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My Recovery Process After Having a Pulmonary Embolism

Lensa Welch has been writing on HubPages for over nine years. Her articles typically focus on the medical sciences.

Recovering From a Pulmonary Embolism (PE)

This 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 on sufferers and survivors of major medical crises. 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.

If you would like to learn more about my experience, I have detailed my recovery process after a pulmonary embolism.

What You'll Learn In This Article

  1. Recovery challenges.
  2. Medications and anticoagulants.
  3. How to deal with the symptoms and side effects.
  4. Symptoms of recovery versus new problems.
  5. How to take care of your mental health.
  6. How to recover your stamina and endurance.
  7. Returning to work.
  8. Considerations for sex and birth control.

What Is 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. The clots often come from the large veins in the legs and travel to the lungs where they become trapped. As oxygen is vital to the body, blood clots in the lungs are potentially fatal.

A histological image of the lung. Notice the clots (magenta dots) blocking the pulmonary arteries (central and bottom-left structures).

A histological image of the lung. Notice the clots (magenta dots) blocking the pulmonary arteries (central and bottom-left structures).

Recovery Callenges

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. Very little time is spent telling the patient how to cope with a healing body, deal with pain, redevelop lost muscle mass, and regain endurance and lung capacity. Lack of information is only one of the problems that patients face.

Patients have a few things that they will need to accomplish as part of recovery:

  1. Become stable enough to leave the hospital safely.
  2. Reach adequate levels of anticoagulation.
  3. Develop an in-depth level of understanding about their medications and how to use them.
  4. Be able to identify what is a medical emergency and what is simply ongoing symptoms.
  5. Learn what their bodies' limitations are and how to stick with them.
  6. Learn how to regain lung health.
  7. 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, patients are left 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.

Medications and Anticoagulants

One of the first things done when a pulmonary embolism is found is prescribing the patient on some type of anticoagulant, such as Lovenox and Coumadin (warfarin). 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 starting to take warfarin or cannot take warfarin, as a short-term treatment around surgery, for long-haul flights, and during pregnancy. The largest challenge that patients have with Lovenox is that it hurts! Lovenox is a self-administered injection required every 12 hours. It stings and can cause bruising. Ice packs can really help with both of these problems.

Coumadin, generic name, warfarin, is typically used for the long-term prevention of blood clots as well as recovery. This medication typically raises a lot more questions. Warfarin is a very particular drug. It blocks the effects of vitamin K in the body, and, by doing that, it increases 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 of warfarin are carefully monitored by watching something called INR (international normalized ratio. 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 often stem from the side effects, of which there are a few. In addition, talking to patients on warfarin reveals that many report having other, unlisted side effects. Some of these effects include a rapid heart rate, feeling jittery, loss of appetite, and malaise. 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 better about taking a name brand version, Coumadin. It is worth exploring all options with your doctor.

Name brand Coumadin, dosage changes, and Lovenox are all options that may help you 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.

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Read More From Youmemindbody

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.

Dealing With the Symptoms and Side Effects

One of the most frustrating things about pulmonary embolism recovery is dealing with the symptoms, especially new or changing ones. The best thing that a patient can do is establish a strong team of doctors to treat PE. Unless the clot was caused by a known factor (surgery, already diagnosed with thrombophilia, sickle cell anemia, etc.), 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 and common with recovery, side effects of medication, and what an emergency situation looks like. A general practitioner or nurse line may be able to help you 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 your 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.

Symptoms of Recover Versus New Problems

One of the most difficult parts of 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 anticoagulants, but it is not impossible.

Taking Care of Your Mental Health

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 from trying to survive and support themselves during and after a major 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 about your fears and learning relaxation strategies can often be a huge help. 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 programs offer low-cost student training clinics.

Some patients find that pulmonary embolism recovery is easier when treated with anti-anxiety or antidepressant medications. Ask the primary care physician if he or she feels that a pharmaceutical approach is appropriate.

Breathing and Relaxing

Yoga and meditation can be great tools reducing stress and rebuilding lung health. Meditation is great because it can be done at home for free. I recommend downloading some guided meditation that focuses on breathing exercises. Two of my favorite sources of free guided meditation are:

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 provide coaching to help the user pace their 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 increase physical endurance and strength. 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 in the standard yoga poses.

Speech therapists often specialize in breathing exercises. Ask your doctor for a possible referral.

Recovering Your Stamina and Endurance

Due to the bed rest, possible heart damage, and lung damage, patients often lose a lot of endurance. Fatigue and muscle loss are common complaints. Once a doctor has cleared you for 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 into 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, 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 by how far you have gone.

Some areas have rehabilitation-centered sports facilities available. These places are staffed with medical personnel as well as trainers. If a person is severely impacted by significant heart and lung damage, medical sports rehabilitation may be for you. Ask your doctor if there are any rehabilitation 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 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 you are 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 workplaces have limitations on leave. FMLA only guarantees 12 weeks of leave, after which time, companies may fire an employee. Planning to have enough time to ease back into work and continue to make doctor appointments will really reduce 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 your work is physical, the need for endurance is even larger. How can you 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 being informed about your company's leave policies. Once the time to return approaches, you can approach your doctor about the best way to ease back in.

Whether work is highly physical or not, it is often a good idea to start on a part-time basis. For many people who are recovering from a pulmonary embolism, four hours at work will be a long time for the first few days. Talk to your doctor about how many hours to start with. You may want to do a week at 4 hours/day, then one at 6 hours/day, then move on to full 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 company'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 rest when you get home from work.

pulmonary-embolism-recovery-tips

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 is 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 patient 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 carry 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 fluctuating hormones increase the risk of clots. 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:

This is not a comprehensive list. Always consult with your doctor to determine the safest option for you.

No RiskLow Risk

Copper IUD

Progesterone only

Condom

Mirena

Lea's Shield

Depo Provera Shots

Cervical Cap

 

Fertility Tracking

 

Sponge

 

Spermicide

 

Conclusion

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.

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.

Dislcaimer

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.

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

Sharon on June 24, 2019:

Hi , I started with breathlessnes ,i thought i was having a panic attack went yo my doctors anmy oxygen levels were low.so i was sent to hospital. Had all the tests an was diagnosed with bilateral pulmanary embolisims an right ventrical strain in my heart. Was put on clot buster drug an blood thinners apixiban .i hav to b on these for the rest of my life.I have found my self crying at times as its the realisation of i could hav died i think there shud b more support around mental and recovery.

Petula Hales on March 17, 2019:

I have recently been diagnosed with multiple pulmonary embolism on the lungs. I have RRMS and apart from being down on oxygen 80% had no noticeable symptoms. Woke after a very long sleep feeling like I was having some sort of seizure.

After spending 5 days in hospital was sent home on Riveroxobane. Now waiting to see my Neurologist next week. All very scary stuff.

Caroleseltzer1@aol.com on October 22, 2017:

Hi guys! I am about 6 weeks post DVT in my arm from Rotator cuff surgery. I have 9 large blood clots in both lungs. I have. Cardiology apt. Next week to see if my heart has been affected. My Pulmonologist says he'll be checking me in 3 months for pulmonary hhypertension. I was told Nothing about this recovery. I can now walk my dog 2 miles but am short of breath the whole time. I take Eloquis 2x a day and Advair inhaler 2x a day. I need to nap daily. Sometimes 2 hours! The mental stuff is almost harder to deal with than the physical. My DR 's can't tell me how long I'll be off work, or if I'll ever breathe normally again. I am an Occupational Therapist, I have treated people with this condition. But I too wasctaught very little. I thank God I found you guys to talk to. Ill pist more if i learn new recovery tips. Hang in there!

Ellcomfort on March 30, 2017:

December 2016 submassive bilateral PE with resultant right sided heart failure (cor pulmonale). Some of the most helpful aids I got while in hospital were from physical therapy and occupational therapy. How to shower and wash your hair while physically exhausted. How to manage stairs. How to monitor breathing and respirations. How to push forward with exercise and increase endurance with all these new limitations. This was so helpful, as was my docs offer to order cardiac rehab, that I thought I would mention and encourage these options. Thanks for a great article. It seems that the problem of blood clotting is not widely discussed.

Santo on September 22, 2016:

Hi,

Thanks a ton for this wonderful informative article.

Is blood in sputum while coughing a symptom of PE?

Danman on August 28, 2016:

16 months after a massive PE I am still working my way through the anxiety of being so close to death. I ignored the symptoms for months through being uneducated and over 2 days of severe chest pain I laid down in my home to die. With blood sugars at coma levels I finally sought help. I had great care in Birminghams Good Hope Hospital sent home after 4 days on Rivaroxaban. This site would have been invaluable in preparing me for my recovery. The unexplained panic attacks, complete blockage of sinus tubes, thoughts of survivor guilt and lack of power, fatigue and fear of not achieving again, are only a few but the worse side effects of my PE recovery for me. 40 years of age is shocking to suffer this then I read Ely L's statement, make contact as in recovery we can all support one another through this. I have managed to stagger my return to work which has helped. I have returned to playing a brass instrument which I am told will help retrain my lung capacity i am lucky to live on the South Coast of England and walk 2 miles along the beach most days now I am starting to feel confident of some semblance of a life ahead of me. I am a survivor too

Ashley on July 11, 2016:

Hey thank you so much for this article! I am 21, diagnosed with 6 pulmonary embolisms and an infarcted lung (hopefully) due to birth control (hematologist visit has already been set up for me in September!). It is extremely scary to go through this, and recovering (I am 4 weeks out) has been a little tougher than I imagined. Aches in my side, still a little trouble breathing, having to miss class because walking so far or sitting for so long bothers my lung quite a bit- etc. I'm happy others understand what I am going through, I don't feel so alone through this journey, and this article gave me more peace of mind :) thank you!

Warren Greene on April 08, 2016:

Thanks for this!! I'm 45 from the UK and had multiple PEs in November. I was very fit beforehand and was cycling about 200 miles per week to a decent standard. Not one of the doctors have given me any guidance on getting back to normal (or a new normal) - just "be grateful to be alive". My cycling has diminished and I feel I have lost my "top gear" and that my lung capacity is diminished. I just want to know will I ever get back to "normal". Impossible I know

Thanks for the article - so much of the mental health bit struck a chord and I'm nearly in tears here at my desk!!!

Sophie-Lettice on March 23, 2016:

Hiya, I'm 19 years old and have multiple extensive blood clots in my lungs and one larger one saddling my heart! All down to getting a DVT in my leg from a broken ankle :-(

I'm really struggling with the fact I very nearly died, I'm scared of everything my body feels and mentally I'm struggling!

It's been two weeks...

How did you over come this?

Lena Welch (author) from USA on September 05, 2015:

This is an easy reply... YES!

Pamela on August 27, 2015:

Hi. Glad to read this. I had multiplePEs with infarct left lung and possibly possible heart attack at some point. This happened 9 days ago. The frustration with lack of 'go home information' and feeling as if I will never feel good again is extremely frustrating. Can anyone tell me if they have had 1 good day and then feel as if they have made no progress the next 2 days? Thank you in advance.

Sharon on August 19, 2015:

It is so beneficial being able to read other peoples experiences. I had a terrible chest pain about a month ago and thought it was indigestion. I rush around every day working with reception children sometimes till 6. I enjoyed Zumba and keep fit classes and always constantly on the go. I broke up for half term and had a lazy week and then noticed I had a cough and couldnt get a full breath. I wasnt even able to mow the lawn without stopping for breaks. I visited the doctor who gave me steriods for my asthma, after finishing these I found no difference so went back. A different GP did an ECG and siad she had a feeling I might have a PE and sent me straight down the hospital. They were excellent and after an

X-ray and CT scan said I had a blood clot on my right lung. I had an injection and sent home with Rivaroxaban. But like everyone else no advice on going back to work, exercise, housework etc. I had a short flight planned which I was advised to cancel. I am 52 years of age not overweight,never smoked, have not been on any flights for the last 5 years and so they had no idea where PE came from. I now feel anxious, weak and fragile prob. from lack of exercise now.

I hope more people write in as it helps to read other peoples experiences and gain advice from these.

Lena Welch (author) from USA on August 13, 2015:

Clots can cause symptoms even after they dissolve. I think it is the damage that they do to the lung tissue. I had anxiety as one of my symptoms leading into my hospitalization. I think the mood symptoms are your body trying to tell your brain something is wrong. If you are already active, you are lucky and healing very quickly. PEs do a number on the body. Listen to your body and do as much as you are able. It will get better.

Lena Welch (author) from USA on August 13, 2015:

Do you have a hematologist yet? If not, consider getting one. He or she can help you to review possible causes and plan the length of your anticoagulation therapy. I just did a blurb on testing at the Clot Spot blog. Google the name and you should find it. I had a lot of minor things that stacked up and may have caused mine. I was 30. Hang in there! Three weeks down.

Iris Walls on August 13, 2015:

Thanks for writing such useful info. I was diagnosed two weeks ago and came home on day 6. I was feeling unwell for some weeks beforehand....anxious feelings, tired and very low endurance. My doctor prescribed anti-depressants, since my brother had died a few months earlier. Then three weeks ago, I began palpitations and breathlessness. I thought I was having panic attacks. The hospital said my small PEs on each lung had been building up for some time, sooooooo, my question is, could these have been the cause of my "depression". I felt very shaky in the weeks beforehand (less oxygen to muscles)? Now that I am home I am more active than before hospital, but still feel shaky and somewhat lacking in confidence. Is this because of the fatigue caused by the trauma, or is it reasonable to assume that these little clots have not disappeared yet, and still causing oxygen problems? Many thanks!

Michelle on August 07, 2015:

What a pleasure to find so much info in one place, I had a PE 3 weeks ago out if the blue bang in the morning chest pains I had a large PE in one lung and a smaller one in the other with pulmonary infarction in one I have been put on Riveroxaban and that is it dat at home worrying about everything ! I am 38 with two children and really need to know why? I have rheumatoid arthritis but on no medication had been on a short flight the week before and was on oral combined pill which I think all contribute . I am so convinced I have an underlying problem cancer or something!

Denise Davis6241 on March 14, 2015:

This was a great article. I had a PE in June of 2013 and I was very lucky. The Dr told me I had a big clot in each lung and then a bunch of little ones in both. Basically my lungs were full of clots. I had never heard of a PE until then. I knew I was having trouble breathing and it continued to get worse. I couldn't walk ten steps without looking like I had just ran a marathon. I was admitted to the hospital and stayed for five days. I was discharged with no information on healing or what to expect. I did some research on my own but there just isn't a lot of info out there. This is very informative about healing and what to expect when you go home. Thanks for writing this article!

Rona on March 01, 2015:

Thank you for all the I formation on recovery from a PE I was released from hospital and told to take it easy for a couple of weeks A week after I got home realised how unwell I was had overdone it Its now 6 weeks still not great get very tired managing to walk for half an hr each day including hills still not back to housework or shopping Hoping each day I will feel stronger I am over 70 and its been a very bad shock to me as I have always been healthy the other problem I have had is anxiety and depression seeing some one and getting the help I need

sheila on December 14, 2014:

this has helped me so much i suffered masive clots in my lungs two months ago and have been back into hospital twice since i am so frustrated at being so tired and not able to do everything i did before with ease the hardest what i can and can't do safely the doctors say listen to your body but i need guidelines i have been blaming myself for being overweight so causing this myself but i had been seeing two GPS for more than eight weeks prior to this being diognosed yet they knew of my DVT history and a cronic cough i had suffered for three months but still did not pick this up finally i got myself to hospital and thank god i did just in time

Sofija Trajlovic on July 15, 2014:

I am a fellow PE survivor. It has been over 2 years for me and every day I am reminded of my mortality. I have scar tissue on the Pleura sac and so I am so limited to what I can do. I wake up with night terrors somethings with the sinking feeling of "omg I almost died" and I shake from it. I was misdiagnosed and sent home. I am a walking miracle. I belong to a few recovery sites that help and have sort of gone for counselling but losing my father last year and my mother is a 7 time PE survivor, it has a lot to weigh on my mind. Many Dr's where I live are just not taking it seriously!!!

Lena Welch (author) from USA on July 11, 2014:

You are welcome. I remember that time so well. Try to listen tour body and it will guide your personal restrictions. Pace yourself as much as possible and hang in there! Search for the PE group at Dailystrength as it was very helpful. Best wishes in recovery!

teresa on July 10, 2014:

three weeks and surviving. I am really afraid. The Doctor told me when I left the hospital that there were no limitations for this sort of thing. I am so tired. I fell I can't walk from my desk to the bed. I took a nap today and I thought it would be a short one, but it was for 5 hours and I am still tired. I went out this morning for two hours and I could not wait to get home. The fatigue is over welming. This information makes me feel better I thought that in a couple of months I would be dead. Thanks

Lizbeth on July 09, 2014:

Great information. My husband is on his 8th day at the hospital after a DVT & PE. He is having a difficult time dealing with all of this. He had a knee surgery prior to this diagnosis. He was very healthy & active doing crossfit & group fitness instructor before. I'm glad I found your article & was able to discuss key points with him. He has a long recovery from the PE, DVT and the knee surgery. I keep telling him that God is in control & he would guide us thru. I just so grateful that he still here with me and our 2 children age 15 & 8. God is good

Tracie on April 30, 2014:

Thanks for this information! I'm 7 weeks out from my PE "shower." Like Margaret, I wish I would have had this info when I was discharged. They gave me some information, but I almost wonder if they don't want patients going all hypochondriac on them so they don't tell us what really to expect. Fortunately I found a Coumadin Club on Facebook :) That helped sort things out, but having this information all in one place is really great.

I started back to work at a desk job 2 weeks ago andwas supposed to start full time hours this past Monday (this is Wednesday) but I had one of "those" intermittent awful days where I knew I would be worthless all day. I slept until noon and didn't feel very good until 6 p.m. UGH I worked an 8 hour day yesterday and woke up today feeling like I've been run over by a bus. Ugh again. I did go to work for the 2nd half of the day and feel so-so. I wasn't all that energetic before the PEs but this fatigue is unlike anything I've experienced for such a length of time.

The good news is the asymptomatic DVT that started all this commotion is gone, per an ultrasound last week. Doc is expecting to do genetic testing this summer as long as new clots don't show up. I will be glad when this is all over with because I am TERRIBLE with needles. If I would have stayed in the hospital another day I think I would have bludgeoned the next vampire to approach me. :)

So glad to find communities and pages like this. It's a scary thing to go through....but clearly God's not done with us yet cuz we're still here!

Margaret Mason on April 03, 2014:

Thank you for this good information. I wish I'd had it when I first got out of the hospital. I knew nothing about what had happened or what the recovery time would be. I also had a doctor who didn't bother to call me despite getting the hospital reports and it's taken 8 months to find a family doctor who was accepting patients. I'm slowly getting better and the online support group I joined has been great.

I have only one suggestion to make, and that is to help recover lung health, try singing. Sing a phrase - doesn't matter what kind of music - and the next time try to sing one more word before you breathe. It's an easy thing to do and can be done while you're sitting or lying down or peeling potatoes! :)

Lena Welch (author) from USA on February 07, 2014:

Hello! I will tell you that questioning the filters is a very good idea. Much research is showing that as the filters can have side effects and there isn't strong evidence in their favor that they should be reserved for people who can't take anticoagulants. I wouldn't worry about the clots dissolving. They may dissolve, or they may not. One doctor told my mom when I had my clots that the worst had already happened, they moved to my lungs. Now we just had to get me feeling better.

Lena Welch (author) from USA on January 29, 2014:

Interesting that you are FVL and a lifer. I am FVL and off of anticoagulation after 1 year of being on it. We are all different though and a lot of clinical thinking has to go into who is on for life and who isn't. Likely my background is different than yours.

Lena Welch (author) from USA on January 29, 2014:

Generally we don't find out when the clots dissolve. Survivors just go on with life as in many ways it doesn't matter. The clots made it to the lungs and that is the worst case scenario. It doesn't get worse than that as a doc told my mom when I was in the hospital. I found out that mine dissolved because I had 2 instances of severe shortness of breathe post clot that send me to the ER. The CT showed no new or old clots. In some people scar tissue will form and the clot is never "gone". The clots to be worried about are any clots lingering in the legs - if there ever were any. Your mom may find a cause after she is off of anticoagulation. They can do full blood tests to see what they can learn. Before then the blood chemistry is messed up from both the clots and the medication. You are VERY right to question the IVC filter (http://bloodjournal.hematologylibrary.org/content/... It is mainly used in patients in which anticoagulation doesn't work or can't be used. I highly recommend going to clot connect (google it) and reading the patient and medical professional blogs. It is an amazing site and will answer many questions for you.

Fifi on January 28, 2014:

Hiya Everyone,

I am 23 and from Liverpool UK, I was diagnosed with pulmonary embolism in my left lung and pneumonia in Nov 2013. Spent a month in hospital with all kinds of drips and antibiotics pumped into me. They found I have Factor 5 leiden and I am now on warfarin for life. My lung is now severely scarred.

Since being in hospital they have found that I have a heart aneurysm and a heart defect which they want to investigate further.

I am a survivor :)

MissMc on January 28, 2014:

First let me say thank you for this information. It is helping to calm my nerves a bit. My mom has just survived a PE. They say she has a large clot in both lungs as well as lots of smaller ones. They can not seem to find what is causing them. I guess this is not as uncommon as I thought?? She was in the hospital for a week and just discharged 3 days ago. I have been very nervous about this since the clots are obviously still there. She is on warfarin and has visiting nurses coming to the house to monitor INR. She is very fatigued and gets short of breath. I have been worried about this, but I guess it's a normal part of the recovery process. Family and friends have been contacting me to have her see a different doctor as they don't think she is receiving proper treatment. They feel she should still be in the hospital since the clots are still present. After reading this hub it seems like she is receiving the typical course of treatment. My biggest question at this point is how do we know when/if the clots have dissolved? I also question a need for a filter since she has numerous clots. I'm hoping to attend her next appt with her so I can ask these questions.

MMc on January 27, 2014:

First let me say thank you for this information. It is helping to calm my nerves a bit. My mom has just survived a PE. They say she has a large clot in both lungs as well as lots of smaller ones. They can not seem to find what is causing them. I guess this is not as uncommon as I thought?? She was in the hospital for a week and just discharged 2 days ago. I have been very nervous about this since the clots are obviously still there. She is on warfarin and has visiting nurses coming to the house to monitor INR. She is very fatigued and gets short of breath. I have been worried about this, but I guess it's a normal part of the recovery process. Family and friends have been contacting me to have her see a different doctor as they don't think she is receiving proper treatment. They feel she should still be in the hospital since the clots are still present. After reading this hub it seems like she is receiving the typical course of treatment. My biggest question at this point is how do we know when/if the clots have dissolved? I also question a need for a filter since she has numerous clots. I'm hoping to attend her next appt with her so I can ask these questions.

Lena Welch (author) from USA on January 12, 2014:

It is possible that you have a lot of scar tissue in there. I am lucky and am left only with SOB from my vocal cord dysfunction that got much worse after my PE. Stress can trigger developing VCD so I suspect that was the final straw. Anything that makes you work your lungs will likely help some. The leg pain - I was lucky and avoided that. No clue where my clots came from.

Glenda on January 12, 2014:

Great sight. Wish I had found it earlier. Recovery and coping is such along process. I also m going to try Pilates. I can function really well but still panic over walking distances and deadlines. Sob lingers and leg pain is still present occasionally. 85 percent of right lung blocked and occurred in 2002. Coumadin for life and filter in inferior vena cava to prevent further pe. Have I not pushed enough? Don't know but when increased exercise causes jaw pain or coughing I stop and then am wiped out for a while however still improving slowly. Any upper respiratory/sinus thing definitely makes it worse.

Lena Welch (author) from USA on January 08, 2014:

23 and a Survivor is a beautiful thing!

Ely L on January 05, 2014:

I'm 23yrs old and I was recently diagnosed with pulmonary embolism. I live in a 2nd story apartment and whenever I would go up the stairs I'd be out of breath but I just thought I was chubby and needed to hit the gym, but the next day my chest and back was hurting and I thought well maybe it was the flu. The following day I couldn't stand the pain so my mom took me to the hospital, right away I had a ct scan and sure enough they found a blood clot between my heart and lung and another one inside my right lung. Doc said if I would have waited one more day it would have been fatal. I couldn't stop crying I was so scared. They said it was due to my birth control. I was hospitalized for 10 days and it was the most horrible 10 days of my life. I was released dec 24, 2013, in time for xmas but I spent it alone in bed. I was so scared to be out of the hospital I thought I would have another blood clot go to my heart or head and die. The doc kept assuring me that the blood thinners would keep that from happening. But I was also scared because my heart rate still doesn't go down and its now jan 5. Sometimes it goes up to 160! And no one told me how to take care of myself once I was out of the hospital they just gave me a bunch of medications and said be on your way! So THANK YOU for writing this article it is so helpful! For the first time I actually feel like I can breath! I now know I'm not the only one going through this...it sucks that I'm only 23 and this had to happen to me, but I know I will be okay because I amA SURVIVOR.

Lena Welch (author) from USA on December 07, 2013:

Best wishes! I am glad that it helped out!

Sue R on December 06, 2013:

Thank you so much for your swift, comprehensive, informed, and very reassuring response, it's very much appreciated. I'm going to follow your advice, and will of course keep on reading this fantastic forum. X

Lena Welch (author) from USA on November 28, 2013:

I only had my lungs re-assessed due to possible re-clots. If I hadn't had to go to the ER for shortness of breath, I wouldn't have had more CT scans. The CT scans are not that necessary and they have a lot of risks due to the dye and the radiation. I was told that my aches in my legs were due to decreased activity levels. It would be worth asking someone if this is the case. If a doctor would clear a massage, one may help your pain issues. Due to the fact massages can loosen clots, you will need to ask a doc if it is safe. Also, maybe a medication change can help your pain issues. If the new anticoagulants get rid of the pain, you have your answer. Again, worth asking a doctor on that one. Yoga, swimming, walking, and deep breathing all can help you gradually regain muscle and endurance that are often lost in a PE. They may also help the pain. Again…. clear it with your doctor. I am glad that the cardiologist saw you and you are cleared! That is wonderful news.

Sue R on November 25, 2013:

Dipped in and out of your really helpful site since I collapsed with saddle PE 8 months ago, out of the blue and cause not identified. Briefly; discharged from cardiologist but have never had lungs assessed, should I? Will be on warfarin for life so I get regular INR tests, but see nobody else routinely except to pick up a prescription. As well as many of the symptoms mentioned in your blog I have lots of aches and pains that I didn't have prior to PE, especially in my neck and shoulders (and legs at night when in bed) is this common? Would be very grateful to hear from you, wish I could rely on medical personnel for so much knowledge and guidance, thank you!

wayne on November 25, 2013:

Great form, l am 5 weeks out of bi-lateral PE, it is still a scary experience, having to dip deep for full breaths, extreme leg pain, reading your story and other peoples experinces has calmed my nerves knowing l am on the right track, Thank You

RC on November 18, 2013:

The greatest value in your informative hub is simply knowing everything I am experiencing is normal. The anxiety attacks are by far the worst. I'm five weeks out from a DVT/moderate PE diagnosis and can handle most of the symptoms and really haven't experienced any pain other than lung pain while sleeping. But I've had two anxiety attacks that have floored me--they come out of NOWHERE, when I'm not even thinking about my condition. Fortunately I have Xanax which works quickly and does wonders--don't be afraid to ask your MD for Xanax if anxiety attacks are a problem. It doesn't put you to sleep, etc., yet is effective. Thanks again.

Jim h on November 18, 2013:

I'm only 10 days in to this and found the site very informative. Thank you....good to be in the company of other survivors.

Luis on October 15, 2013:

I had an pulmonary embolism 12 months ago it occurred in October in 2012 I was in hospital for a week in December the same year I started walking and running after six months a started light weight training which I had done prior to the embolism and to this day I am still active at the gym I sometimes feel tired after doing leg training but otherwise I am fine but it still at the back of one's mind, but otherwise no problem.

Thanks for the comments I have read so far.

Lena Welch (author) from USA on August 25, 2013:

You are welcome! Feel free to stop by the Clot Spot to see what else is available. If you need anything, let me know.

Jacob Jackson from Kansas on August 24, 2013:

wow an excellent guide thank you!

Lena Welch (author) from USA on August 07, 2013:

You're welcome! If you have questions, let me know. I will be out of town this week so the easiest way to find me will me through the Clot Spot Facebook page. If you send me a message there I think that my Facebook app will let me know.

Joslyn on August 06, 2013:

First day home from the hospital after being diagnosed with 2 small PE's, one in each lung. So glad I found your page! In the hospital they had me on Lovenox and Coumadin, but then switched me to Xeralto and sent me home. My leg scan was clear, so they don't think the clots came from there. At this point they are saying it was caused by birth control, although other things still need to be ruled out. I'm still having pain off and on, sometimes pretty severe. I was told this is normal and to expect it until the clots begin going away. I'm anxious and find I'm unconsciously tensing my back and neck muscles which increases my pain. I felt weird going home so soon after something so serious. I'm very tired too. Your page has been helpful because the recovery portion of this was not explained to me at the hospital. Thank you!

Lena Welch (author) from USA on June 04, 2013:

Kathy, I am so happy that things are looking up. I can tell you that you and your body are both survivors. Stairs can be hard without a PE - just look at a gym! I am glad that you have a hematologist. If you need anything, let me know.

Kathy on June 04, 2013:

Now my 9th day home, stairs still a huge problem...but progressing. Your blog has been so amazing for me. I'm one of those, never been sick, never taken a pill for anything and am the one considered to be stronger than most and tough as nails. (Probably growing up in a navy family did that). This PE hit me hard. Your "homework" did the trick, plus I decided to stay away from stories my friends want to tell me when they know of those who were not as lucky....need positive stories from now on, and the ones on your blog let me know there are some. Thank you again, I have a hemotologist appointment next week which I guess tells me if I can stay on xeralto. God bless you and your informative and good words.

Lena Welch (author) from USA on May 30, 2013:

Xarelto has gotten great reviews. I need to update my anticoagulant article to include it. You may want to read this article on this drug: http://www.goodrx.com/blog/2013/01/04/move-over-wa...

As far as the clots moving... In the hospital I was told that the worst had happened, the clots were in my lungs. Now, I had none in my legs and you may. Ask your doctor about if leg ones move. The lungs filter out clots so that they don't reach our heart or brain. They stick there first. If your symptoms kick up, go to the ER; if not, know that the worst is likely over.

It sounds like you are really suffering and have a lot of fear. I suggest talking to your doctor about your fears, considering asking for anti-anxiety or anti-depression medication to help to lower these fears a little, and consider counseling. I did all three and they all were helpful.

There are some great Facebook survivor groups as well as a useful one on DailyStrength.com that you may want to explore.

I have an assignment for you. Every night before bed write down 3 good things from your day. Focus on those. I remember the day I could get a full breath. I ran down a parking lot. That made my top 3! I was nowhere near healed, but that was such a great feeling. This is really amazing when you consider that I hate running!

Kathy on May 30, 2013:

I just returned from the hospital 3 days ago, so the very early stages of recovery with little information. I am so fearful of wondering if I was given the right medication, did the pharmacy fill it correctly. I have never had panic attacks and now the slightest trouble breathing, or the slightly blurred vision, I feel the clots are moving. I was very lucky, and was told so in the hospital. I am on a new drug, xeralto...it's amazing and is supposed to be easier than coumedin. Have you heard of it? I am so glad to have found your site since the fear is still very present. I don't like to hear my friends say how good and healthy I look, I feel like its still not certain ill make it. Is this usual, how do I get confident about my future, thank you for listening

Karen from TN on May 26, 2013:

I really enjoyed your hub, it is very informative and you gave some great advice. I am currently going through this with my husband he has had DVT's at least 3 times and PE's 2x he is actually recuperating from his last bout with PE's 3 weeks ago. Keep up the great information.

Lena Welch (author) from USA on May 19, 2013:

Come to one of the PE groups on Facebook or hop over to dailystrength.com to their PE group. You are not alone.

Naomi on May 18, 2013:

A week ago today, I had a bad leg ache which I thought was just a Charley Horse. Tried to walk it out, didn't work so I took an Advil and went back to bed. Woke up the next morning and couldn't breath. Rushed to the ER and found out I had had a clot in my leg then it went to my lungs. I have many clots in all 5 lobes. I had seen the doctor 2 weeks prior and had a clean bill of health. I'm 54 and very distressed. I have been to the hospital 3 times because I have panic attacks all the time. I don't have time to be sick! I appreciate this group because it helps to know that I'm not the only one.

Lena Welch (author) from USA on May 13, 2013:

First off, don't be afraid of medication. Yes, it can all have side effects, even aspirin! Keep in mind that for someone with a food allergy, food is lethal. Our bodies all behave a little differently with what with give them. Next, the Mirena comment is interesting because so far no study has shown Mirena to increase the risk of a PE. That being said, is it possible and we just haven't seen the link yet? The answer is, of course. So was it your cause? Maybe. Did other things play into your clots. Most likely. You will find that almost all of us had multiple risk factors at the time of our clots.

You are right, the hospital is better than dead. If anxiety is the problem you will still need treatment. Counseling and medication can work wonders in helping a survivor cope with the meaning of life after a PE. I recommend it to all of us that are struggling with issues post PE.

It sounds like your fear is crippling. I am so sorry that you are finding it so hard to move on from your experience. Fatigue and chest pain can be panic as well as a PE. Don't take that as people writing you off, anxiety is very real and very debilitating for some people. You brain is an organ. Your lungs needed help when you were 26. You helped that organ out and helped it to recover. It may be time to help out another organ as it is struggling still from the clots.

Hopefully if you have some medical professions work on your brain a bit the healing from the PE will continue or start up again. Find a good team to help you with that issue. You will want a primary care doctor, possibly a psychiatrist who really knows anxiety/depression medication inside and out, and a good counselor. Ask the counselor (or psychologist) if her or she specializes in anxiety disorders. Also, you may want to ask about post traumatic stress disorder and if that is contributing to your problems with recovery.

PEs affect many parts of the body including the brain. I know, I was there. From time to time my brain still needs a tune up to deal with the post PE brain issues.

Hang in there!

DeeDee on May 12, 2013:

Thanks for the great article! I too am a survivor. I was 26 when diagnosed with my pe..after throwing a horrific fit at a hospital because they insisted I just had anxiety and was looking for drugs. I thought I was dying of a heart attack, I wasn't leaving without answers! Now I'm 28 and have had a clean bill of health for almost a year...until my sleep schedule got crazy due to a new puppy. My panic attacks began. I thought it was happening again. None of the doctors in this town have ever taken me or my pe seriously so back to the er I went. It is better to be at the hospital than dead. Now I'm on my way to therapy. Why couldn't I have been educated on what happens after the embolism? I'm infuriated that due to my age the doctors have written me off to being a hypochondriac even though they see where I was diagnosed, just because I don't have the pe anymore. My chest still hurts. I have no energy. I still have yet to return to work for fear I may get sick or not be able to perform the daily tasks (I'm a cosmetologist). I get short of breath constantly. I could go on but I won't. It's depressing.. all because of the mirena IUD. I have truly learned my lesson on taking medication, it always causes more problems than what you've begun with.

Lena Welch (author) from USA on May 03, 2013:

Thank God for clot busters. Most of us don't need them but when giv