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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.

Interested in more discussions like this? Go to the Lung Health Support Group.

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dawn46 | @dawn46 | Jun 6, 2025
In reply to @colleenyoung "Welcome, @dawn46. I moved your post about your recent pulmonary embolism to this active discussion: -..." + (show)
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Welcome, @dawn46. I moved your post about your recent pulmonary embolism to this active discussion:
- Looking for others with Pulmonary embolisms
https://connect.mayoclinic.org/discussion/looking-for-other-with-pulmonary-embolisms/
I did this so you can easily connect with members like @lcwilkie @bateman @sadiecat @ladyaceintx1 @kjcarlson @sallygirl and many others.

Dawn, in addition to the unnerving news that you experienced a pulmonary embolism, it sounds like the diagnosis isn't a clear one. Are you on any medications until your appointment in May?

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Colleen,
I missed this and want to thank you for moving my post! How kind of you. I wasn't able to do much of anything for 11 months. It turned out that I have a small fibroelastoma (benign tumor) next to my pulmonary valve in my pulmonary artery. It's very uncommon and after fighting for 11 months for a 2nd opinion found that the new Dr. had another patient similar to me and didn't recommend open heart surgery because it is a real big deal surgery for a small tumor. If I could live with not knowing exactly what was in my artery he was fine monitoring me. He also thought due to modern advancements in scans, it found a tumor I most likely had most or all of my life. I highly recommend 2nd and 3rd opinions and avoiding all unnecessary surgeries, and looking at inactive ingredients in all pharmaceuticals. Taking Elequis almost killed me, but my doctors thought it was the PE that I didn't have. I wish you all good luck navigating your health!!

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hdwoman | @hdwoman | Jun 8, 2025
In reply to @dawn46 "I don't have a PE, but I have experience with Elequis. I have a fiberoelastoma next..." + (show)
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I don't have a PE, but I have experience with Elequis. I have a fiberoelastoma next to my pulmonary valve in my pulmonary artery. They didn't know what it was for many months and had me take Elequis.
I suggest looking at the inactive ingredients of Elequis. It contains Anhydrous Lactose and Microcrystalline Cellulose among other chemicals. Other countries will not purchase pharmaceuticals containing these chemicals. They have awful side effects. Our Pharma companies sell it in the US because it's an inexpensive filler and binder for the pill, and we allow it.
If you are sensitive to dairy as I am these chemicals are dangerous. I almost died taking these chemicals. They are in almost every blood thinner and asthmatic inhaler. On Elequis, I was exhausted, couldn't breath, dehydrated, but was bloated, had social anxiety, confusion, and everyone around me expected me to die any moment. I went from power walking and going to the gym every day to barely being able to walk 10 steps. My doctor gave me a handicap placard!
Once I convinced my doctor I couldn't take Elequis they gave me Dabigatran (Pradaxa). It's the blood thinner they use for patients with digestive sensitivity. It was a little better but still contains Microcrystalline Cellulose.
It took over 6 months being off all blood thinners to feel like myself again. I wish you the best in your quest for medication you can survive and thrive on!

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So sorry you had to go thru all that! I was on Elliquis for a while last year due to a PE, lower right lung. Two X rays later, it was gone! I had no side effects, but I asked my doctor if I could stop taking it and go back to taking my usual krill oil and 2 baby aspirins a day. She cleared me for that. I'll never know why I wanted to stop taking it, I just did. Maybe this was why? Sometimes our bodies just know.

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