Pulmonary Embolism

Question:

Tell us your experience with pulmonary embolism. Submit Your Comment

Comment from: phud9252, 19-24 Male (Patient) Published: September 22

I’m a college athlete and suffered a knee injury last year which caused a bilateral pulmonary embolism. I was in the hospital for a few days thinking the experience was surreal. I moved on with life and felt like I have made a full recovery but this summer I realized that if I work out for around a week straight symptoms creep back into my life. At this point I just have to roll with the punches and hope it turns out fine.

Comment from: Hapee2bhere, 55-64 Female (Patient) Published: August 04

I had no real warnings of my pulmonary embolism (PE). Middle of the night, I had severe pains in my lungs/chest. My hubby took me to the emergency room. I was diagnosed with extensive bilateral PE, collapsed lungs and partial middle lobe dead due to lack of oxygen from clots in my right lung. I spent one night in the hospital, will be on blood thinners for 3 months and then testing to confirm if HRT (hormone replacement therapy) was the culprit or it was something else.. Even though doctors say I shouldn’t, I still get occasional pain and am easily tired after 4 weeks, but nothing I can’t get through.

Comment from: Ski, 55-64 Male (Patient) Published: May 27

I experienced two blood clots in each lung in July 2019. I was in the hospital for five days to treat the pulmonary embolism and now I am on Xarelto for lifetime. I get tired and out of breath very easily. I was told I would eventually get back to normal, but I don’t believe so, because I can’t seem to get past the shortness of breath and fatigue.

Comment from: Wendyz, 45-54 Female (Caregiver) Published: May 15

My pulmonary embolism (PE) hit suddenly. I had no idea I had a deep vein thrombosis (DVT). I had a cramp in my thigh, then terrible chest pain, light headedness and shortness of breath. I’d been to the emergency room and although I’d had a previous DVT and was taking estrogen medication, I was not checked for a clot. I was diagnosed with an infection and treated with IV antibiotics for 3 1/2 weeks before the PE was diagnosed.

Comment from: PJ, 55-64 Female (Patient) Published: April 21

In March 2019 I had an extensive deep vein thrombosis (DVT) in my left leg from my pelvis to my ankle. I also developed bilateral pulmonary embolism. For both I was in the hospital for five days, and I am now on Eliquis 5 mg twice a day for life. Mine are diagnosed as unprovoked DVT. Both my lungs were quite full. A year later, I’m still very fatigued, with body aches, and shortness of breath when I exercise, lift, or walk. My balance to stand on one leg is ridiculous. I’m 64.

Comment from: Tammy, 45-54 Female (Patient) Published: February 18

Two years ago I underwent a surgery and developed a pulmonary embolism (PE). I had chest pain and shortness of breath (SOB) every day for 15 months. Two years later I still get SOB very easily and seem to get sick much more easily. Before my PE I never got colds or suffered from any viruses. Now I seem to be always getting sick and it also takes me a really long time to recover. I get tired easily and don't have the stamina I once had. I can't find anything that will validate that this is from the PE but I am convinced it is.

Comment from: Gill , 25-34 (Patient) Published: February 13

I woke up in the night with a cramp in my calf. I started to get a swollen ankle. Three weeks later I woke up in the night with extreme right side chest pain and difficulty breathing. I went to the doctor and I got blood taken, an x-ray, radionuclide scan and a CT scan, which showed I had a pulmonary embolism. I am now on rivaroxaban for 6 months. I had no history of DVT (deep vein thrombosis), so they believe it was caused by my contraceptive pill. I have been taking codeine and paracetamol for the pain which is worse at night.

Comment from: Tami, 25-34 Female (Patient) Published: January 13

I am 32 and was diagnosed with a pulmonary embolism about 5 months ago. I suffer awful joint pain in my shoulders and hands. I was wondering, too, if this was normal as it is often unbearable. As I work on my computer, it is difficult to type and my joints become nearly immobile in the mornings after I sleep. I wondered if it had something to do with decreased oxygen to the extremities.

Comment from: Pat, 55-64 Male (Patient) Published: January 07

The first time I had pulmonary embolism I felt 3 zips go through my heart and the next day I felt like I broke a rib. I went to the hospital. It got worse until I thought my heart was going to explode. The second time I woke up with back pain and spit up blood. Pneumonia and pulmonary embolisms. I could barely walk. Eight months later I still have pain.

SLIDESHOW

Spider & Varicose Veins: Causes, Before and After Treatment Images See Slideshow
Comment from: scared, 45-54 Female (Patient) Published: October 24

I am scared. About 10 months ago I crawled into the hospital unable to breathe. Doctors gave me IV drip and told me to go home but I kept insisting I couldn’t breathe. Seventeen hours later they discovered deep vein thrombosis, a clot that led to a pulmonary embolism (PE). Today, my right calf is always tight especially after exercise, I have an ongoing flicker of pain near my heart, off/on lower back pain, upper leg numbness and my lungs feel weak. Doctor(s) say it will probably all go away, but reading all of this and having PE history I feel I might die/relapse.

Comment from: Morgan, 55-64 (Patient) Published: October 01

It started with a cough that wouldn't go away. Then after a couple months, I had sharp pains under my left ribs and shortness of breath. The breathing problem continued to worsen very quickly and I drove myself to the emergency room. I had pneumonia and pulmonary embolism that blocked blood circulation permanently damaging both lungs. It was 2 years ago and I still get dizzy and short of breath when exerting in physical activity. I'm too young for social security and disability, it says I don't qualify to receive benefits.

Comment from: Kim, 45-54 Female (Patient) Published: September 11

I had driven from Boston to Las Vegas and stopped for a coffee at a gas station. Someone found me there on the bathroom floor unconscious. I had lots of small clots in my lungs (pulmonary embolism) and heart and my oxygen level was super low. I had a massive black eye and damaged both ACL (anterior cruciate ligament) and MCL (medial collateral ligament) in one of my knees and broke the patella in the other in my fall. Ever since, my breathing is harder and I am always getting sharp chest pains, especially at night. It’s scary expecting it every day.

Comment from: Tony, 75 or over Male (Patient) Published: August 12

After reading all of these comments from people who have experienced (deep vein thrombosis) DVT and pulmonary embolism (PE), it almost looks hopeless. I am a 76 year old male, very healthy until 10/19, experienced DVT in my right leg, and PE in the upper lobes of both lungs. I survived because of great emergency room response in the hospital. I am now on Xarelto, recommended for life. Symptoms now are extreme fatigue, lower back pain, and being extremely short of breath. After countless tests, pulmonary and heart, doctors say I am fine. I am at a loss, and don’t know what to do.

Comment from: LadyArwen, 35-44 Female (Patient) Published: July 29

I had diffuse pulmonary embolism in November 2016 after starting IVF therapy. Unknown at the time that I had the factor II genetic abnormality. I was started on Pradaxa 150 mg twice a day. After six months I tried coming off it and threw another clot in three weeks. Now I am on Pradaxa for life. Still almost three years out I have intermittent upper back pain that I can find no other source for.

Comment from: Gabe, 25-34 Male (Patient) Published: July 18

I was recently diagnosed with a saddle pulmonary embolism. I was in the hospital for 9 days, with 4 in the ICU. I was on heparin drop and warfarin pills, and had to be on the breathing machine. It was scary. After this I went to a cardiologist and he gave me eliquis. He said it was better for me. I have been scared hoping there won’t be any bleeding. If people cough up blood, go to the emergency room fast and ask for a CT scan. At first I was just told I had allergies and was sent home. And I was back a few days later.

Comment from: RAJESH, 35-44 Male (Patient) Published: July 05

It's been 12 days since going to the hospital and being diagnosed with pulmonary embolism. Not much follow up yet, other than getting referrals. The extreme pain is gone. I feel fatigued daily and get winded doing regular tasks like walking to the car, going up stairs, and I feel like my balance is off (balance disturbed) and I have a slight dizziness. I am struggling with the doctor and the therapist. No help yet. I have constant anxiety and balancing issue in seating, standing, and walking.

Comment from: Sal, 65-74 Female (Patient) Published: July 01

I am a 65 year old female and I had a pulmonary embolism (PE) 3 years ago. It occluded most of my right lung. I have continued to take rivaroxaban. I was never given an explanation as to why I had this. I have seen many specialists since this event. I have remained extremely tired, breathless and demotivated and no one can give me answers or treatment. I was a smoker and obese with severe osteoarthritis. Despite my neglect of myself I was a fit fat person and worked very hard at a senior executive level in my profession.

Comment from: Neale, 35-44 Male (Patient) Published: August 22

I had been in hospital with extreme tiredness, sharp pain in my back and shortness of breath. I was diagnosed with mild pneumonia in my left lung. After 2 weeks of antibiotics I was back at the hospital as I still didn’t feel right. My D-dimer was elevated and CT scan revealed a bilateral pulmonary embolism (PE). It turns out I had severe lower leg calf pain about 8 weeks prior and presented to my general physician who diagnosed muscle strain. It may have been a deep vein thrombosis but I’ll never know. Pneumonia saved me as I was tested for PE!

QUESTION

Deep vein thrombosis (DVT) occurs in the _______________. See Answer
Comment from: Amethyst , 35-44 Female (Patient) Published: August 10

It's been 12 days since going to the hospital and being diagnosed with pulmonary embolism. Not much follow up yet other than getting referrals. The extreme pain is gone. I feel fatigued daily and get winded doing regular tasks like walking to the car, going up stairs, and I feel like my balance is off and I have slight dizziness. I am struggling with stopping smoking and have expressed this to the doctor and the therapist. No help yet. I have constant anxiety.

Comment from: Dani2018, 45-54 Female (Patient) Published: June 04

I am a 47 year old female, not on any estrogen, don’t have cancer (that I know of), and don’t have a family history of blood clots. My first pulmonary embolism (PE) was in March of 2017, a saddle pulmonary embolism. So I thought I was protected by the IVC filter. Then bam, out of nowhere, no signs or symptoms, ten months later on March 3, 2018 I had a bilateral pulmonary embolism. So now IVC filter is back in for life they say, and am on Eliquis 5 mg 2 times daily. I have already seen a hematologist, and nobody can say what caused these PEs. Now I’m told I have cataracts in both eyes. I have memory loss. Every day is a struggle. I also had a fusion surgery back in 2016. Now I’m still struggling, lost my job, etc. My life as I once knew it is now gone. I have no income at all, my husband does his best, and I’m so thankful for him. I ask all these doctors that I see now, and nobody can give me an answer why I keep developing blood clots in the right calf. I’m as active as I can be with the severe pain in lumbar region. I’m exhausted when I wake up and days just go by. I can’t even say the back surgery was a culprit, 1st PE was before back surgery. I’m completely exhausted.

Comment from: besthiker, 45-54 Female (Patient) Published: March 26

I had pulmonary emboli 30 years ago. I was 23 at the time and I had it for a little over a year before correctly diagnosed. Since I didn't smoke, no one thought of it despite shortness of breath and then severe chest pain and abnormal chest x-rays. I had it so long that I developed pulmonary hypertension and the doctor didn't think I would live. I did (!) with some permanent lung damage but I was generally okay. I stopped taking Coumadin after a year. Thirty years later, I developed them again though this time I caught them sooner. There was no obvious cause. Still I didn't recognize it for a while as I didn't have all the symptoms I had before. I am not nearly as bad this time. I am writing to show doctors they should consider this possibility in any patient with shortness of breath or chest pain that is not getting better even in young patients. I even had one emergency room (ER) doctor tell me I was wasting his time coming in to the ER with severe pain!

Comment from: Georgis, 55-64 Female (Patient) Published: November 08

Twenty years ago I suffered back pain. It turned out it was pulmonary embolism, treated back then with 6 months of warfarin after 1 week on warfarin drip in hospital. Six months ago (March 2017) I had a bad cough which was treated with high codeine dose. I became breathless, and blood test indicated possible blood clots. No pain indicated and CT showed clots in both lungs. I was on Xarelto for 6 months; lungs are clear but Xarelto recommended for life.

Comment from: Brokenhearted, 0-2 Male (Caregiver) Published: October 05

My son developed sudden onset of shortness of breath, rapid breathing, and called 911. He was extremely pale, cold and paramedics thought he was having an anxiety attack. I told them my sister had expired with a pulmonary embolism. My son cardiac arrested en route to hospital and died at the age of 47. A deep vein thrombosis was found on autopsy, which had been asymptomatic.

Comment from: Angelina, 45-54 Female (Patient) Published: May 26

After my pulmonary embolism diagnosis a few months ago I have had constant pain in my left shoulder, elbow, wrist, knee and hip. And very horrible cramps in my left leg. Sometimes I can't control the pain with medications and it brings me to tears. No matter which way I move I can't get any relief. So cruel. I like to know if anyone else has this. The inside of my left elbow aches so bad at times I want to have my arm off. Honestly unbearable. I'd hate to think what it would be like without any pain relief.

Comment from: Melissa S, 35-44 Female (Patient) Published: February 22

In July 2016, I found out I had a deep vein thrombosis (DVT) in my left knee. I was encouraged that the blood vessels in that area were small, and I shouldn't worry about a pulmonary embolism (PE). About two weeks later I had some shortness of breath and very slight chest pain. At the encouragement of my coworkers, I went to the doctor and was told I had a clot in my lower right lung. Ironically, earlier that day I was in the hematologist's office telling him about feeling my heart flutter. He said it was anxiety and left it at that. I was admitted for the PE. I received an IVC Filter and Lovenox injections. I actually wound up having a kidney stone that no one recognized in the process. The stone was the worst of my symptoms. I currently have another DVT in my right thigh and am worried about another PE, even though the first one wasn't so bad, I know they can be dangerous. This time I will be on long term Xarelto.

Comment from: alicialynn1972, 35-44 Female (Patient) Published: October 20

In April of this year, it was discovered that I had extensive blood clots (pulmonary embolism - PE) in both my lungs, more so in my right lung. My INR was 0.8 and the doctors were baffled as to how this even occurred seeing that I was fairly healthy. I was given 5 bags of Coumadin along with heparin. I spent 6 days in the hospital. I am now taking Xarelto. The oncologist suggested that I take it for life since they do not know how I developed PE.

Comment from: SRINIVASH, 45-54 Male (Patient) Published: September 16

I developed a pulmonary embolism in January 2015. For a period of 10 days it could not be diagnosed, even by a senior cardiologist. He made me undergo several tests including treadmill, echo, ECG, and CT scan and I did not want to go for treadmill as I am not in a position to walk properly, yet he made me run on it. I could not walk/run for a few seconds. After 2 days I was admitted to the hospital, the duty doctor who was a simple MBBS identified from the symptoms and supplied oxygen. With the advice of the hospital’s senior doctors the treatment was started. Within a week I was perfect, though it was too late to identify from the symptoms. I was not able to walk even a few steps, had breathing problem and could not stand up in the wash room. There was no severe chest pain. It is my humble request to the viewers/readers not to take this disease lightly, as it can end up in losing one’s life. Contact the physician immediately.

Comment from: Kevin, 55-64 Male (Patient) Published: August 11

I am a male 59 years old in June 2016. I had a double pulmonary embolism on 2 June. I went to work on the morning in question, just doing my daily duties I felt dizzy, and I passed out for about 3 to 4 minutes. I then went home and then went to our Accident and Emergency. I had shortness of breath and pains in chest, and while in hospital I had a heart attack. I then was sent to CT scanning room to find that I had a double embolism on my lungs. Now I am on rivaroxaban 20 mg daily. Since this has happened to me I just felt tired all the time.

Comment from: kk, 25-34 Female (Patient) Published: December 31

I had my pulmonary embolism 3 days after giving birth to my daughter. I felt so short of breath and was nearly fainting. They ran some test and found out I had pulmonary embolism. I am still taking Coumadin now, I still feel short of breath and have mild chest pains which eventually go away. My INR is so far in the range for 3 consecutive checks. I still fell exhausted easily.

Comment from: fred, 55-64 Male (Patient) Published: November 24

I had 2 deep vein thromboses in my left calf 7 years ago. I did the Lovenox shots for a month then Coumadin for a year. On May 14, 2015 I felt like I had pulled a muscle in my left pectoral. I then had headaches, body soreness, and really tough workouts. Energy zapped, and blood pressure 175/159 sent me to the emergency room. I had pulmonary embolism in both lungs, and a 6 mm nodule. Treatment was Lovenox shots till blood thinned, and now I am on 3 mg of Coumadin forever. I feel good most of the time, but I get down physically and emotionally from time to time. I am a 63 year old gym rat and jeweler.

Comment from: acorns21, 75 or over Female (Patient) Published: September 02

At age 77 I had a pulmonary embolism (PE) while resting in my recliner. I was fairly active walking my large dog 2 times a day, and had not traveled in over 2 years. Hospital stay was 3 days, I was put on heparin, then Coumadin. Doctor tried warfarin but it made me really sick. It caused a very painful swollen upper right of abdomen. I stayed on Coumadin for 6 months. After 10 days I was able to walk the dog again and drive short distances. I see both heart and lung specialists once a year and all seems to be fine. From reading other blogs I see that I am not your typical PE patient.

Comment from: Dr. Jay, 65-74 Male (Patient) Published: May 05

After a long bike ride (3 days, 100 km per day at 80 degrees) I got shortness of breath. It is 1 year out with a pulmonologist since finding the pulmonary embolism, doing Symbicort, 2 inhales BID, warfarin 7.5 mg SID. I have plateaued with treatment. I am reasonably functional, can ride 100 km, needing 1 hit of albuterol after 40 miles. I was told I've got asthma and COPD, but am 'insensitive to obstruction'. I am grossly dissatisfied with treatment results, but maybe I'm just old. I am currently on short term prednisone at 20 mg SID for 4 days, then 10 mg SID for 4 more days. Expiratory force monitor is 300 first thing in the morning and then goes to maybe 400 midday.

Comment from: Zanele, 45-54 Female (Patient) Published: May 19

My chest was tight and I had shortness of breath. My son called 911, then my doctor sent me to a specialist, and then they told me that there was a clot in my lungs. I stayed in the hospital for 17 days to treat the pulmonary embolism.

Comment from: Lucy, 65-74 Female (Patient) Published: November 09

I had a vein ablation (leg). A week later I was in hospital with AE (arterial embolism) and PVT (portal vein thrombosis). Today (4 days out of hospital) doctor reduced my blood thinner. My level was in the 4 range. Tonight I'm experiencing back and chest pain.

Comment from: Laurela, 55-64 Female (Patient) Published: November 04

Five weeks after ankle tendon surgery (on Lovenox for the three weeks that leg was immobilized), I returned to biking for exercise and very light weight work in the gym. I woke up a couple mornings later thinking I'd pulled a muscle, at my shoulder and middle ribcage. The pain grew worse, and it became impossible to draw full breath. At the hospital, they did a CT scan with dye and found several emboli in lower lobes of both lungs. I’m now on Xarelto for foreseeable future. In the interest of disclosure, I do have the C677T clotting disorder and had made two short flying trips within three weeks of ankle surgery.

Comment from: Ray W, 75 or over Male (Patient) Published: February 06

I felt a very heavy weight pressing on chest. The pain was exacerbated by lying on my back. I thought I was having a heart attack. Initial treatment at the hospital indicated the doctors were also suspicious of a heart attack. I had a CT scan, where the doctors found an embolism in left lung. I am now on Lovenox and Coumadin.

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