Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Just as people feel your PE could have been prevented, I too feel the same thing. However, mine was not because of an incorrect diagnosis, because the ER Doctors suspected I had a PE within 10 minutes of me walking into the ER and I was actually diagnosed with a SEVERE Saddle PE within 30 minutes of entering the ER!
WHY? Because I had a cast on my right leg and an air cast on my left ankle and it didn't take a rocket scientist to figure out that I had been bed/chair ridden for the last 2 weeks. It also shouldn't have taken a rocket scientist to take "precautionary measures" so that I wouldn't get a clot (or 2, or 3 or 4) while I was bed ridden.
UNFORTUNATELY, an Orthopedic Doctor did not know enough that he SHOULD have put me on a low dose of warfarin, or had me wear tight stockings as a preventative.
THE OUTCOME: I am VERY LUCKY to be alive today!!!! And thats according to what all the doctors and nurses have said to me in the last 2 months!!!
IF ONLY my orthopedic doctor would have prescibed a Warfarin pill to me as a preventative;
I would NOT have almost died!
I would NOT have to have been in the hospital on 2 different occassions for a total of 15 days, While my 4 year old and 5 year old missed me tremendously while they stayed with their Aunt.
I would NOT have to have went from taking no medicine on a regular basis to NOW taking 14 prescription medicines!
I would NOT have to went from working 60-70 hours a week (as a single parent) to now being told I may never be able to go back to my job I have been at for 17 1/2 years!!!
I would NOT feel like sleeping all day, every day!!!
I would NOT be on Oxygen 24/7.
I would NOT have to stay inside all the time when it is Hot and Humid. Instead I could be outside, in the pool, or the jacuzzi or trampoline playing with my kids.
I promise, I will continue trying to remain positive even though I have this bitterness feeling inside me also towards my ortho doctor. I keep asking myself, Why, Why, Why????? But, it's not "Why me". Its more of a "WHY? WHY would he of not warned me or taken precautionary measures?"
Do you know how many people in this world are "lucky to be alive" because of this scenerio???? What about how many people have died because of this scenerio?
Should we discuss all of the peope that have been miss diagnosed? Or should we discuss all the people (R.I.P) that left this world never even knowing they had a PE?
OMG!!! WE, as a group, need to do something. We need to make the world known about this terrible killer!!! We all know, Doctors and Nurses (unless they have been thru one themselves)have NO clue what PE's feel like, the aftermath we all have been thru, the side effects of all the medicines, the pains, hairloss, loss of appetite, vomitting, depression, anxiety, loss of energy, tiredness, etc......
Like most new people that come to this site say, they never new this site existed. Lets get the word out there! Facebook, Twitter, word of mouth, tell your friends, hell, lets start a chain letter! lol
Sorry about my LONGGGG post! I still ask myself, what if he only would have........ And then I think of the next patient of this ortho doctor who is bed ridden for weeks and then what? I can't help feel like I MUST DO SOMETHING TO PREVENT THE "next lucky person" to be alive OR............maybe they didn't make it...........................
WHY? Because I had a cast on my right leg and an air cast on my left ankle and it didn't take a rocket scientist to figure out that I had been bed/chair ridden for the last 2 weeks. It also shouldn't have taken a rocket scientist to take "precautionary measures" so that I wouldn't get a clot (or 2, or 3 or 4) while I was bed ridden.
UNFORTUNATELY, an Orthopedic Doctor did not know enough that he SHOULD have put me on a low dose of warfarin, or had me wear tight stockings as a preventative.
THE OUTCOME: I am VERY LUCKY to be alive today!!!! And thats according to what all the doctors and nurses have said to me in the last 2 months!!!
IF ONLY my orthopedic doctor would have prescibed a Warfarin pill to me as a preventative;
I would NOT have almost died!
I would NOT have to have been in the hospital on 2 different occassions for a total of 15 days, While my 4 year old and 5 year old missed me tremendously while they stayed with their Aunt.
I would NOT have to have went from taking no medicine on a regular basis to NOW taking 14 prescription medicines!
I would NOT have to went from working 60-70 hours a week (as a single parent) to now being told I may never be able to go back to my job I have been at for 17 1/2 years!!!
I would NOT feel like sleeping all day, every day!!!
I would NOT be on Oxygen 24/7.
I would NOT have to stay inside all the time when it is Hot and Humid. Instead I could be outside, in the pool, or the jacuzzi or trampoline playing with my kids.
I promise, I will continue trying to remain positive even though I have this bitterness feeling inside me also towards my ortho doctor. I keep asking myself, Why, Why, Why????? But, it's not "Why me". Its more of a "WHY? WHY would he of not warned me or taken precautionary measures?"
Do you know how many people in this world are "lucky to be alive" because of this scenerio???? What about how many people have died because of this scenerio?
Should we discuss all of the peope that have been miss diagnosed? Or should we discuss all the people (R.I.P) that left this world never even knowing they had a PE?
OMG!!! WE, as a group, need to do something. We need to make the world known about this terrible killer!!! We all know, Doctors and Nurses (unless they have been thru one themselves)have NO clue what PE's feel like, the aftermath we all have been thru, the side effects of all the medicines, the pains, hairloss, loss of appetite, vomitting, depression, anxiety, loss of energy, tiredness, etc......
Like most new people that come to this site say, they never new this site existed. Lets get the word out there! Facebook, Twitter, word of mouth, tell your friends, hell, lets start a chain letter! lol
Sorry about my LONGGGG post! I still ask myself, what if he only would have........ And then I think of the next patient of this ortho doctor who is bed ridden for weeks and then what? I can't help feel like I MUST DO SOMETHING TO PREVENT THE "next lucky person" to be alive OR............maybe they didn't make it...........................
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
Awareness and continuing education of health professionals is one of the goals of the National Blood Clot Alliance. Its founding and growth was driven by experiences such as our own.
www.stoptheclot.org
"pulmonary embolism ranges between 350,000 to 600,000 per year with an estimated 100,000 deaths per year. Recent numbers from a study by Dr. John Heit from the Mayo Clinic suggest the numbers may be much higher. While the statistics may vary the numbers are staggering. NBCA is working every day to increase awareness about thrombosis and thrombophilia and help to Stop The Clot"
Dr. Heit's study suggests nearly 300,000 deaths per year. Out of that number, only 7% of those patients were even diagnosed as having a blood clot. If properly diagnosed and treated, many of those deaths would have been avoided. Interestingly the study found that a lot of cancer patients, who are at high risk of DVT/PE due to their treatment, died not as a result of the cancer but due to a PE.
As More2Be mentions, that is why the National Blood Clot Alliance (www.stoptheclot.org) formed back in 2004. W
Regards,
Tom
I know lots of women whose clots were caused by birth control feel the same way about getting the word out there. There is something to be said about education and awareness for sure and especially when its all new, you feel like, do people know about this?? Now, if I know someone is having surgery, I mention, hey, ask about warfarin treatment to prevent clots. If someone mentions they have pain in their calf, I will suggest paying attention to it and getting it checked out.
But the thing is, I also dont want the PE experience to enter every conversation I have at work or at a party or with my family. Ive mentioned this in other posts, but I have a brother who had cancer when he was 21. He survived, but his illness profoundly affected me. He didnt spend all his energy educating people about cancer or talking about it. He spent time trying to get well, to accept what was happening to him so that he could move forward and spend time enjoying his family and friends, despite being terribly sick. I thought about him a lot when I had the PE and how he handled his life while fighting cancer (he survived). It helped me focus on what I needed to do to go on living the best life I could in my new post PE world.
Theres fine line of becoming an advocate and completely letting this event consume ones life. For me, and again, Im only speaking for myself, the PE/DVT is not who I am. Its part of my life experience, but so is living with ulcerative colitis, breaking my nose (twice) and my arm all in the same year, tearing ligaments in my knee when I was a teenager, having precancerous moles removed from my body due to sun damage, having a goiter along with 6 cysts on my thyroid, going through perimenopause, which makes PE recovery look like a cake walk these days (kidding sort of ) and all the other crap that you go through in life. While we owe it to others to bring awareness , the first priority is to ourselves, to heal and to be whole. And by whole, I mean, working to get ourselves mentally, emotionally and physically well after the PE.
I know Im reading between the lines of your post when I say this, but you seem so overwhelmed. It must be so hard to be going through this as a single parent with little ones to take care of. Im sorry youre suffering, both physically and emotionally. You mention depression and anxiety. Counseling is a seriously cathartic experience after a PE. Have you considered it?
After the 1st knee surgery I had I was up and moving within hours after the surgery. Then it was my fault that I rushed things and injured my knee again causing me to need another surgery. After the 2nd surgery I was feeling sorry for myself and frustrated so I layed around in bed for nearly a week. IF I had know what blood clots where and that there was a risk of them after both of my surgeries, I wouldn't have just layed around after surgery. I would've been up and moving around as much as I could've to prevent clots. But no one told me ANYTHING after my surgery about blood clots, hell I didn't even know what they were until I was diagnosed with them.
So yeah, I am fed up too because I feel like after the 2nd knee surgery and 4 months of recovery I should be back to the old me and doing what I used to do before the surgery but instead here I lay 7 plus months later with the side effects of Coumadin. I am constantly tired, my hair has gotten much thinner, I have no appetite at all anymore, Vomit at least twice a week, I'm beyond depressed, the chest pains still come and go....I just want my life back but thanks to not being warned about blood clots after surgery, I continue to deal with this.
I have an amazing 9 year old horse just feet outside my bedroom window and I can't even ride him, I can't even mess with him when the heat it too bad because I can't breathe out there. And I couldn't even hold a job down and lost it after two months......
Ok sorry for the rant there. I totally get where you're coming from and if you ever want to chat I am here. HUGS, you're not alone.