Connect
Pulmonary Embolisms
I recently had a hospital stay with 2 days in ICU and a few days on a floor. I had difficulty breathing. I went to a BJC ER on Dec 8 where my O2 was low at 89, I was put on oxygen, then had chest X-ray and CT Scan with Contrast. The CT Scan showed massive (medical term used) pulmonary embolisms in both lungs with pulmonary embolisms in lobar, segment and subsegmental branches in both lungs. It also showed a right ventricle to left ventricle ratio of 1.5, a ratio of 0.6 is normal. It also showed deep vein thrombosis in both legs. I was put on heparin. Within an hour, l was transported by ambulance to a larger BJC facility (Big Barnes) due to no Pulmonologist/Vascular Doctor. After the heparin, I was put on Lovenox followed by the starter dose of Eliquis 10 mg twice daily and have been on the regular dose of 5 mg twice daily.
It has been a difficult recovery. Lungs feel very irritated, still experiencing shortness of breath and O2 ranging from 89 to 91. I feel like my discharge from hospital was premature. I have previously posted that I have an undiagnosed, untreated and progressive disease since April 2023. A six to eight week period of immobility from this disease was the primary contributing factor to my ER visit and subsequent Pulmonary Embolisms diagnosis. I would of liked an effort to determine the underlying disease and symptoms while in one of the top hospitals in the country. Has anyone had a similar experience? How was your recovery?
Like
Helpful
HugInterested in more discussions like this? Go to the Lung Health Support Group.
Connect
In Jan 2025, I had a pulmonary embolism due to a dvt. (Get comfortable, cuz this is long) I went to the Cleveland clinic (one of 3 hospitals). I don't know the measurement of the embolism. CC was a nightmare! From horrible nurses screaming at me in the middle of the night to their final diagnosis of you are fat, lose weight and your shortness of breath will go away. Ummm, ok?
I went then to University Hospital after chest pain and shortness of breath (mind you I was told if I had shortness of breath, I should go to the ER). They ran a d-dimer test (NO repeat blood clot, BUT now they decided because of chest pain, I should be admitted. They ran EVERY test known for heart issues, plus a heart cath. NO reason can be/could be found for the SOB. Referred me to Mayo clinic. (THE most polite, professional people I have ever met!) Diagnosis: Residual effect of PE. That was in Sept 2025. I went off my O2, and haven't been on it since........until yesterday.
I am not sure (and of course "no clue" from UH doctors) why I am not feeling well. I began to have sob. I have my own O2 machine, went back on the O2. I am extremely sick to my stomach, have some mucus, but have sob too! I do NOT understand WHAT or WHY this is happening! Why the sudden sob after MONTHS of having normal breathing? I spent yesterday in the hospital where they ran the d-dimer tests and had a cat scan. Thankfully no recurrent pe. (I'm on Eliquis too) I hope this is just the flu and I get back to normal VERY fast!
Thanks for reading.
Hi Sarah,
There is not too much activity in this Lung Health Support group, I do have several things in common with you. Did you see my post from last week. Do you monitor your 02 at home with an oximeter, mine has been running between 89 and 91, Have they determined any likely cause of your DVT? Do you have any autoimmune disease. I have had an undiagnosed untreated autoimmune disease for going on to 3 years. I recently discovered on my own that an autoimmune disease can significantly increase the risk of DVT and PE. In my case I was on Dec 9 shown to have DVT in both legs, massive PE in both lungs and 3 additional PEs in smaller branches in each lung. I also had a Right ventricle to left ventricle ratio of 1.5, normal is 0.6. This puts a strain on the heart and is pretty severe.
My follow-up after 4 days in hospital, including 2 days in ICU, is with a Nurse Practitioner end of this month with no test to be performed. My next follow-up is in April 2026 for an echocardiogram. I was put back on Eliquis too, had a DVT in April 2025, fairly expensive through my Medicare Advantage, it is about $190.00 for a 90-day supply. I too have continued to experience shortness of breath. I could be in a recovery phase for several more months and there is a possibility of permanent damage to lungs and legs. My PCP throughout this has been of no use, he is new for me, and I started seeing him in March 2025. I am in a PPO plan, so I do not need his referrals. I believe I had some early warning signs going back to July 2025. I feel like a few Doctors including my PCP should be held accountable for ignoring symptoms. With your shortness of breath (SOB) do you have and irritation or scratchy feeling in your lungs, let me know if and when your SOB resolves or gets better. Any COPD issues? What is your age? I am a soon to be 69-year-old male.
Seems like most good information I get is through AI, that has proven to be very accurate.