What to Expect During Pulmonary Embolism Recovery
Radiologic studies of pulmonary embolismsClick thumbnail to view full-size
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 3 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 experiences 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.
Why is a pulmonary embolism so serious? See this video using household items.
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.
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
Medical lecture about PE treatment
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 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 toiletting with more independance 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.
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:
- Chest pain
- Fast heart rate
- Breathing difficulties
- 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 3 months. I was told that a year out from my hospitalization I should feel a lot better. It is looking 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.
Why did you have a clot?
What caused your clot? Did you have a clotting condition, thrombophilia, surgery, or other risk factor?
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!
How long did it take for you to feel fully recovered?
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 start point for my oddyssey 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 1 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.