Tips, Recommendations, and Recovery Information for Pulmonary Embolism Survivors
Recovering from Pulmonary Embolism
Recovering from a pulmonary embolism can be a very long process. Blood clots in the lungs can cause extensive damage to both the lungs and the heart. If an embolism survivor had a deep vein thrombosis (DVT), he or she will also have damage to the veins in the arm or leg that was affected. This can cause significant pain and swelling during pulmonary embolism recovery and beyond. All of this damage doesn't even take into account the physical deconditioning that occurs from extended periods of inactivity and possible bed rest. It also doesn't take into account the mental strain that happens when one suffers and survivors a major medical crisis. Pulmonary embolism survivors have a lot of healing to do and very little information about how to go about healing once they return home from the hospital and begin recovery.
All of the information in this article is from my own experience. I am not a doctor, I am a PE survivor. Take this information to your doctor and discuss it. This way, you will know that you are doing what is safe and healthy for you. Please check out my other articles. I have written about pulmonary embolism, blood clots, and blood thinners.
If you need additional information about PE recovery, please see my article What to Expect During Pulmonary Embolism Recovery where I detail my recovery experiences and timeline.
What You'll Learn from This Article
Coping with Pulmonary Embolism Recovery Challenges
• Medications and anti-coagulation
• Dealing with symptoms and side-effects
• Recovery symptoms versus new problems
• Mental health and coping strategies
• Recovering stamina and endurance
• Returning to work
• Sex and birth control
What Is a Pulmonary Embolism?
A pulmonary embolism is a blood clot that is in the lungs. It prevents blood from being able to reach the oxygen filled areas of the lungs. Pulmonary embolisms often come from the large veins in the legs and travel through the veins until they reach the lungs and become trapped. As oxygen is vital to the body, blood clots in the lungs are potentially fatal.
After a pulmonary embolism, patients are sent home from the hospital with very little in the way of instructions. Most of the instructions that are given will focus on medications such as Lovenox or Coumadin. Very little time is spent telling the patient how to cope with a healing body, deal with pain, or re-develop lost muscle mass, endurance, or lung capacity. Lack of information is only one of the problems that is faced by these patients.
Pulmonary embolism survivors have a few things that they will need to accomplish as part of recovery:
- Become stable enough to leave the hospital safely.
- Reach adequate levels of anticoagulation.
- Develop an in depth level of understanding about their medications and how to use them.
- Be able to identify what is a medical emergency and what is simply ongoing symptoms.
- Learn what their bodies' limitations are and how to stick within them.
- Learn how to regain lung health.
- Learn how to regain endurance.
Items 1-2 on the list are generally addressed while in the hospital. Item 3 is worked on a bit in the hospital but often leaves a patient with ongoing questions. Items 4-7 are very confusing and require greater patient education. This article is going to focus on items 4-7 and will also include some information about item 3, medication management.
Medication and Anti-Coagulation
One of the first things that is done when a pulmonary embolism is found is placing the patient on some type of anticoagulant. While in the hospital, this is managed for the patient. Once the patient is home, many questions will begin to show up.
Lovenox is commonly used when a patient is just beginning to take warfarin, as a short term treatment around surgery, for long haul flights, in pregnancy, and if the patient is unable to take warfarin. The largest challenge that patients have with Lovenox is that it hurts! Lovenox is an injection that the patient self administers twice a day twelve hours apart. Lovenox stings and can cause bruising. Ice packs can really help with both of these problems. Also, check out this site with additional ideas about Lovenox injections: Patient to Patient Lovenox Shot Tips.
Comadin, or its generic, warfarin, are typically used for the long term prevention of blood clots as well as for the healing process after having a pulmonary embolism. This medication typically raises a lot more patient questions. Warfarin is a very particular drug. It blocks the effects of vitamin K in the body and by doing that, it slows the time it takes for blood to clot. The dose varies person to person, by diet, and by other medications or supplements that are being taken. For this reason, levels are warfarin are carefully monitored by watching something called INR. INR will determine how much warfarin is needed. If the INR is too high the dose will be lowered. If INR is too low, the dose will be raised.
Problems with warfarin typically stem from difficulties maintaining the correct INR. If a patient is having problems with INR, he or she should try some of the steps that can be found on my page about warfarin.
Other problems with warfarin stem from problematic side effects. There are a number of documented side effects. Talking to patients who are on warfarin reveals that there are a number of people who report having other, unlisted side effects. Some of these effects include a fast heart rate, feeling jittery, loss of appetite, and a general unwell feeling. If a patient is feeling unwell or experiences possible side effects, he or she should talk to a doctor. Although the FDA states that generics and name brand medications are the same, some people feel that they feel better when on name brand version, Coumadin. It is worth exploring this option with your doctor.
If you are feeling unwell or are having problems with your anticoagulation therapy, explore options with your doctor. Name brand Coumadin, dosage changes, and Lovenox are all options that may help you to feel better. While many side effects are not officially listed, each person's body chemistry is different. You and your doctor may be able to fix your symptoms with a medication change.
Also, if you are having problems with your INR, review any life changes that you have experienced. Even topical medication can effect your INR. A great example of this is over the counter yeast infection creams.
Living With Coumadin
Dealing with Symptoms and Side-Effects
One of the most frustrating things about pulmonary embolism recovery is dealing with symptoms, especially new or changing ones. The best thing that a patient can do is to establish a strong team of doctors. Unless the clot was caused by a known factor (surgery, already diagnosed with thrombophilia, sickle cell anemia...), then the patient should strongly consider asking for referrals to a hematologist (blood doctor) and possibly a pulmonologist (lung doctor). These two specialists can answer a variety of questions.
Ask doctors questions. If you don't feel that you are being valued and answered with consideration, ask another doctor. Patients need to know what symptoms are expected, common to healing, side effects of medication, or an emergency situation. A general practitioner or nurse line may be able to help to interpret test results.
Get copies of your records and carry them to doctor visits. After clots, patients tend to see a number of doctors. In the United States, HIPPA requires medical files to be accessible. There may be a fee for getting the records and it may take some time so make sure that you plan ahead. Records can be sent directly from doctor to doctor or a patient can get a copy of the records and carry them to visits. Make sure that you records include any medical imaging that may have been done as well as any blood work.
Go to the emergency room. This is especially true in the beginning when a patient has yet to establish what is the new "normal". It is always better to be in the hospital than to be dead. Remember, blood clots are very dangerous and life threatening.
Recovery Symptoms Versus New Problems
One of the most difficult parts of pulmonary embolism recovery is knowing what is a new problem versus what is expected during recovery. Every patient is different. The key here is, if a symptom has gotten worse or if you have a new symptom call your doctor. If you experience new problems or worse problems with breathing, pain, or other issues that could signal a new clot or other life threatening condition go to the emergency room. Do not rely on the Internet or your friends for a diagnosis. The emergency room is safe. They have the tools to diagnose new clots. They also have life support systems. Keep in mind that blood clots in your lungs can kill you. Being overly cautious, especially as a new survivor, is important as it may save your life. You are less likely to get clots on anticoagulation but it is not impossible.
Mental Health and Coping Strategies
Mental health is rarely spoken of when discussing recovery. It is one of the most important topics to think about. Anxiety and depression are very common in pulmonary embolism survivors. Recovering from a pulmonary embolism means working through a number of emotional challenges. Patients often experience:
- Stress due to trying to survive and support themselves after and during a massive health crisis.
- Survivors' guilt: Surviving a life threatening health diagnosis often makes one question life.
- Post traumatic stress syndrome: Patients who were very close to death may panic with new symptoms as their bodies are on heightened alert.
- Anxiety about healing, having subsequent clots, and getting back to "normal".
- Depression due to loss of health and function.
- Panic attacks: There can cause shortness of breath and symptoms similar to a pulmonary embolism. The stress from the PE can trigger these attacks.
Counseling can be a very important part of healing. Talking over one's fears and learning relaxation strategies is often a huge help to a pulmonary embolism survivor. Emotional problems are normal and are to be expected. Look into work insurance plans or IEP programs for counselors. If mental health needs are not covered, many colleges with counseling degrees offer low cost student training clinics.
Some patients find that pulmonary embolism recovery is easier when treated with anti-anxiety or anti-depressant medications. Ask the primary care physician if he or she feels that a pharmaceutical approach may help.
Breathing and Relaxing
Yoga and meditation can be great tools for pulmonary embolism recovery. Both of these tools may be able to help out with stress relief and breathing. Meditation is great because it can be done at home for free. I recommend downloading some guided meditation that focuses on breathing excercises. Two of my favorite sources for free guided meditation are:
- The Meditation Podcast can be found on iTunes or at their website.
- The Meditation Oasis can be found on iTunes or at their website.
Both of these resources are free podcasts. Each one has numerous different meditations including breathing exercises. They can be listened to on an iPod, iPad, iPhone, mP3 player, or computer.
Meditation and breathing tools can also be found in either an Android or Apple app store. There are a number of apps that will monitor breathing and give coaching to help the user pace breathing to a slower, deeper pace. There are also meditation apps available.
Yoga is another source of breathing exercises. Some of the slower paced yoga forms can also help a patient to increase physical endurance and strength while he or she is recovering from a pulmonary embolism. Yoga classes lead by a teacher seem to be the best way to do yoga. This way, a teacher can assist and correct a student. Also, yoga teachers are able to recommend accommodations if a student is unable to participate with the standard yoga poses.
Speech therapists often specialize in breathing exercises. Ask your doctor for a possible referral.
Recovering Stamina and Endurance
Due to the bed rest, possible heart damage, and lung damage patients often loose a lot of endurance. Fatigue and muscle loss are common complaints of pulmonary embolism survivors. Once a doctor has cleared exercise it is time to figure out how to get back to where the patient was before the clots. Many patients expect to jump right back in to where they were prior to the clots. This rarely works out as planned.
Gentle aerobic exercise is often supported by doctors. This may include things like yoga (see above), walking, or swimming.
- First, clear whatever form of exercise you choose with your doctor(s).
- Get a log book to track your progress (time out, heart rate).
- Keep in mind that housework and shopping are physical activities. Working everyday tasks slowly back into the mix can really help. In the beginning just walk to and from the car and wait while someone else shops, then move up to walking in the store a bit and then sitting. Your walks will get longer as time passes.
- Get a heart rate monitor watch and a pedometer to help you pace yourself, stay in a safe exercise range, and chart your progress.
- Give yourself patience, patience, and more patience. After a year, you will be amazed how far you have gone.
Some areas have rehabilitation based sports facilities available. These places are staffed with medical personal as well as trainers. If a person is severely impacted with significant heart and lung damage, medical sports rehabilitation may be for you. Ask you doctor if there are any medically oriented gym facilities in your area.
When you return to work, consider a lighter work schedule or staggered re-entry. You can taper your hours 4, 6, 8 hour days or make other arrangements. FMLA leave will cover partial days if you are in the United States, are eligible for FMLA, and have not exhausted your leave time.
Returning to Work
Among the most common questions that come up during pulmonary embolism recovery are, "when and how will I return to work?" These are very important questions. It is important to start thinking about them early in recovery. Returning to work is a great motivator. When one is looking at mental health, breathing, and endurance, having an end goal in mind will really help. Also, patients may need to consider how they are using their leave time from work. Whether paid or unpaid, most work places have limitations on leave. FMLA only guarantees twelve weeks of leave, after that time is up, work places may fire an employee. Planning to have enough time to ease back into work and continue to make doctor appointments will really ease stress in the long run.
A full work day is a lot different from a day in the hospital or even a day at home. A full work day means no time for rest or naps. It may also mean having to maintain the home and work on the same day. If work is a physical job, the need for endurance is even larger. How can patients prepare for these changes?
The best way to prepare for work is to work on all of the areas that are mentioned above. Another thing that is important is becoming informed about leave policies at work. Once the time to return to work approaches, the pulmonary embolism patient can approach his or her doctor about the best way to ease back in.
Whether work is highly physical or not, it is often a good idea to start back to work on a part time basis. For many people who are recovering from pulmonary embolism, four hours at work will be a long time for the first few days. Talk to your doctor about how many hours would be a good starting place. You may want to do a week at 4 hours, then one at 6 hours, then 8 hours, then typical days. FMLA will cover part days if you have any time remaining. If you are in a highly physical job, you may want to inquire about being placed on light duty for a while. Read your work place's policies, review FMLA, and speak with your doctor about what will be best for you.
Another consideration is asking for help. It sounds like such a little thing. A friend or family member may be able to help you cook, clean, or do laundry while you are just starting back. This will give you more time for naps when you get home from work.
Returning to Work
When did you return to work after your pulmonary embolism?
Sex and Birth Control
Sex is often nerve-wracking during pulmonary embolism recovery. Don't be afraid to consult your doctor. Patients will want to ask a doctor when sex is safe again. Once it is safe, survivors need to be patient with their own bodies. Endurance is often an issue in this area as it was in other life areas. Planning sex for a time when the patient has the energy to participate will help out a lot. Also, couples may want to modify their activities so that the pulmonary embolism survivor has the least amount of strain possible.
Once women are healthy enough for sex, new problems often arise. Women are often very concerned about pregnancy at this time. Warfarin is not safe for a pregnant woman. The woman may not be healthy enough to feel safe carrying a baby to term. Also, pregnancy increases the risk of clotting. Doctors may not feel safe with pregnancy unless the pulmonary clots have dissolved. For these reasons, birth control is often very important. It is also a challenge. Oral contraceptives are often out of the picture due to the fact that hormones increase the risk of clots. Combine oral contraceptives with both estrogen and progesterone are very risky. Doctors typically will not prescribe them to someone who has clotting problems. Here is a list of possible birth control methods and their clotting risk:
- Copper IUD
- Lea's Shield
- Cervical Cap
- Fertility Tracking
These methods have a lower risk than standard oral contraceptive pills that contain estrogen. Talk with your doctor about your personal risk.
- Progesterone only mini pills
- Depo Provera shot
More Information On Pulmonary Embolism Recovery
- The Clot Spot
The Clot Spot is a non-medical, patient-run, advocacy website that is dedicated to providing pulmonary embolism survivors, their friends, and their families with information about pulmonary embolism recovery.
If you have any other personal tips for recovery, please leave them in the comments section. Much of what is presented on this page is from my own experience.