8 years ago I had my first PE. Unprovoked. I thought I was having a severe anxiety attack. I never went to the hopsital. A month later, I almost collapsed. This time I was in the ED and they found another clot, along with the first one that was still healing. A year later, same thing, one and then a month later another one.
I am on xeralto for life. The warfrin didn't work, I had two of my clots while on it.
I know it is scary to have this happen. Worse when you don't know if it will rear up and happen again.
I had sudden onset in July 2020 - fainted so went to ER and the clots were in lungs and the saddle area between. I’m lucky to be alive. ICU w heparin 3 days, another 4 in hospital- on elloquis for life. They told me the clots had to have been in my groin or hips or legs then traveled to lungs. I never felt any symptoms of clots before they hit my lungs. I do have 2 blood mutations - factor 5 Leiden and Prothrombin.
Oh my that's scary. It's good to know that you have blood mutations where as Im a mystery but still have the same fate by using Eliquis for the rest of my life.
Do you have to do anything else or differently because you have factor 5 or blood mutations?
My husband collapsed on Thursday after a triple heart bypass 8 days earlier. He's had X2 PEs one in each lung, apparently quite significant we've been told. He's on injections whilst in hospital,been told he'll be on medication for at least 6 months . Just wondering if anyone has had something similar happen following heart surgery. How do they monitor the Clots after discharge,can you live a normal life. Asking lots of questions but answers are not forthcoming.
Thank you
I think if someone has had more than one PE, blood thinners should be a lifelong thing. I've had bilateral pulmonary embolisms twice AMD multiple DVTs and doctors can't figure out why. I'll be on Eliquis the rest of my life and plan on leading a normal life with maybe less activities that are dangerous where I could hit my head hard.
If your husband's cookies had weed ashtrays been provoked by a surgery, doctors say blood thinners until the clots are gone. That's my experience.
I was sitting with my husband when his electrocardiogram suddenly went straight up and straight down. I told the nurse something bad was happening and she called the code. They gave my husband two jolts with the electrodes and converted his EKG to some type of normal and took him off to the Cath Lab with no promises. It was found he could not swallow 3 days following surgery. The doctor later stated they thought he might have had a small stroke.It became necessary for them to surgically insert a tube into his stomach to feed him and then began the rehab to teach him how to swallow again. It took about 3 months for him to fully regain his ability to swallow and have the tube removed. They taught him how to avoid water or food going down his windpipe. He never had an embolism, but they had him on a full aspirin for some time and then on baby aspirin after that. They also started him on Warfrin, but this was just too much for him to monitor and office visits regularly. His life was pretty normal. Watchful but otherwise very normal. He was at home, he had his grandkids visits and pretty much enjoyed life.
Gina5009
Hi I just got diagnosed with PE on Thursday 05/25/23 and I’m frightened
All I can think is I’m going to die. I started Eliquis and it scares me. I’m just scared and feel alone and I don’t want to leave my family and pass away. I know nothing about Eliquis or what it’s supposed to do. I know not much about PE. Just heard about it a few days ago.
There are unfortunately a ton of people on Eliquis. It's a great blood thinner to be on. I can't tell you how to feel but know that I've been there and have had my share of bouts with PE's. It's scary, terrifying and not fun but you're on the right track. I think it's good your on this chat group. Reach out to people for advice and comfort. Do not use Google for advice.
As of March 1, I have multiple embolisms in both lungs. I was hospitalized for diverticulitis and during this they decided to cat scan my lungs because of shortness of breath. Low and behold, a spattering of small clots in both lungs. I was immediately put on Heparin for two days by IV, then sent home with Eliquis, two times daily. I was first on oxygen level 2..but weaned off. I cannot get up and do much of anything without getting winded and having rapid (hard) heartbeat. This scares the heck out of me. I have a nurse that comes once a week to check on me. Blood pressure, oxygen levels, etc always check out ok when sitting. i also suffer from terrible anxiety and depression and neither of these help the situation.
I hear you. It's terrifying. The shortness of breath gets better after a few weeks once the blood thinners are kicked in. I supposi struggle with mental health so just know you're not alone.
As of March 1, I have multiple embolisms in both lungs. I was hospitalized for diverticulitis and during this they decided to cat scan my lungs because of shortness of breath. Low and behold, a spattering of small clots in both lungs. I was immediately put on Heparin for two days by IV, then sent home with Eliquis, two times daily. I was first on oxygen level 2..but weaned off. I cannot get up and do much of anything without getting winded and having rapid (hard) heartbeat. This scares the heck out of me. I have a nurse that comes once a week to check on me. Blood pressure, oxygen levels, etc always check out ok when sitting. i also suffer from terrible anxiety and depression and neither of these help the situation.
Hi I just got diagnosed with PE on Thursday 05/25/23 and I’m frightened
All I can think is I’m going to die. I started Eliquis and it scares me. I’m just scared and feel alone and I don’t want to leave my family and pass away. I know nothing about Eliquis or what it’s supposed to do. I know not much about PE. Just heard about it a few days ago.
Go to a pulmonologist!! You should have received education from you doc about your blood thinner. It does not sound as if you are getting good medical care.
I went to the gp and he wasn’t concerned so I’ll just carry on. A pharmacist at work did some sort of training on line and found that my hrt patch maybe the cause even though my specialist said he couldn’t find any evidence so I’ll show him what she screenshot to me
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8 years ago I had my first PE. Unprovoked. I thought I was having a severe anxiety attack. I never went to the hopsital. A month later, I almost collapsed. This time I was in the ED and they found another clot, along with the first one that was still healing. A year later, same thing, one and then a month later another one.
I am on xeralto for life. The warfrin didn't work, I had two of my clots while on it.
I know it is scary to have this happen. Worse when you don't know if it will rear up and happen again.
You aren't alone. HUGS
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2 ReactionsSorry, this was many years ago, and he has been gone for some time now. Thank you for your kind words.
Oh my that's scary. It's good to know that you have blood mutations where as Im a mystery but still have the same fate by using Eliquis for the rest of my life.
Do you have to do anything else or differently because you have factor 5 or blood mutations?
I think if someone has had more than one PE, blood thinners should be a lifelong thing. I've had bilateral pulmonary embolisms twice AMD multiple DVTs and doctors can't figure out why. I'll be on Eliquis the rest of my life and plan on leading a normal life with maybe less activities that are dangerous where I could hit my head hard.
If your husband's cookies had weed ashtrays been provoked by a surgery, doctors say blood thinners until the clots are gone. That's my experience.
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1 ReactionScary. Glad he is ok.
There are unfortunately a ton of people on Eliquis. It's a great blood thinner to be on. I can't tell you how to feel but know that I've been there and have had my share of bouts with PE's. It's scary, terrifying and not fun but you're on the right track. I think it's good your on this chat group. Reach out to people for advice and comfort. Do not use Google for advice.
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Helpful -
Hug
1 ReactionI hear you. It's terrifying. The shortness of breath gets better after a few weeks once the blood thinners are kicked in. I supposi struggle with mental health so just know you're not alone.
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Helpful -
Hug
3 ReactionsAs of March 1, I have multiple embolisms in both lungs. I was hospitalized for diverticulitis and during this they decided to cat scan my lungs because of shortness of breath. Low and behold, a spattering of small clots in both lungs. I was immediately put on Heparin for two days by IV, then sent home with Eliquis, two times daily. I was first on oxygen level 2..but weaned off. I cannot get up and do much of anything without getting winded and having rapid (hard) heartbeat. This scares the heck out of me. I have a nurse that comes once a week to check on me. Blood pressure, oxygen levels, etc always check out ok when sitting. i also suffer from terrible anxiety and depression and neither of these help the situation.
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Helpful -
Hug
3 ReactionsGo to a pulmonologist!! You should have received education from you doc about your blood thinner. It does not sound as if you are getting good medical care.
I went to the gp and he wasn’t concerned so I’ll just carry on. A pharmacist at work did some sort of training on line and found that my hrt patch maybe the cause even though my specialist said he couldn’t find any evidence so I’ll show him what she screenshot to me
-
Like -
Helpful -
Hug
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