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
- Recovery challenges.
- Medications and anticoagulants.
- How to deal with the symptoms and side effects.
- Symptoms of recovery versus new problems.
- How to take care of your mental health.
- How to recover your stamina and endurance.
- Returning to work.
- 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.
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:
- 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 with 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, 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.
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:
- The Meditation Podcast can be found on iTunes or at their website.
- The Meditation Oasis can be found on iTunes or at their website.
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.
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:
|No Risk||Low Risk|
Depo Provera Shots
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.
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.
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:
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
Christina Martin on January 01, 2015:
I'm currently working with the NBCA (National Blood Clot Alliance) to promote the 1st annual Stop the Clot Chicago 5K
This cause is very near and dear to my heart as my best friend Manu Williams who I love dearly passed away from a blood clot on September 28, 2014. He was only 36 years young. My new goal is to promote the dangers of blood clots.
Please sign up if you live in Chicago or donate so that we can STOP THE CLOT!
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:
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 given in time they can save those of us who are too clogged up to make it otherwise. With the hole (I am guessing it si a PFO) you may wish to ask about the risk of clots jumping from one side of the heart to another. Most of us have the clots end at the lungs but with a hole I feel like I have heard that they can pass through and cause heart or brain damage. If you get an answer on that, let us know. I was tested for a PFO when I had my PE. I get migraines and that is correlated with PFOs. When I asked the doc about it they decided to do an echocardiogram that was internal instead of external as the internal ones have a better chance at seeing the hole.
Anyway... I digress. I am glad that you are here with us. Even with the main ordeal months in the past, I hope you can still find us useful. You can also find other material that I have on clotting at the Clot Spot. It is on Facebook and also as a .com address.
Phoenixxx2007 on May 02, 2013:
I wish I had found this four months ago! I had a massive double pulmonary embolism on Christmas eve- drove myself to the ER at 2:AM thinking I was just hyperventilating from gastrointestinal pain because I had been sick with gastroenteritis. It is a miracle I survived. I could barely breathe and from the time they wheeled me in for the CAT scan within minutes, before I was even wheeled back to my room there were ten people there ready to whisk me away. I had to be taken by ambulance to a bigger facility equipped to handle my case.
Within an hour I had a catheter procedure where they pumped clot busting agents directly into my lungs through catheters inserted in my groin and arms. Because they also discovered I have a hole in my heart I was unable to be fully sedated for this procedure. I had just turned 41, and was a generally healthy robust person. Afterward I heard things like "most clots I have ever seen and had a patient live" and I found out later so done else had the same procedure the day prior and did not make it - same age as me. I was black from the palms of my hands to my biceps, and my groin was black on both sides in a six inch wide swath. I still have the stains from the bruising today. My doctor said it will be another six months before they fade completely.
I was there a few weeks, back to work half days six weeks later, and just last week started full days, which is totally kicking my butt. To read about what seems compared to my experience a "mild" PE and the resulting time frame for symptoms I now understand why I am feeling the way I do still. Four months later it is very demoralizing to have issues lifting things I could have chucked over handed with one arm a year ago. To top it off I have to move in a month and the physicality of it terrifies me. I don't know how I am going to get through it! I mean, I know I will, but the timing really blows!
It is encouraging to read and know there are others who went/are going through the same thing, makes me feel less alone and less of a wuss for not bouncing back better!
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Lena Welch (author) from USA on April 25, 2013:
Talk to your doctor first and foremost. You could ask about pulmonary rehab programs. If you had a lot of damage you may be eligible for one through a hospital or medically oriented gym. You could try yoga or tai chi. They both involve breathing exercises. You could get some meditation breathing exercises as well. If you are familiar with iTunes you can find some at meditation oasis or the meditation podcast that are free. If you have an iOS device you can get an app called breathing that is just a breathing coach.
Also, I should not forget. Time. It took me two years to feel fully recovered.
Suzanne on April 25, 2013:
Am just home from massive co
Lots in the lungs...in am walking some...but I get so tired. I was a very active 77 yr old...what can I do to increase my lung capacity?
all I really want to do is sit!
Lena Welch (author) from USA on April 09, 2013:
I am glad that you found us. There are some great support groups on Facebook and Dailystrength.com that you may find useful.
Kate on April 08, 2013:
Thank you so much for sharing your experience. I am 44 and have small clots in one lung with no leg clots. It has been difficult to find information about what healing would look like. I was sent home from the hospital without much information on what healing would feel like. In fact I was shocked that I didn't just rebound back into my normal life after a few days of rest. I didn't expect to feel so tired and was not expecting the anxiety that occurs with each twinge I feel in my body. My hospital had a video that I had to watch about being on Coumadin and it showed older adults who could still live an active life by playing the piano or switching from bike riding to table tennis. This does not begin to mirror my life of chasing kids, running a house and finishing college. Anyway, thank you everyone for sharing your experiences. I don't feel so isolated.
Lena Welch (author) from USA on April 04, 2013:
I am glad that you found the links interesting. It would be interesting to read about swimmers. I have heard a number of people mention that their athletic friend or family member has had clots. You start to notice these things after you have had one.
Do you have a heart rate monitor watch? If not, you may want one. It can help you to pace yourself. I think there are ones available for swimming, but I am not positive.
With the symptom increases, I recommend that your keep a record and see if there are patterns. I had huge problems with dry air and pollen filled air. You may find certain pools have different chemicals and that some are more problematic than others. You may also be able to see how to pace yourself by recording how your body reacts to activity.
I am glad that you found the clot while it was small. From what I have seen in the comments on my pages it seems that small clots heal more quickly than large ones.
I once found grapefruit seed extract great for my skin. I took it as a tablet. It cleared my face up but after a while I did have side effects of nasty stomach aches and a decrease in gut bacteria. Likely you don't want to try it on blood thinners but once you are off you are off of them you may want to ask a doctor about that idea. You could also ask a doctor about getting the liquid GSE and washing your face with it. I do not know if either would interfere with blood thinners.
If you have questions, feel free to find me at Clot Care.
Swimmer-1 on March 30, 2013:
I am a 40 yr old woman. I was diagnosed with a very small PE 1 month ago. I went on two 14 hr flights 2 months prior to diagnosis and was also taking a contraceptive primarily for my bad skin. My PE diagnosis took me completely by surprise as I am extremely fit - I am an open water swimmer and do an enormous amount of swimming year round and compete at a very high level. I also did regular spinning classes and weight training. I don't recall having any leg pain and I have no leg pain now. I went to my doctor because I found it difficult to take deep breaths , had sore ribs and I just couldn't manage to do the mileage at swimming which I had previously found easy. It took a few visits and a lot of blood tests, x rays and a CT scan before a PE was diagnosed. I was only in hospital one night and am now on warfarin, most likely for only three months. I have really struggled to get any kind of answer about how much I can train - basically I have been told I must do what feels right. I am struggling with this as I am used to pushing myself and feeling a bit of pain, tiredness and discomfort so I just don't know how much is too much. I still get breathlessness though it comes and goes. I rarely have pain in my chest and ribs now. So I started swimming training again 2 weeks after diagnosis which is what my doctor recommended. I am feeling pretty good most of the time but I have lost a lot of endurance. I can swim the shorter distances pretty quickly but can't maintain the pace beyond about 400m though if I go at a slower pace I can cover a good distance and I managed a 4km swim this morning. However after a session a few nights ago which I think I may have swum too quickly, I was a lot more breathless the next day and had a bit of a cough which has since eased up. So I will perhaps slow the pace down but maintain the distance and see how this works. I've no idea how quick my recovery will be as the breathlessness seems to vanish and then reappear. I also find that I can be feeling fine and then out of nowhere comes extreme fatigue. It is interesting reading other people's experiences of PE as there were many things I didn't realise eg. the pain and breathlessness could continue for quite some time after diagnosis which meant I had some very panicky moments. The athletes at risk links were also very interesting for me and I would be interested in finding info about endurance swimmers who've had PE as I haven't managed to find this.
Fredena Moore from South United States on March 07, 2013:
This was very good. Excellent breakdown of information. I learned a lot from this hub.
Lena Welch (author) from USA on February 24, 2013:
Thank you for sharing your recovery. I think it is very important for people to see the variety of recovery experiences. I am delighted that you have been able to get back to your activities so quickly. I am also glad to see that you worked with your doctor on both your physical activity and the supplements.
Best wishes in recovery!
Marc72 on February 24, 2013:
Hello. I'm 40 years old, athletic, and I have been doing martial arts for years. I was admitted to the hospital for a DVT/PE last July 2012. I was released from the hospital after a week and placed on warfarin for six months. I was recently taken off of the drug. While I was on warfarin my INR results were normally between 2 & 3 over the six month period.
This was the biggest hit I have ever received. I did not think someone who works out everyday, eats healthy, does not drink, do drugs, or smoke could ever end up in the hospital. I was wrong.
When I was released from the hospital and went back to my doctor that following week for my first check up. I was given permission to return to the gym and do upper body weight exercises only. After a few more weeks I was given permission to do lower body weight exercises only on my lower body. During this same time period I was given permission to start exercising on the recumbent bike. At first I could not even use the bike, my leg was not strong enough.
I was seeing the doctor on a weekly basis at first. Then on a bi-weekly basis. My INR tests were taken on a weekly basis. I never had any side effects while on the drug.
As each month passed by I was given more freedom by my doctor to do more in the gym. My leg strength began to return slowly on the bike and I was able to increase my resistance and time. My doctor allowed me to return to the dojo to do some cardio work only. No sparring. No kicking. Just upper body exercises.
About two months before I was taken off the medication I was allowed to start light weightlifting on my legs. I was also getting stronger on the recumbent bike and able to perform 30 minutes without any soreness or discomfort.
Now I'm off the warfarin and feeling stronger everyday. My doctor has cleared me to return to my normal activities. I'm going to the gym on a daily basis, I lift weights for 30 min, do cardio for 30 min, and stretch. I'm been going to the dojo twice a week for light drilling. I know the road ahead will be long, but I like challenges. I listen to my body more then ever before and I'm taking baby steps each day.
The cause of the blood clot is unknown. I had numerous tests performed on me while I was in the hospital. A genetic cause was ruled out. My doctor believes I must have received a blow to my leg which caused a clot.
I sometimes worked out two or three times a day. I'm not working out like that anymore. I have changed up my diet, I'm drinking more water, and I've been allowed to start taking supplements. My doctor did instruct me to take one aspirin a day. I'm going for a follow up ultra sound at the end of the month and a follow up with my doctor in May 2013. My doctor does not think I need the ulta sound, but since I requested it, the doctor is granting my request.
I have been mentally beat up over this. I'm having the same reaction as many others have when coming off the warfarin. When I was placed on the drug all I could think about was getting off of it. Then when the doctor fulfilled my dream, all I wanted was to remain on it!
Thanks for listening and thank you for posting! We will beat this!
ElissaLynne on February 20, 2013:
Great site! I got out of the hospital two weeks ago. My severe PEs were caused by an unknown and undiagnosed tumor in my leg. So now I am dealing with radiation and eventual surgery for that along with healing from the PEs. My leg won't be able to heal completely until the tumor is removed so my recovery is going slow. It is nice to hear that others are having the same level of exhaustion and it isn't just me. I plan to get a heart rate monitor and pedometer as soon as I can send someone to get it. I can't drive yet. On the whole I feel positive, I just want to get back to my teaching job and be with my students again.
Holly on January 28, 2013:
Great blog. Great advice. I think I am suffering from Panic Attacks following my P.E. last year. I am seeing my doctor about this and how to go forward. I have also blogged about my experience www.liveholly.wordpress.com x
Lena Welch (author) from USA on January 20, 2013:
I don't know what a "safe" PE is. I know some hospitals have been exploring doing what was done with you and sending smaller, very stable PE patients home. Here is a professional article on the topic: http://emergency-medicine.jwatch.org/cgi/content/f... and http://www.ncbi.nlm.nih.gov/pubmed/22944455
In low risk patients they say you are fine. I am guessing that is you.
Now for changes to make. Ask your GP why you had the clot. If you are very concerned you can ask for a referral to a hematologist to ask that very question. The why is what helps you know f you even need lifestyle changes.
I recommend staying hydrated, avoiding combined oral contraceptives and hormone replacement therapy, and making sure to get up and walk every 2 hours. If you fly, call disability services and tell them your history and ask for an aisle or bulkhead seat. If you ever are bedridden, go in for surgery, or are pregnant just make sure the doctor team is aware that you "have a history or pulmonary embolism". You could get a copy of the ER tests and CT to carry with you if you want future docs to see it or if you do see a hematologist for ideas about the lifestyle part.
Search online for preventing pulmonary embolism. That is the info that will be most useful and cause the least panic. Check out stop the clot or clot connect for 2 great sites. Also, I am building a new site www.clotspot.com for all of my stuff. There isn't much there, but I have started the article on prevention and you are welcome to read what has been written so far.
Donna on January 20, 2013:
I was just at the ER 2 days ago with symptoms that felt like a heart attack. After a lot of blood work and EKG's they sent me for the CT scan and was determined to have as the doctor called it "a small clot in my lower left lobe of my lung".. They released me after 10 hours in the ER with instructions on injection of Lovenox and an Rx for Coumadin. No instructions on what to expect, what exercise or lifestyle changes i should make but only to follow up with my GP for INR testing..
If i let myself think too much about it i get panic attacks and start crying. I hate researching online because all you read about is how fatal it can be and to leave the hospital after only 10 hours makes me nervous, did they do the right thing or is it "just not that bad"?? I try not to focus too much on the negative, I take one minute at a time and take my meds as directed..
I'm scared all the time though and i'm alone with my 3 year old, it worries me..
Thank you for this site and the information you have provided, it has alleviated at least some of my anxiety. I have a feeling the mental aspect will take awhile and i'll need a lot of reassurance from my doc. I don't know how big it is? "small" is all he said, and location "lower left lobe".. They checked my legs and didn't say if anything came up on that, i assume they were clear?
Thank you again for this wonderful information and reading the comments from others help me to feel that i'm not alone.
Lena Welch (author) from USA on January 13, 2013:
It sounds like you are doing the right things. Medications prevent new clots, the body dissolves old clots, the self care will regain endurance in time and tiny doses. Do you have any information about the clotting causes?
Rocket J Squirrel from Washington Boro, Pennsylvania on January 13, 2013:
I just experienced a clot in my left arm and have been diagnosed with multiple clots in both lungs. Upon its occurance I called out "Lizabeth it's the big one!" (a Redd Foxx quote to those younger than I) I am amazed at how tired I am after just a week of treatment in the hospital. I also feel little info is given on how to recover one's health other than take these pills. I would much rather eat properly and exercise right but curing the problem is not in the doctor's interest and for some crazy reason something my insurance company won't consider. I've inquired about joining a gym so I may swim my way back to good health...denied! I've learned to exercise just long enough to break a sweat. More will exhaust me and I'll suffer the next day. Working up a sweat keeps the depression away. Perhaps most importantly in my recovery is finding the silver linings that this can be both a lesson for me and for others.
Lena Welch (author) from USA on December 30, 2012:
I found (and still find) that anytime that my breathing suffers, my heart races a tad and I am a bit more moody than typical. I figure that my body learned to be afraid of shortness of breath back in July of 2008 and it is letting me know to be careful. The cold, dry air triggers my vocal cord issues which in turn makes breathing a bit harder. When this happens, the panic tries to wash over me. I hate the feeling but I know that the jitters will stop when my vocal cords relax. Colds that make me stuffy do the same thing. Pay attention and see if you can find patterns in your panic sessions. Another thing to note is if stress is setting off mood issues. This time of year can be difficult anyway. You are dealing with the mental and physical recovery processes as well as the normal Christmas, New Years, Hanukah, first snow, its too cold and dark out I wish it were summer already stress.
If you can't find a cause on your own, talk to a nurse or doctor. Also, always consider allowing some friendly psychological medications to assist you. They can be a life saver. The brain is an organ as much as your heart and lungs. It may need medical attention as much as the other parts.
Bev Gillespie on December 29, 2012:
I too join all the others in thanking you for this amazingly helpful site. It was a lifeline for me 6 months ago when my lungs were "sprayed" with PEs. All the information comforted me and put me in a more positive state of mind and I accepted that the recovery could take up to a year. But now 6 months later, the depression and mild panic is back for no apparent reason. Has anyone experienced this? I feel like I'm going backwards. Thanks for any help!
Lena Welch (author) from USA on December 19, 2012:
I am so glad that you found us. As a nurse I am sure that you know the horror stories. You sound a lot like me. I did 11 days in the hospital and still wasn't therapeutic.
As HRT often treats mood issues as well as other things and PEs can cause mood issues, I would recommend looking into some medication for mood stabilization. I bet that would help the panic attacks. Many survivors find that this can help a lot. Also, there may be other symptom based things you can do to replace the HRT.
I don't know if progesterone HRT in low doses is an option. I know it can be alright according to some docs for birth control but I have no clue if it can be used for HRT and if the HRT doses are low enough to avoid clots. It would be worth asking - let us know what the results are.
Feel free to browse my other hubs. I have many hubs with a variety of clot related topics. I am trying to fill the void we all find after diagnosis.
Best wishes. Let me know if I can answer any questions!
Kathy caukwell on December 19, 2012:
hi there, thanks so much for your informative site. I am an RN of many years and survivor of bi lateral massive PE. Lucky To still be in the land of the living :) after a week in hospital they sent me home to " manage it all myself" self injecting until my INR was therapeutic. I had to stop HRT yeeks! I have been scare, anxious and having panic attacks!
I was supposed to know everything but all I could find on the net was the doom and gloom until I found your site.
Best info and practical info about post care and expectations
Thanks again so much :)
Lena Welch (author) from USA on December 18, 2012:
I have this vague memory tugging on my brain like maybe I did. I could be wrong though. Let's see if a more recent survivor has any info.
Richard Thompson on December 17, 2012:
This is so useful in aiding recovery. Many thanks for pages like this. Survivors have so much more useful information, than doctors seem to. I have a question, do any other survivors have muscle twitching or spasms? Especially in legs, but all over the body. Not all the time just now and again.
Lena Welch (author) from USA on December 10, 2012:
Hop to my other hub on recovery: https://youmemindbody.com/disease-illness/Recoveri... and read the comments there. What you are experiencing seems to be common. That being said, see if you can find a doctor who can give you an explanation you trust and understand. It took me over a year to solve my coughing and shortness of breath. It was worth asking for a second pulmonologist referral as the second one found what the first one dismissed and my GP couldn't solve.
Tneal on December 10, 2012:
This site is very helpful. I am also a survivor of a pulmonary embolism. I was diagnose with PE last August. And was placed on warfin for 6 months ,but the doctor allowed me to do a year on warfarin. Sense them some times I still get shortness of breath or have a spasm. I am concerned that something else maybe wrong. I have been to the ER time after time and they say nothing's wrong. I see my doctor regularly I've had a CT scan sense my clots and they said I had a Chronic clot which is an old clot that hadn't dissolve but it wasn't harmful to me. Do any of you still have shortness of breath or spasm at times?
Lena Welch (author) from USA on December 10, 2012:
Tom, Thank you for the recommendation. The National Blood Clot Alliance is a wonderful resource and I would be happy to post any links related to them.
Tom on December 10, 2012:
I also recommend www.clotconnect.org as a source of information. The doctor who runs Clot Connect is also a fellow co-founder of the National Blood Clot Alliance (www.stoptheclot.org) that you mention. Here is one of our most recent patient brochures: that you may find helpful:
Lena Welch (author) from USA on November 29, 2012:
You're welcome! It seems that people who move a lot need to continue to move a lot. I guess that is the moral of the story there. I am guessing you fit into the athletes at risk category. Feel free to print and share with doctors. The more people learn out there the less damage PEs will cause to people everywhere.
michelew79 on November 29, 2012:
Thank you so much for providing those links above regarding athletes and clots. It makes sense that a lower resting heart rate, which leads to slower blood flow would increase the chances of clotting, especially when stationary for too long. And the statistic that 85% of people who develop clots on flights are athletes is good proof of this. I knew there had to be some sort of correlation but all my doctors really had no feedback about the matter. Obviously, more research and heightened awareness still needs to be done but it's good to see that there is some info out there. I couldn't find anything so thank you again!
Lena Welch (author) from USA on November 29, 2012:
Glad your clots were found before major damage was done! Keep adding typically daily activities back into your life gradually. They will up your endurance and help you return to full activity.
Lena Welch (author) from USA on November 29, 2012:
Hi Michele - you asked for more information on athletes and clots. Check out the following links:
Brandy on November 27, 2012:
This site is wonderful. I am only 34 and my PE hit me from out of nowhere while at work. I thought I was having a heart attack! You have given me more info in 5 minutes than I have gotten in the past week. I have only been out of the hospital for 6 days. You are a blessing!
Elaine McQuade on November 26, 2012:
Your tips and recommendatons are invaluable, as you said when you leave hospital the only real medical contact is with the anti coag clinic who are there to get our inr levels correct but other than that I gather its just a matter of being patient and awaiting your body dispersing the clots and hope at the end of it you resume normal life.
I was diagnosed with bilateral PE on 31st Oct after being treated for pneumonia for the 2 weeks previous, as it happens I did have pneumonia and this is why the A & E didn't delve an further at my 1st visit, on the 2nd visit to A & E , post 2 courses of antibiotics I was still being treated for pneumonia when the pain presented in the other lung - it was on the ward that night the consultant noticed I had a sun tan and ordered a CT scan for the following day which came back with blood clots on both lungs with an assumption I had suffered a DVT on the flight home from Turkey - no further checvks. I am 4 weeks post diagnosis now and have some quite good days where I can go for a walk and carry out light housework, but I also have days where I am completely floored. My GP has told me to take it easy as the clots are still there but how easy is easy as I normally live at 100 MPH being a single mother of an Aspergers teenager with a full time job - can't wait to feel well again. E x
Michele on November 25, 2012:
Thanks so much for this info well done! You mentioned in one of your comments that athletes are more affected by travel?? Can you expand on that? I am (well was) a big gym rat and speculate that intense exercise has some kind of correlation with PE's. Do you know anything about this?
Lena Welch (author) from USA on November 22, 2012:
If you look at the survey on this site and on my hub recovering from a pulmonary embolism what to expect during pulmonary embolism recovery, you should get some ideas about what others have experienced. If you have been sick at all remember to add that sick time back in because it sets you back and you have to gain that time back. If endurance is a problem and your doc is ok with exercise, get a heart rate monitor watch and a pedometer and start to set walking goals with a max heart rate and avg rate. You can increase time, exertion, and endurance by making sure you stay in the correct heart rate and start small. Swimming or stationary biking are other ideas. Just make sure to track heart rate and to start small. Also, log your progress so you can see the change.
Dagný on November 22, 2012:
Thank you for all this information. It was like reading about myself, how I feel 9 month after my Embolia in both lungs. The doctors haven't explained anything what to expect during recovery. They think I shouldn´t feel short of breath, fatigue and all the other symptoms you explain. I as so glad to realize that I am not making this up or mentaly ill or just breathing to much like my doctor mentioned today! I am sad not knowing how long I should expect to feel like this but you are so right that it can bad for few weeks and then fine for few weeks..... I am just hoping I will be able to go back to play volleyball soon but at the moment I can't even play for 10 min.
Lena Welch (author) from USA on November 15, 2012:
You are very welcome! If you haven't already, read my other hubs on the topic. The full list is at https://hubpages.com/@lwelch. Also, feel free to contact me through Hubpages.
Kimber on November 15, 2012:
Thanks so much for this wonderful info. I went to the ER on 11/10/12 because I'd been short of breath all day and started having chest pain. Thankfully I was paying attention to my body because it was determined that I have bilateral emboli in my lungs and 1 in my leg. I had NO idea! My mind has been spinning with all of the questions and concerns stated here and on your other pages. Today is 11/15/12 and I hope to be heading home in the next day or so. I knew I had to be monitored closely for a while but I had no idea this diagnosis is ongoing and will impact many other areas of my life. I'm scared and overwhelmed. Thank you for affirming my feelings - physical and emotional - and giving me essential info that I couldn't find elsewhere. I'm sure I'll be back to your pages.
Richie Mogwai from Vancouver on October 31, 2012:
Amazing work on this hub, certainly the most definitive body of work I have ever read on the subject of pulmonary embolism. I guess there is a lot of useful information that can be accumulated by a person who actually experienced the malady. Congratulations to the writer.
Gerry on October 08, 2012:
I have had a good recovery and am exercising with the blessings of my doctor. Starting Pilates soon and have been reading about rebounding. I want to try it. Has anyone elsse tried this?
Tammy on October 04, 2012:
thanks so much i have 5 kids, my last i had a pulmonary embolism with im now of all my medicine, but i had anxiety already, now im very perinoid thinking its coming back, every little pain i think its back, i can't cope its affecting my life, trying to figure out what i can do to help with it not to come back. I lost my mom when i was a child never ever would want my children to go through that, Its very scary any advice will help, what can i do to try to prevent another one? I breastfed my baby through all this, The pediatrition and my doctor said it was safe, i freaked about that as well, People tell me im a hypochondriac , My babies need me so whatever will help i will try, these doctors down here are crazy they only kept me in the hospital for like 2 days i seen my doctor every 2 weeks to make shore the warfarin was working right and had my inr were it was, and then when the 6 months were up im off.
Lena Welch (author) from USA on October 02, 2012:
You are welcome! Doctors really have no great answers on recovery. Mine told me to walk but that was about it. Feel free to share my variety of hubs on the different recovery topics with your doctor. If he finds any errors - let me know so I can fix them. Best wishes, glad that you found us!