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?
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!!
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!
This will be my second PE and I never saw it coming! No pain like the first. Had an SVT because of it and got to experience my first ambulance ride. Apparently I was planning on my husband driving me to the hospital but dropped on the driveway instead. Heart beating in the 230’s they gave me adenosine and cardi something and were ready with the shock pads too, just case. Echo was clear, venous duplex in both legs showed nothing. Now on blood thinners again. What I wanted to ask was if anyone is familiar with Factor V Leiden gene? It is a genetic disorder that makes you more susceptible to blot clots. Because it is hereditary it makes perfect sense, I have this mutant gene, as does my sister and mom. You can get it from Mom and/or Dad. Having the double gene makes the chances greater for PE’s. Does the Elequis make you tired?
Dopler showed legs weren't cause of lung clot. I've taken 81 mg asprin for years.
Cardiologist says no cardio system involved. Waiting to see pulmonologist to see if he has any info.
I was diagnosed 2+ weeks ago on 3/18/24 with an atypical Pulmonary Embolism with no distal thrombi, it's in an unusual location and appearance. I do not have any of the usual indications except my age. I am looking for information. The 1st CT scan report says there is a soft tissue mass that could be sarcoma. the 2nd CT scan says it is an intraluminal filling defect. We have a shortage of doctors in Santa Cruz, CA. I cannot see a Pulmonologist until 5/8/24. Stanford denied an appointment because they want a referral from my Pulmonologist. I do not have Factor V. I appreciate any suggestions!
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?
Just got out of hospital where I was diagnosed with a PE in one lung. Dopler didn't show it came from legs. Was on oxygen before this & have had to go up to 4. Also on xarelto for 6 months, Dr says.
My very fit husband had 3 embolisms that developed two days after a colonoscopy. Go figure. Six months on Xarelto (blood thinner) and he was good to go. Be patient…and be grateful they caught it!
I was diagnosed 2+ weeks ago on 3/18/24 with an atypical Pulmonary Embolism with no distal thrombi, it's in an unusual location and appearance. I do not have any of the usual indications except my age. I am looking for information. The 1st CT scan report says there is a soft tissue mass that could be sarcoma. the 2nd CT scan says it is an intraluminal filling defect. We have a shortage of doctors in Santa Cruz, CA. I cannot see a Pulmonologist until 5/8/24. Stanford denied an appointment because they want a referral from my Pulmonologist. I do not have Factor V. I appreciate any suggestions!
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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!!
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!
This will be my second PE and I never saw it coming! No pain like the first. Had an SVT because of it and got to experience my first ambulance ride. Apparently I was planning on my husband driving me to the hospital but dropped on the driveway instead. Heart beating in the 230’s they gave me adenosine and cardi something and were ready with the shock pads too, just case. Echo was clear, venous duplex in both legs showed nothing. Now on blood thinners again. What I wanted to ask was if anyone is familiar with Factor V Leiden gene? It is a genetic disorder that makes you more susceptible to blot clots. Because it is hereditary it makes perfect sense, I have this mutant gene, as does my sister and mom. You can get it from Mom and/or Dad. Having the double gene makes the chances greater for PE’s. Does the Elequis make you tired?
Dopler showed legs weren't cause of lung clot. I've taken 81 mg asprin for years.
Cardiologist says no cardio system involved. Waiting to see pulmonologist to see if he has any info.
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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1 ReactionJust got out of hospital where I was diagnosed with a PE in one lung. Dopler didn't show it came from legs. Was on oxygen before this & have had to go up to 4. Also on xarelto for 6 months, Dr says.
My very fit husband had 3 embolisms that developed two days after a colonoscopy. Go figure. Six months on Xarelto (blood thinner) and he was good to go. Be patient…and be grateful they caught it!
I was diagnosed 2+ weeks ago on 3/18/24 with an atypical Pulmonary Embolism with no distal thrombi, it's in an unusual location and appearance. I do not have any of the usual indications except my age. I am looking for information. The 1st CT scan report says there is a soft tissue mass that could be sarcoma. the 2nd CT scan says it is an intraluminal filling defect. We have a shortage of doctors in Santa Cruz, CA. I cannot see a Pulmonologist until 5/8/24. Stanford denied an appointment because they want a referral from my Pulmonologist. I do not have Factor V. I appreciate any suggestions!
I’m so sorry. Recovery from a PE takes time. Be patient with yourself and the process.
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1 ReactionI have pulmonary embolism in both lungs and short of breath on elequis but feel like it’s not helping