Looking for others with Pulmonary embolisms

Posted by kjcarlson @kjcarlson, May 2, 2023

Have had multiple pulmonary embolisms. Looking for others to support and be supported.

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I am new here, but in 2017 I suffered a major pulmonary embolism. I had a massive blood clot land on saddle-valve by lungs and heart, and several dozen small clots in lungs. I was in the ICU for 11 days. They removed the massive clot (over 4") and blood thinners cleared the clots in my lungs. Months back I was diagnosed as having post phlebotic syndrome, amongst many other things (see bio). The surgeon after surgery to remove large clot told me afterwards..., "I didn't want to say before surgery until you were out and it was successful, but the clot you had was what is called the widow-maker, and the one I had was largest he had seen to that date, and I was extremely lucky to have survived it." Where did the clot come from? my left leg, two weeks prior to embolism I injured leg when car door slammed on it.

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Just got out of hospital. I had a gastric bleed, lost a lot of blood then fell and broke my collarbone. They found a PE at the hospital. I am short of breath and wobbly. Will I be short of breath the rest of my life??

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@gina5009

Have they found the cause of your clots. Usually it is something like Atrial Fibrillation. I know a couple of people who have had Ablation which knocks out the electrical system in the heart that is causing the clots. Many times the clots form in the legs if people have varicose veins. Compression socks seem to help a great deal. And there is a new procedure where they put a filter in the Carotid Artery and this prevents clots from getting to the brain.
You might want to ask your doctor about any of these possibilities.

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I had the clot following Hip replacement. I asked for the Artery filter, but apparently the Artery that normally receives the filter had a problem, and thus the filter was not installed. At 92, I am sure some of the "plumbing no longer is in the best condition" I do also have edema in my legs, but it is from the amount of surgery I have had. Knee replacement, hip replacement, removal of DERMATOFIBRSARCOMA, AND shoulder replacement, and simple breast removal, all on the right side, and then, knee replacement and hip replacement and radical mastectory on left side. It is very difficult for me to reach down far enough to put the sock on and I have tried the "Sock Helpers" but can't seem to manage it. I wish to thank you for your suggestions, and concern. It is wonderful we have this place to express our help and I feel very lucky to be a participant.
Gina5009

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I had a DVT November 2021, the doctor believed it was a fluke that I got it so I took Eliquis for 7 months then was taken off. November 2022 I ended up in the ER couldn’t breathe and stabbing pain lower right back. Was sent home after CT scan (no dye or further radiology scans)and was told I had pneumonia. Thankfully I went to a different ER in the area where they did more scans and found out I had PE’s in both my lungs along with pneumonia. I was sent home on Eliquis again, however, I started coughing up blood the next day and I went back to the ER and was admitted to the hospital for 2 days on a heparin drip. I was sent to hematologist and rheumatologist where I had bloodwork done which showed I have Antiphospholipid Syndrome. Had no clue that was gonna happen at all! I am now on Warafin for the rest of my life. Real scary. I’m only 48.

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@bmoregrl

I had sudden onset in July 2020 - fainted so went to ER and the clots were in lungs and the saddle area between. I’m lucky to be alive. ICU w heparin 3 days, another 4 in hospital- on elloquis for life. They told me the clots had to have been in my groin or hips or legs then traveled to lungs. I never felt any symptoms of clots before they hit my lungs. I do have 2 blood mutations - factor 5 Leiden and Prothrombin.

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blood mutations could be the cause, iv had pe and dvt several times and in 2019 found out i have apl (anit phospholipid) disease which is also caused by lupis but the pe's has caused damage to my lungs

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@zimme

blood mutations could be the cause, iv had pe and dvt several times and in 2019 found out i have apl (anit phospholipid) disease which is also caused by lupis but the pe's has caused damage to my lungs

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Wow ok. I've been tested for blood disorders. Is that the same things? There were four tests. All negative. Is your breathing difficult now?

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yes i use o2, it took 40 years to get diagnosed, it was a blood test and came back positive and to confirm had to be done a second time 12 weeks later.

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@zimme

yes i use o2, it took 40 years to get diagnosed, it was a blood test and came back positive and to confirm had to be done a second time 12 weeks later.

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Oh wow ok. Thanks for responding.

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@bmoregrl

I had sudden onset in July 2020 - fainted so went to ER and the clots were in lungs and the saddle area between. I’m lucky to be alive. ICU w heparin 3 days, another 4 in hospital- on elloquis for life. They told me the clots had to have been in my groin or hips or legs then traveled to lungs. I never felt any symptoms of clots before they hit my lungs. I do have 2 blood mutations - factor 5 Leiden and Prothrombin.

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Something similar happened to me a couple of weeks ago: collapsed at home, nearly fainting, unable to breathe. Admitted through the ER & found to have a submassive PE in both lungs and the saddle between them. The right ventricle of the heart was twice the size of the left and the tricuspid valves weren’t functioning. Entire femoral/popliteal vein had clot except where it had broken off to the lungs. Had a thrombectomy the next day because heart strain and breathing problems were still severe. Procedure went well but had unexpected complications afterwards including bleeding, blood pressure issues, and developed consolidated pneumonia in the left lower lung. Glad to be alive and home though, since it wasn’t a sure thing when we were on the way to the ER that day. ( I will try to upload a picture of the results of the procedure- clots removed and from where). It was scary but staff were so helpful and calm that I actually wasn’t worried until it was almost time for discharge!

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@kjcarlson

The last two were provoked with a surgery and another procedure. This last one, I have no clue. Double dosing of Eliquis currently and will always be on the med now.
Did you know you had a clot in your leg? Im familiar with having DVTs but the last two PEs, they didn't know where the clots came from.
Are you using any blood thinners?

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@kjcarlson
I had no DVT symptoms on my leg and since all my injuries were on the left side of my body, I became immediately suspicious when I woke up having Shortness of breath with inspiration and a sharp pain on the right lower posterior lobe of my right lung. I had not been placed on any anticoagulants following the accident. That day, I had an appointment already scheduled with my Ortho and held off going to the ER and saw him. He didn't believe me or my reported symptoms, even though I could point to the exact spot where I could feel the pain. He thought it was just some undetected kidney injury and performed an xray. By that time, the pain was pretty bad and I insisted that he order a CT scan at the local hospital just across the street. After the scan, the Ortho called me himself and there was a long pause as he finally said "you were absolutely correct in the location of the clot and I'm admitting you right now". Following my discharge, I obtained a better and more competent Orthopedist.

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