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Pulmonary Embolisms (PE) That Magically Develop - No DVTs
Blood Cancers & Disorders | Last Active: Aug 30 11:28am | Replies (12)Comment receiving replies
Hello, so great to find this site. I am dealing with multiple pulmonary emboli in both lungs. Totally unexpected. Was on a walk and went into tachycardia which eventually resolved. EMTs suggested follow up blood work to check for possible heart attack. At first, I thought the ER doctor had the wrong patient when he told me that I had multiple emboli in both lungs! Fast forward to 1.5 years later, and still not a firm diagnosis. I have a wonderful hematologist out of Cleveland clinic that is really digging into this, but still after 3 blood draws (9 vials of blood each time) every 6 months, no final diagnosis yet. At first, we thought it was lupus related, but the numbers that are wonky in July resolved in November.
No one will talk to me about covid (had it 2 times (first time before vaccines and it was very bad) and a super bad lower respiratory infection prior to the diagnosis. I was never hospitalized with covid, so this variable excludes covid as a possible reason) Also, received 2 J&J covid vaccines. Will be on Eliquis for the rest of my life (I am 63 years old and very active; walk daily and still working full time. I just messaged my hematologist to see if I can be tested for Factor V Leiden. good luck to all of you! Cindy
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Hello, I too had massive bilateral pulmonary embolisms (both lungs) without ever having a DVT. The episode completely took me by surprise. Note every patient is different. Due to my age, I am told to stay on Eliquis 2.5mg tablets twice daily for the remainder of my life. Doctors at first did not know why I clotted. I am negative for Factor V and VIII. No history of any blood clots in my family history either. Today, more doctors are thinking the J&J Covid vaccination in 2021 may have caused it (I had it three months prior to clotting.) I will say, I had to change hematologists as the first one put me on the initial dose of Eliquis 5mg twice daily and she kept me on it for a year! I had no idea that the medication was going to cause me issues! Taking the Eliquis at this high dosage for about a year, I developed a lot of muscle and nerve pain in my legs to the point that I needed a walker. I experienced internal tremors in both legs and went to see a neurologist even. I struggled with the pain as it caused me not to be able to sleep even. Tylenol did nothing to help. Finally, I sought out a new hematologist who explained that I should not be on such a high dosage for maintenance! We decided to cut the dosage in half. Within a few months the pains started to subside somewhat. Fast forward to a year later, I was able to walk on my own. No more walker nor cane. No pain in my legs. I now exercise with a recumbent bicycle and feel like my old self pre-clotting. Doctors now tell me not to get any booster shots too. Oh, and I never had Covid ever. Be aware of all medications. Get a hematologist you are comfortable seeing as well. Good luck.