulmonary embolism, the body spends a lot of energy on healing the heart and lungs. This means that you will be more fatigued. You also will get sick easier, stay sick longer, and find that you get more sick feeling when you are sick.
The video below demonstrates using household items why a pulmonary embolism is so serious.
What Is a Pulmonary Embolism?
A pulmonary embolism is when a blood clot lodges itself in the lung or lungs. The problem with this is that blood can't flow freely through the lungs. This prevents oxygen from reaching the lungs and makes the heart have to put more effort into pushing blood through the lungs. This makes pulmonary embolism a very serious problem.
Many people with pulmonary embolisms never get a diagnosis until they are being autopsied. Sudden collapse and death are often attributed to an embolism. Death can occur even without any warning symptoms. The blood clot breaks off from someplace and blocks the lungs. If you are diagnosed with a PE you are one of the lucky ones. Pulmonary embolism recovery can be long if you have had substantial damage to your lungs or heart.
The following video is a medical lecture about why a PE may happen and what it can do to the body.
Immediate And/or Urgent Care For Pulmonary Embolism
Immediate care will vary greatly. Patients with pulmonary embolisms may enter the hospital on their own volition. Walk in patients tend to be more stable, have less heart involvement, and smaller clots. These patients may have simple complaints of chest pain or shortness of breath. On the other hand, some patients enter the hospital in an ambulance because they have collapsed. Some patients die before they even know that they have a PE.
If the patient is highly unstable, doctors will run tests to determine the cause. As soon as the PE is discovered doctors may decide to use clot busters to clear the clots so that the patient can get oxygen back into the blood. Clot busters are a high risk treatment but can be a lifesaver for an unstable patient.
Those who are not unstable will have calmer diagnosis and treatment. The hospital will take vitals and possibly do any of the following: EKG, chest x ray, D-dimer, other blood work, contrast spiral CT, ultrasound, oxygen measurements. Once the PE is found, the patient will likely be placed on bed rest until the legs can be scanned to check for clots that might migrate. The patient will be started immediately on blood thinning medication. This is typically a heparin type drug for 24 hours and then the addition of warfarin.
When I entered the ER my doctor had called ahead of time. They did the EKG, blood work, and chest x ray. My oxygen was at 94%. My resting pulse was at 125. My primary doc was consulted by phone and a spiral CT scan with contrast dye was ordered. This scan showed multiple, large clots. Immediately I was hooked up to heparin and put on bed rest. That evening I was placed in the step down unit.
Intensive care had no beds and I was stable enough to be in the step down. I remember being woken around 4 am by a lab guy looking for blood. I stuck out my arm and immediately went back to sleep. 30 minutes or so later the nurse came and shut down the heparin drip for an hour as I was too high. Another hour later she was back and it was placed back on. Each time someone was in I had to get a temperature and blood pressure reading. That was my first night
The First Few Days in the Hospital After a Pulmonary Embolism
The first few days after your pulmonary embolism will vary based on how severe your embolism is and what damage the embolism has done. All pulmonary embolism patients should expect to have additional tests. These tests should include a doppler (ultrasound) of your legs (both calf and thigh areas) to check for additional clots and an echocardiogram to evaluate any damage that may have been done to your heart.
If you have never been tested for clotting diseases and conditions in the past, I highly suggest that you insist on a hematologist to run a battery of blood work to determine if you have any clotting conditions. Some of the blood work will need to be done after your clots have healed and you are off of blood thinners because blood thinners will skew your body's chemistry and invalidate some types of blood tests. Any DNA tests for clotting conditions will be able to be done at this time as DNA is not affected by blood thinners.
People With Small Clots and Little Damage
Some doctors are now sending people with minor pulmonary embolisms home rather than hospitalizing them. This group will receive an injectable low molecular weight heparin until the Coumadin is at a safe, therapeutic level. Those with minor embolisms may also remain in the hospital on heparin until the Coumadin is therapeutic. Either way, those with minor embolisms may be lucky enough to return to work a week or so after discharge.
Once You Are Safe and Stable
Once your medical team has decided that you are safe and stable, you may be allowed to use the restroom. Doctors need to make absolutely sure that there are no additional clots that may dislodge from walking before you will be allowed up. The leg ultrasounds mentioned above will provide solid evidence on the risk of more clots lodging in your lungs. This will give you a lot more freedom and will be a large step in your pulmonary embolism recovery.
The ability to walk means that you can do toileting with more independence and will no longer have to use a bed pan. Bed rest will remain a large part of your day. When you will be encouraged to walk, the unit is based on what residual heart damage is found and how your body is faring. If your blood oxygen and heart rate look good, you will begin to be allowed on supervised walks of the unit. Walking will help you prepare for going home. Walking will also help to prevent new clots.
When You May Be Leaving the Hospital Soon / When Warfarin Is at a Therapeutic INR
As the days pass you will begin to feel like you are living with vampires. Blood work is checked day and night to keep your heparin dose at the correct, safe level and to see how your warfarin treatment is progressing. The warfarin dose is carefully adjusted. The goals a patient must reach in order to be discharged are:
- No residual dangerous clots in the veins
- A healthy heart or at least one that is on the mend
- Good oxygen saturation in the blood
- Pulse and blood pressure within good limits
- Strong vital signs
- No signs of internal bleeding
- No significant worsening of symptoms
- At lest 72 hours on warfarin and heparin
- Warfarin at a therapeutic or close to therapeutic range
The big question that many people have is "what does therapeutic range mean?" Warfarin has to be at a fairly precise level in order to work well. If you take too much warfarin you will be more likley to have a significant problem with bleeding. If you take too little warfarin you are likely to develop blood clots. For many people this will mean an INR between 2.0-3.0. INR stands for "International Normalized Ratio". INR measures how long it takes your blood to begin to clot. There is no exact science to warfarin dosage. You will slowly have your warfarin increased until you are in range.
Your body may need a higher dose of warfarin than someone else. In these cases the patient will stay in the hospital for a longer period of time. My total stay was 11 days. I left with an INR of 1.8. I was given low molecular weight heparin to self inject until my primary care doctor could get me to therapeutic range. My vitals were fine and I was safe. The hospital felt that I would be safe at home as long as I continued a heparin type drug until my INR was high enough.
Coming Home
You will need to have an appointment set up with your primary care physician or hematologist that is monitoring your case. A doctor will need to see you soon after discharge and a few days a week until your warfarin dose pattern is established. For the first few weeks you may be going once a week or so.
Some people bounce right back and return to work quickly. Others will find that they have a lot of healing to do. Here are some things that you might experience once home:
- Fatigue
- Chest pain
- Fast heart rate
- Breathing difficulties
- Anxiety
- Depression
- Symptoms that remind you of your PE
While these symptoms are common you should not dismiss them. Talk to your doctor. If any of them are severe, or you are not sure whether they resemble a clot or recovery, you should go to the emergency room and tell them that you had a recent PE. They can test you to see if there are any new clots that have shown up.
Also, if you aren't feeling well work with your doctor to get better. This may mean an exercise plan, gradual return to work, or medications to help specific symptoms. Anti anxiety medication as well as asthma medication may help you depending on your circumstances. Be your own advocate until you feel like you have gotten the best care that you can get.
I recommend getting a copy or your tests and files from the hospital so that you have them as a baseline for the future.
What Restrictions Will I Have While Recovering From a Pulmonary Embolism?
Most people report that there are no restrictions once they are home. Ask your doctor if you have restrictions but know that often exercise and sexual activity are safe as long as you listen to your body. If you are out of breath or your heart is racing, take a break or slow down the intensity of your activity. Exercise may help prevent further clots so don't give up on it.
How Long Will Recovery Take From a Pulmonary Embolism?
Recovery will depend on the severity of the PE and any possible heart damage. I was out of work for around three months. I was told that a year out from my hospitalization I should feel a lot better. It looks like that was a good estimate for my body. I will sleep past 1:30 in the afternoon now without an alarm. I never did that before the PE. I also have an asthma like condition. The breathing problems from that cause coughing, mild shortness of breath, chest pain, and fast heart rate.
The irony is that the pulmonologist can't "see" this condition. Luckily my doctor and the ER doctor have found it and know how to treat it. In some ways, though, it makes me sad. I wonder if I will have those symptoms forever as a legacy from the embolism. The great thing is the fatigue is getting better every day. This is June. July was my hospital admission. There have been a lot of ups and downs. I have been to the ER two times for shortness of breath. Luckily, I was clot free both times.
I am finding that colds and other respiratory infections hit me harder and for a longer period of time. My heart rate is still higher than what it used to be, but it is down from where it was last July. I still feel chest pain on some days. I am still taking warfarin. I will go off the warfarin in July to have additional testing and to see if I can stay off of it. I am pleased with my progress as it has been a long road. Some people have a harder time with symptoms than I have. I am grateful that I haven't had excruciating chest pains or extreme shortness of breath.
Post-pulmonary Embolism Expectations
Anticoagulation therapy may last anywhere from 3 months to 1 year post PE. This therapy prevents new clots from forming. Your old clots will be dissolved by enzymes in your body or they will be sealed off like a pearl. Mine are all gone. Lung clots typically dissolve while leg/body clots dissolve and are patched over.
You can come off of anticoagulation if there are no serious clotting conditions and if you haven't re-clotted while on anticoagulation. If you clot again, you will go back on anticoagulation and will likely remain on it for life.
Pregnancy is still feasible. Look for a OBGYN that specializes in high risk pregnancy and find a good hematologist.
While traveling, take precautions to prevent clots. Drink water or electrolytic beverages, move around the cabin of the plane, take frequent rest stops in a car, consider prophylactic low molecular weight heparin injections, and possibly wear gradient compression stockings. Above all talk to your doctor.
If you are bedridden, sick, or in surgery make sure that a doctor knows of your history and take steps to prevent clots before they happen.
All in all, life won't change too much. Live with intention and appreciate your body. It survived a potentially lethal assault.
A Year Later, How Life May Look
I have had my year anniversary come and go. I am no longer as tired as I used to be. Many days I would say I have all the energy that I had pre-embolism. I am off of Coumadin. I started feeling a lot better when I stopped it. I have a cough off and on and shortness of breath. These have been traced to Vocal Chord Dysfunction and possible Asthma/reactive airway disease.
These do not appear to be caused by lung problems or lasting damage; rather, they may have been a result of the stress of the situation or my breathing patterns post PE. I have been tested for a large range of clotting disorders. I only have heterozygous Factor V Leiden. I drink more water, take 15 minute rest breaks when driving or traveling, and leave my desk for breaks at work.
I notice my legs more. I wonder if they have clots and find myself concerned that the twinge of pain is something more. So far, it hasn't been. I have chosen to see my hematologist once a year rather than dropping him entirely. When I wish to have a child, he will be an integral part of my medical team. So, there it is. I hope that this PE will be my only clot, but time will tell. Recovery comes. A year makes all the difference in the world!
And After Even More Time . . .
I have been thinking a lot about how blood clots change your life lately First, my grampa died. I look back at my clots and see my gramma's death as the possible starting point for my odyssey, so it is a very good time to discuss this.
I made a drive to and from Michigan to get stuff from grampa's house last weekend. I had to think about it . . . 3–4 hours there . . . will be working on my feet . . . 3–4 hours back. Okay, that means only one driving break each way. That isn't too bad. I should be fine. Then after the trip, I found myself scanning for signs of new clots. So far, there are none.
It got worse, though, a few days ago. I got a stomach bug. I was nauseous as anything. I laid in one position for literally 11–15 hours and only got up once. I was in bed for about 36 hours. I am now watching again for clots. I am wondering if I should tell my doctor. So far, no signs, so I haven't asked him. It should be fine. The dehydration from the ordeal was pretty bad . . . about 6%. That worries me as much as being stationary.
This is the life after clots. I can't tell I had them physically, but mentally, it will always be there.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Comments
Clive Almond on January 17, 2020:
This helped me a lot, I got my pe in the lung because of a broken hip surgery. It has been 3 months now , can anybody tell me if they have trouble laying down in bed as I get pain and lots of lung noise so tend to sleep more elevated also hurts more to lay on my right hand side.
Before the broken hip I was a keen road cyclist thinking nothing of riding 100 miles. now I get out of breath just on the excecise bike after 3 mins.
I am on blood thinner tablets and am due to go back to hospital for a check up in 3 weeks.
have been out of work for 3 months but that is also due to the broken hip recovery as well as the pe. I do hope all on this blog gets well soon ,I cant seem to see the end of it for now, just keep going.
Jesse Wilson on November 19, 2019:
This article really did help a lot. I was diagnosed with dvt in my right leg and bilateral pe in both lungs 3 months ago. Went to er because of severe calf pain, swelling and shortness of breath. After ultrasound and ct was put on heparin and kept for two days. Followed up with my primary care dr 3 days later. They all believe the dvt/pe were provoked by sedentary job and a road trip to California and back (15 hours one way with very few breaks). I now deal with shortness of breath many days, feel like I have the flu, chest pains, leg pain, headaches, dizziness, you name it. I’ve been to the er several times because of chest pains and they ran lots of blood tests and did x rays, I was told everything was normal. I’d reall6 like to have another ct scan done to see if my clots have resolved, but drs have said it’s no5 usually the way they do it. I’m going to demand it just to know, I have fear that while in the earliest staggers f recover6 I may have overdone i5 and thrown more clots .
Scott Clay-Poole on June 10, 2019:
Cause of clot as something not listed here: the ER docs asked if I had recently had (1) surgery, or (2) long plane flight. Neither, they scratched their head. After internetting, car crashes can be a cause. Bingo! I'd had a pretty bad bike crash on the same leg as the clot. So ER docs out there, ask about any recent bodily trauma. And to answer the question of how long before recovery, I'm in the middle of a year of Xarelto. And I wonder, why was the author not on Xarelto/Eliquis which seems easier to work with than the other blood thinners.
Jan Day on March 19, 2019:
Is there a support group for people in recovery from PE.
Jan Day on March 19, 2019:
Info helpful. Had massive truncated PE late Dec. Was recovering from chest cold. Woke up feeling like i wasnt getting enough oxygen. No pain. Husband made me go to ER. Doc did CT scan put me in the ambulance with heparin IV to next larger town to Hospital with a Heart/Pulmonary unit. Was told most likely would not make it alive. Docs amazed kept telling me they were witnessing a miracle each day I survived. All tests show no cause after brain, gastro, kidney and liver scans. On Eliquis now with some NAL liver damage. Never drank, took drugs or over counter meds in my life so most likely caused by anticoagulant medication. Quit smoking 30 yrs ago. Did have double hip replacement 3yrs ago with no problems doc put me on preventive anticoagulant for 2 wks following surgery. After surgery 40 yrs ago had a PE. No more problems again. Until this active and healthy 72 yr old with very large family no heart blood problems. Grandparents and other relatives live past 100.
Doing ok get tired but excercising daily. What scares me Ive been back in ER for what they call Sincope. Brain just shuts down. Both times at home. Nobody seems to want to deal with this or tell me what is causing it. Did have echocardiogram yesterday. No chest pain no breathing problems. Im worried. Does anyone have information on what causes sincope after a PE.
Jason on November 29, 2018:
Good lord, I thought I was soooooooo alone. I had a bilateral saddle PE the week before thanksgiving. they did an emergency clotbuster and put me on Eliquis now. follow up is in another 2 weeks. not used to even minor shortness of breath and I LIVE ALONE. the night it happened I was on my way home when i just didn't feel right. thought it was another anxiety attack but turned out to be something this dangerous. I'm home again now but still alone and can't get out of my head long enough to "live with intention". I'm trying so hard not be afraid. SO. HARD.
Amanda on November 26, 2018:
Thank you so much for your article! it's the most comprehensive one I've read and totally appreciate it!
I was diagnosed 30 Oct with multiple clots in both lungs. It was found out after a sharp GP noticed my high pulse. Was put on a Holter monitor and found that my average pulse was going 105, and peaked at 153. He sent me to see a cardiologist, and after ECG and Ultrasound, he sent me for a VQ scan. That's when I was told I had PE. I was not prepared for anything, as I drove around for tests on my own. I did not even know what PE was, and what it all meant. Went back to the GP with the results and was sent immediately to see a Respiratory Consultant. He advised me to check into the hospital, but the nearest hospital was a Private Hospital, and they needed a $20k deposit in case I went into Cardiac Arrest! So I chose to go home (honestly, I didn't know how serious PE really was).
Am on Xarelto (for next 6 months) and apart from the feeling of having something sitting on my chest whenever I lie down, I'm otherwise going about my normal routines. Had to cancel my holiday to Hawaii though. And to top off the bad news, they found 2 x 21mm gallstones, which I cannot remove as am on blood thinners. Doctors are happy with my progress. That's the thing.. they never really made a fuss about my diagnosis, that made my partner think that nothing will happen to me.
Question: any diet restrictions?
Karla on August 29, 2018:
A month out of bilateral PE. Both chronic and accute. What I have found is how taxing this is mentally. You learn to live with the physical symptoms and setbacks. But no one prepares you for the mental part of this decease. The constant fear. Trying to be objective of your symptoms and trying to figure out if what you’re feeling is what is expected during recovery or if it might be another one that could kill you. This is the hard part. Dealing with the uncertainty. You don’t want to be alarmed but how can you not when your heart is racing and you have chest pain. Thank you for this piece. I feel like I wrote it. I hope to be better this time next year. I’m looking forward to this
David on March 28, 2018:
Very many thanks.
Really great article that answers a lot of my questions about what I am going through (EP 4 months ago).
Good luck to you.
:-))
Melanie on December 10, 2017:
Diagnosed 2+ weeks ago with massive bilateral PEs. Placed on Zarelto. Vitals are good and ultrasound showed nothing. Hospital didn’t test for clotting disorders prior to placing me on blood thinners so can’t be certain of the cause. I just wonder which “hurts” I should pay attention to in the future. I have other chronic issues that would attribute to various aches and pains which I would normally ignore. My major symptom was shortness of breath and it took a few days to realize it was different from my asthma. I am not an alarmist, but wonder if I should be?
melina couto on December 04, 2017:
in 2009 I went for surgery to remove blood clots from both my lungs. Back then I had never heard of this condition and felt totally alone . thank you for this wonderful article .
Kristen on December 02, 2017:
Thank you, I needed this more than you know.....
Terry on October 29, 2017:
I was admitted to the hospital this past Wednesday after going to the ER with shortness of breath and pain in my calf. I was 2 weeks from my surgery and had just gotten a hard cast 2 days ago. The ER checked my vitals. Oxygen was low, blood pressure was up, heart rate was up and my skin was pale and cold. The began running test for PE and determined that I had Saddle PE. They then proceeded the treatment plan for PE.
Maria Marino on August 28, 2017:
I am one month out of very large bilateral pe blood clots and a dvt in my right calf. Just went to my Pulmonologist today for my follow up and he was very positive about it. I have been on drugs for my Rheumatoid Arthritis for 10 years and I smoked (hoping I've quit for good this time) and I'm obese. Had to fire my Rheumy bc of her attitude and lack of knowledge about the drugs I'm on. She decided to override what the Pulmonologist concluded and say it was my sedentary lifestyle. I work retail as a store manager 40-50 hours a week. Going back to my old Rheumy! The pain in my chest surprised me. For the first few weeks back to work if I did a lot of moving merchandise my chest would hurt as well as my shoulders. It caught me off guard, but luckily I'm Facebook savvy and found a pe group online to ask questions of long time blood clot survivors. Thank you for this post it definitely helped.
Nick Nichols on July 22, 2017:
This is one of the most helpful and straightforward pieces of information I have found. Thank you.
Lori on July 22, 2017:
I am 9 months post Surgical DVT/ Multiple PEs in both lungs (70-80 total). Today I still have quite a bit of SOB and my oxygen SATs remain between 94 and 96%. Like you I do have the chest pain mainly on my left side. I've been evaluated for pulmonary hypertension, CHF, COPD, and reoccurring PE/DVT. My most recent dx because of the SOB and chest pain has been bronchitis with left side pleuricy. Prior to my knee injury that lead to surgery, I was running 3-4 miles a day. Now I can barely walk 1/2 mile without my lower leg swelling and becoming quite painful along with the severe SOB. I have battled with depression because of the inability to be as active as I was. My GP tells me it get better as time goes by but that I will have some set backs on the road to recovery. Because of the severity of the blood clots I had, I was told I'm looking at 3-5 years of having complications but that I need to try and push my lungs to make them stronger.