Pulmonary Embolism Recovery: An Introduction

Pulmonary embolism recovery experiences vary greatly from patient to patient.  The experience depends largely on how long the patient had the blood clots before they were diagnosed and treated and how severe the pulmonary embolism or embolisms were.  For many patients recovery will take a number of months.  A few patients will be lucky enough to have a short recovery of a few days.  On the other end of the spectrum there are patients who will be in recovery for a number of years.  Because of the large variation in recovery times and experiences, little information is available to a pulmonary embolism survivor.

General Information About Recovery

Pulmonary embolisms are a very serious, life threatening medical condition.  Blood clots in the lungs often causes long term, sometimes permanent, damage to the heart and lungs.  Pulmonary embolisms can also cause the body to go without oxygen.  This can cause damage to all areas of the body.  On top of organ and tissue damage, pulmonary embolisms have a number of additional side effects.  They can cause general deconditioning and low endurance, mood problems such as anxiety or depression, and chest pain or discomfort.  Also, if a patient had a deep vein thrombosis, a common cause of pulmonary embolisms, that patient will likely have post thrombotic syndrome.  Post thrombotic syndrome can cause pain and swelling in the affected extremity.  Take all of these symptoms and side effects and now mix them up with taking care of a family, trying to work full time, and being concerned about day to day survival when one is deathly ill.  All of these challenges can make pulmonary embolism recovery a very difficult time.

• Recovery is a unique process that is different for every survivor.  Recovery times and experiences vary based on how much damage was done.
• Recovery has ups and downs.  Symptoms will come and go.  Talk to a doctor with new or reoccurring symptoms to make sure they aren't new clots, but do expect these symptoms to happen.
• Symptoms that led a patient to diagnosis will often continue in recovery.
• Treatment can cause side effects.  Talk to a pharmacist or doctor to see if a medication change may help.
• Pulmonary embolisms cause a lot of physical damage.  Recovery can be strenuous.  Extreme fatigue and challenges with the activities of daily living are normal.  This will get better as the months pass.  Talk to your doctor about ways to improve endurance.
• Keep your doctor informed and ask questions.  If you feel like you aren't getting answers consider a second opinion or a referral to a specialist.

Diagnosis And Immediate Care

Diagnosis is the first step in pulmonary embolism recovery.  Form many patients, this experience takes place in an emergency room.  An emergency department is often the only place that has the needed technology for pulmonary embolism diagnosis.  Many times patients will have seen a doctor on multiple visits trying to find a cause for vague symptoms with no apparent cause.  Other patients will find themselves in the emergency room after collapsing and being rushed to the hospital.  The severity of the clot and the length of time that the patient has had the clot before diagnosis will have an impact on the patient's recovery experiences.

AN INTERESTING NOTE ON HOSPITAL STAYS
It used to be the case that all people with a pulmonary embolism would go through an inpatient hospital stay.  This is not true.  Sometimes patients will be sent home after pulmonary embolism diagnosis.  According to studies done by both Aujesky et al. (2011) and Zondag et al. (2011), outpatient treatment is safe and effective for certain low risk individuals.  These patients are often sent home with prescriptions for low molecular weight heparin and warfarin and given instructions to follow up with his or her primary care physician.

Once the patient is in the hospital, he or she will need to be stabilized.  Once the medical team is sure that the patient is stable, testing can begin.  Routine tests may include a chest X-ray, EKG, spiral CT with contrast dye,  blood oxygen levels, and blood work.  Once the diagnosis of pulmonary embolism is given, the patient will typically be placed on either a heparin IV drip or low molecular weight heparin injections and oxygen.  The patient will also be placed on bed rest.  If the patient is unstable due to a large clot in the lungs, a special procedure may be done to apply clot busting medications directly to the clot by passing equipment up through a vein in the leg or arm.

The First Few Days After Diagnosis

A few days after diagnosis, warfarin therapy will begin.  Warfarin can cause clots when it is first started, so it is vital that the patient be on another anticoagulant when starting warfarin.  Typically heparin or low molecular weight heparin is used to prepare a patient's blood for warfarin.

During the first few days in the hospital, the day (and night) will be frequently interrupted to have blood work and vitals reviewed.  The results of the blood work will allow doctors to adjust your anticoagulant levels and will also help them know when it is safe for a patient to return home.  This time will also include any tests that were not done prior to hospital admission. 

WHAT DOES IT MEAN TO BE THERAPEUTIC?
People on warfarin frequently hear the term "therapeutic".  What does this mean?  Warfarin is a drug that can be helpful or harmful.  If there is not enough warfarin, it has no effect on the body.  If there is too much warfarin, the patient could have problems with bleeding.  Warfarin is complicated because unlike most drugs, the perfect dose is a very precise number.  It is unique to each patient and changes from day to day.  When a patient is therapeutic, the dose of warfarin is perfect for that patient.  It is just enough medication to prevent blood clots but not too much to cause bleeding problems.

An echocardiogram is often done to review heart function and determine if there is any heart damage from the blood clots.  Also, an ultrasound will likely be done on the legs to determine if there are any clots that may migrate into the lungs and cause a new pulmonary ebolism.   These tests will help to determine when the patient is safe enough to go off of bed rest.

After The Tests Come Back

Most patients will be kept on bed rest until tests indicate that no further clots will move into the lungs, the heart is healthy enough to move around, and vital signs are stable.  Once this point is reached, the patient can speak with the medical team about gaining some additional freedom.  Patients can ask about toileting, dressing, and walking around the hospital unit.  Doctors may vary the amount of activity based on the patient's health and the amount of damage that was done by the blood clots.  Movement can be a great way to begin to increase endurance.  It may also help to prevent the formation of additional clots.  Keep in mind that whatever activity is done, it often must be performed while hooked up to oxygen, and IV line, and an EKG.

Going Home

Going home can be both exciting and terrifying.  There are a lot of things that must be thought about before a patient heads home.  Many people do not realize the amount of damage that a pulmonary embolism does to the body.  Although it isn't visible, the body has had a lot of trauma.  Often, a pulmonary embolism survivor will find that he or she has very low endurance and is very fatigued.  Activities of daily living such as housework, eating, dressing, and bathing may be very difficult due to exhaustion or pain.  Depression or anxiety are also very common and may further impede daily activities.  Another consideration is that routine blood work will still need to be done once a patient returns home.  This testing is typically done at a anticoagulation clinic or at the patient's primary care physician's office.  These tests may be done several times a week for the first few weeks.  The patient needs to have a way to get to and from these medical appointments.  Lastly, the patient may need to have injections done at home.  Some patients are not able to do these independently and may need assistance.

In order to go home a patient must be able to meet the following goals:

• Warfarin levels must be therapeutic
• Tests must be done to check for heart damage
• No additional clots in other parts of the body that may break off and travel to the lungs
• Good blood oxygen numbers
• Stable vital signs
• No signs of internal bleeding
• Symptoms are improving rather than becoming worse
• The patient must be on both heparin (or low molecular weight heparin) and warfarin for at least 72 hours

Physical and mental health symptoms and side effects are very common after a pulmonary embolism.  Survivors should keep doctor and pharmacy numbers handy.  Changes in medications, switching warfarin brands, or adding a psychological medication can sometimes be helpful.  Counseling may also help the survivor deal with recovery stress.  If at any point the symptoms become severe or the patient suspects that there may be a new or worsening blood clot, he or she should call his or her doctor and then go to the emergency room immediately.

Recovery Expectations And Time

Pulmonary embolism survivors will have very different recovery experiences based on the amount of damage that was done by the clots.  Some patients have a small clot and were diagnosed immediately while others had multiple, large clots that were not diagnosed until the patient collapsed.  Survivors need to know that recovery is very individual.

The best advice for the recovery period is to have patience and to stay in communication with the medical team regarding symptoms and concerns.  Symptoms will often come and go throughout recovery.  If symptoms reappear or are bothersome, the primary care physician should be notified.  The patient may also wish to consider going to the emergency room to ensure that no new clots have appeared.

Recovery times vary greatly.  On HubPages, an informal study notes that while only 9% of patients will feel fully recovered in less than a month, 68% will feel recovered by two years.  Illness or stress during recovery can set back recovery by days to months depending on the severity of the situation.  A simple cold will hit someone in recovery much harder than a typical person.  Allergies or changes in the weather can also impact recovery.  Cold dry air or damp air seem to cause symptom flares in some individuals.

As mental health can be severely impacted by a pulmonary embolism, patients should speak with their primary care physician about any anxiety or depression problems.  Trying to participate in day to day activities can be very stressful for someone in recovery.  Also, many survivors are faced with the challenge of understanding why he or she survived a life threatening condition.  Panic attacks and post traumatic stress syndrome may also be a problem.  Counseling and or medication are reported by many survivors to be very helpful in the recovery period.