Patient Comments: Pulmonary Embolism - Symptoms

Question:What symptoms did you experience with your pulmonary embolism?

Comment from: 25-34 Female (Patient) Published: July 31

I had chest pain which came first, then I became breathless and my lips became a little blue. I managed to still stand though I went light headed. The pain was like a burning stabbing type and some inflammation was evident. It was putting pressure on my lungs and lying down was painful. I had five days of Clexane 120mg and a perfusion scan on the six. All was clear and the pain and breathlessness was much diminished so I was discharged. I became breathless and the pain increased on lying down flat and when I bent over. My sats were normal although my FBC showed a high reading regarding anticoagulant. This and my symptoms pointed them towards PE. Scan was clear so I am on no medications, but am worried it may return. If there was a clot (small) would 5 days of Clexane clear this and if it was a clot can it return?

Comment from: 25-34 Female (Caregiver) Published: July 31

I am glad to see that all of you survived your pulmonary embolism episode. However my precious daughter Alexandra did not get the same privilege. I lost her on June 8th. She had just celebrated her 30th Birthday on April 1st. The reason why I am writing today is because I got her final autopsy report this morning. It took me all that time to gather the courage to go back to the hospital and get it. Alexandra had been in a wheelchair all of her life as she was born with spina bifida and was paralysed from the waist down. She had been hospitalized for a whole week and since the doctors could not find anything wrong with her even though I insisted on the fact that her right leg was more swollen than usual, that she complained about pain in the abdomen and that she was wheezing. She was sent back home and died one week later. I hope my story does not discourage you. Alexandra already had a long medical history and gone through so much in her short life. The odds were against her I guess. I miss her so much. Please listen to your inner voice and when you sense that something does not feel right, have it checked at once. Do not delay.

Comment from: Mim, 35-44 Female (Patient) Published: July 15

I was 37 years old when I was diagnosed with several emboli in my left lung. I went to the doctors for months with shortness of breath, pain in my shoulder and chest, and lightheadedness. I also was sent home from the emergency room with bloody sputum. When they finally did a CT scan and an echocardiogram, they found several in my lungs and my vena cava. I didn't have any risk factors, but I had bronchitis earlier that year and I traveled once (we stopped the car several times and walked around, too). I spent four days in the hospital and was on Coumadin for 9 months. Diet is extremely important - there is a book about Coumadin diets. The doctor just kept apologizing for missing them, but I am scared whenever I am short of breath or have any type of shoulder pain now. The most important thing is to be persistent - I asked several times if it could be clots and was ignored.

Comment from: SaraRN1980, 25-34 Female (Patient) Published: July 15

I had been Sweating like a pig for weeks, dripping sweat for an activity, like putting away dishes or making the bed. Two doctors ignored my complaint of sweating. Then, I developed higher blood pressure, up to 179/105, but my doctor told me to just take more of my blood pressure medications, and it came down to 140/100. Finally, I started having a low fever for 5 days, and blood pressure went back to 169/105 with the higher dose of medications. I persisted with a 3rd doctor, 1st she checked my blood for thyroid problems. When that came back okay, she did more blood work and a CT scan with contrast of my lungs. Sure enough, the CT scan showed a quarter size clot in my right upper lobe of the lung, and tissue had died. I had a chest X-ray incidentally 3 weeks earlier, for something unrelated, and that didn't show the clot or dead tissue either. So my advice is to PERSIST, if you FEEL something is wrong with you, don't take no for an answer because there are A LOT of incompetent doctors (I know, I am a Nurse)!

Comment from: 8180JMB, 25-34 Female (Patient) Published: June 29

After giving birth, I had DVT in my leg. Within two days it developed into a pulmonary embolism. It went into my lungs. The ER doctors gave me an X-ray, and told me there was no sign of bronchitis or pneumonia which I knew. (I told THEM that it was a clot, and was ignored.) I was sent home three nights in a row and they told me to put a heat pack on my back. I did that and my back blistered. I didn't even know I had blistered because the pain of the clot in my lungs was overwhelmingly painful. I thought I was going to die! It wasn't until I went to a different hospital that doctors took notice of what was happening. Three weeks later I finally went home. I want people to know that if you get DVT and your lungs start hurting soon afterwards to go to hospital and make doctors take notice of what's going on! I'm sure I would've died had the second hospital sent me home.

Comment from: kevins wife, 45-54 Male (Caregiver) Published: May 04

My husband has been diagnosed with pulmonary embolism and is being treated with Coumadin (warfarin). Since being put on this, he has become confused, weak, trembley, staggers, and at times can barely speak clearly (garbled). He has been off work for almost three months now and the doctor says there is nothing wrong with him. I am not able to leave him alone for very long since he may become confused and do something very risky. Is this normal? I am at my wits end and our financial situation is going down the drain as well. He is only 45 years old, but is increasing becoming more of an invalid than is expected. I need someone else's take on this condition.

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