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Pulmonary Embolism: Want to connect with Blood Clot Survivors:
Im new to this forum and look forward to speaking with everyone. I hope this can be a help to all.
I was diaginosed with a Bi-Lateral PE and had over 100 clots in boths lungs and left leg during COVID. I was diagnosed with a Bi-Lateral PE and 100 clots in both lungs and left leg. After doing a ton of blood work and not really getting answers the doctors leaned on COVID. After 2 test both came back negative. So after a week in the hospital and really no answers I was released.
Me and my wife had to fight to get me in to see doctors we thought would be helpful to find out what was happening to me. I was told I had APS and a couple weeks later told I didn't. The doctor told us very proudly that I no longer had APS due to me not being able to have a miss carriage. After switching doctors I thought we were on the right path. Turns out after wasting 4 years and me saying I had enough we pushed for one last hope.
My neice had been sick for a while and getting the run around. Her mother had reached out to the Mayo Clinic and fell in love with everything there. After hearing the stories and praise I thought I should go out on a limb and try also. I am so glad that we did. We have been mind blown at how professional everyone is and how they spend time breaking down everything to you. After being told by the doctor at Mayo she thought what I had been misdiagnosed it kinda knocked all the wind out of my wife and I. Then the doctor picked up the pieces and started showing us why she said this and how the local hospital/doctors I been going to where wrong. Im happy to say its going to be a long road but we are slowly getting where we need to be.
I leave this post with this. If you ever have a dought or want a second opinion don't be scared to go and get it. It just might save your life.
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@camoz7156, it is great to hear of your experience at Mayo Clinic after what must've been a very scary ordeal. I have moved your discussion to appear in several related groups including Lung Health, Heart & Blood Health and Post-COVID Recovery so that you can connect with other blood clot survivors like @scraik @jwb1948 @thankful @kndaustin71 @olafsonj123 @kjcarlson @ladyaceintx1 @cherrry @maryj65 and more.
You may also be interested in this related discussion:
- Looking for others with Pulmonary embolisms https://connect.mayoclinic.org/discussion/looking-for-other-with-pulmonary-embolisms/
@camoz7156, how are you doing now? Are you on any treatment? What precautions do you take to avoid future embolisms?
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1 Reaction@colleenyoung I had a saddle pulmonary embolism the last day of March 2025 All of my posts have been on Eliquis. Somehow I hadn't seen a pulmonologist and only now have an appointment for the end of March. My primary care has scheduled an x-ray, nicely that will be in a couple of days. In the beginning I could not breathe lying flat and still fine sleeping upstairs on the couch works better and I get to see Venus in the morning because I'm up coughing. Now off of Eliquis and still working through side effects. whether my cough originates from my lungs or sinus, not sure, but choking cough to get up lumps of phlegm. As far as future embolisms are concerned, the reasons they formed in the first place no longer exist, but my "blood" doctor said that if I suddenly had a swollen, painful leg I should go immediately to the ER. It happened while I was visiting my son in another state. So I did. My leg was fine, evidently no clot. But my heart rate was 33 and my early Christmas present was a pacemaker. I am an ancient and, even having four children, had never been in a hospital for more than overnight, so all of this is a new voyage.
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1 ReactionPE folks. I am so glad you are here. In October, I had my first unelected hospitalization for Organizing Pneumonia, In mid November, my son died and 5 days later, I was hospitalized with a PE. I then had a 2nd unelected hospitalization. AI suggests these 2 events did not occur in a vacuum, but may be post covid-related.
I am coming on 2 months of recovery but still live with low pulse Ox and windedness. On blood thinners and any bruises look wicked.
My cousin related he’d had a PE in the 90s and recalled it took months to recover. look forward to having a group mind about recovery ….just emailed my doc about any kind of rehab programs out there….cuz i think i need support to get ‘my wind back’. anyone know about online rehab options?
Six months or so before my PE, I noticed that my left left was a little larger than normal. I showed it to various friends, family members but didn't think it was a blood clot because I had no inflammation or redness. In July 2022, I noticed that suddenly when I walked across the room I had trouble catching my breath. I blamed it on allergies. The next day I not only couldn't catch my breath but was feeling like I was going to faint.
Went to emergency and told them I have heart disease (CAD) they immediately took me back. In triage they ran an EKG - within 10 minutes or so the doctor came in and said I was either having a heart attack or PE. They had already admitted me, if it was a heart attack I would undergo stints in the morning, or if PE they would perform the procedure to bust the clots (I didn't have to have it).
They immediately started me on Heparin and told me I would most likely be in the hospital a few days.
A CT scan determined blood clots in lung and 3 still in left leg. I responded very well to the Heparin and was switched to Eliquis the next day and dismissed.
The clots in lung were causing right heart strain which is the reason I felt like I would faint, the blood was not pumping to my heart the way it should.
I was seen by an ER doctor, Cardiologist and Pulmonologist immediately in the emergency room. I am being followed by both doctors and will be on Eliquis the rest of my life. Luckily, I take it with no issues.
They determined the cause of my clots was an estrogen cream I was using to help prevent UTI's. They took me off of it immediately.
Note: I was 75 at the time and in good shape. Healthy diet and exercise, good weight. The doctors told me that I could have died with the size of blood clot in my lung but for my strong body condition.
@ljchr you should find and read my recent post in lung health. My situation was very similar to yours except for the underlying cause. I have repeated most of what I posted here in case anyone else see this and has had DVT and PE eventsm I am a 69 year old male. In early December 2025, I had massive PE in both lungs, DVTs in both legs and right ventricle to left ventricle ratio of 1.5. I assume your heart issue was similar. I suspect my underlying cause is an undiagnosed autoimmune disease. I can't get my PCP or Specialist seen to agree and do further testing. When providing just facts and symptoms to AI, it comes back supporting my views, suspected causes, which appears to be forms of vasculitis and even recommend s specific further testing and medications to treat symptoms. Since my directors literally almost killed me, had I waited another 24 hours to go to ER in early December 2025, I was told I would likely not survived. I had an earlier unprovoked DVT in April 2025 in left leg, put on Eliquis for 90 days. 10 days after stopping I had a suspected DVT in right leg, an ultrasound was unable to confirm, but I was put back on Eliquis for another 90 days. By not keeping me on Eliquis after October 2025, I had the recurrence in December 2005.
I'm just now starting to connect the dots. I had my only Covid infection in December 2024 (I was seated on an airplane next to a woman who was clearly sick and coughing violently on a 2 hour flight). It did not require hospitalization but I was still extremely sick for a few days. Fast forward to June 2025 and I started having pains in my ribs and back and then July 4th weekend I was admitted to the ER with severe PE. I've been on Eliquis since then and still struggling to get back to my baseline in terms of fatigue and "windedness". All along it's been called "unprovoked PE" but now I'm starting to wonder if there is a connection to Covid. I will discuss next month with my doctor.
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1 ReactionHope you are able to find relief. I also suspect that maybe Covid has something to do with my condition of persistent 'air hunger'
I am under the impression that, if one has had Covid vaccinations, that there is no way to tell if they were infected with Covid.
What say the Group?
@ljchr what was the name of your estrogen cream?
It was Estradiol.
I have had long covid since 2020, in October 2025 I was in ER with bilaterall PE. They told me the estradiol cream couldn't be the cause but there were not other risk factors. I just finished three months on eliquis and the hemotologist said to stay on it for 3 more months then retest (Thrombitic risk profile?) for Now my feet and hands are blue or cold sometimes no explanation. I suspect it's related to long covid but no one will believe me. Where to I go for help?