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.
Sorry in advance for the long post-I have been reading for 4 months and just now have the courage to write:
33 yr old female-Chicago
In my 33 years of life, the only major disaster that I have ever faced was the death of my 19 year old catNothing prepared me for what came next...
December 23rd, 2012: Stage III Gastroc tear in right calf 4 hours before flight to Germany for Christmas. Severe pains. First time I ever felt that feeling of pain rushing to my leg when standing up. No thought of every having a clot, to this day will never know if I had one.
August 1st, 2012: Meniscus surgery, same leg.
August 5th, 2012: Pain in calf when standing takes me to ER for ultrasound per docs advice. Positive for DVT below the knee, sent home with aspirin and ultrasound in one weeks time.
August 12th, 2012: Doppler shows dvt growth to behind knee and admitted to hospital for four days. Heparin drip proceeded by Xarelto 15 mil-3 weeks/ 20 mil. 6 months. Positive CT scan shows moderate PE in right lung-no symptoms ever felt.
Early September: Clot behind the knee appears to have dissolved, left with calf DVT.
Mid-September- Mother in law narrowly escapes death from aortic aneurism-survives.
October 5th: The worst day of my life. My dad is diagnosed with cancer and has taken his legs. I see my hematologist on the same floor as my dad-She is sad at the news that I give.
November 20th: Dad starts chemo. I see my hematologist on his floor again, in a different hospital. She tells me he will get better and will go on to live his life.
December 8th: My dad dies from multiple myeloma cancer, 2 months after diagnosis. Age 64. Now the worst day of my life.
December 23rd: 4 months hematologist check-in.
I cry as I tell my hematologist/oncologist that my dad died. All of my worries about my DVT have seemingly disappeared for the moment. I don't care about myself. She is saddened for me.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I am due to come off of Xarelto in mid-February. For now, my anxiety is low though I know that it will return with a vengeance since I am usually a super paranoid person anyway. So far Xarelto has given NO problems. I make sure to schedule my Dopplers with the same tech every time and he now knows me. He is super about checking my entire leg and talking to me about what he sees while doing so which I appreciate (I fully understand that it still needs to be transcribed by someone else).
My dad's death and my mother-in-law's scare has put a lot of perspective on my own medical issue and puts things WAY into perspective. Even though I feel that I am join got die tomorrow from a random "plucking" from the species, nothing is worse than what I just experienced with my dad. Nothing.
My clot is mild. I guess I am lucky. The only time that I felt pain was when first standing up after laying down or sitting and feeling the "rush" of blood to my leg that was pain- some describe it as burning. This completely went away after about one month after my surgery. I still do have "ghost pains" which are not really pains, more like annoyances-maybe a bit leg heavy, some discomfort after working out (I always wear a sleeve). I meant to have started working out more after my diagnosis, but my dad's health distracted me from taking care of myself. I will never regret that time spent with him instead of myself either.
For now, I hope that my leg discomforts are ghost pains and is not still the clot, but only time will tell. I have a bad feeling that I had a clot after my trip to Berlin and my leg injury and it "hardened", never to dissolve. We will see in one month.
I wear stockings every day 30-40mg knee highs. My right legs are now always in constant motion-concientiously. I drink 300-600 ounces of water per day, no drinking, no more diet soda. I still eat like I used to. The thought of getting pregnant is now put on the back burner as I know the risks of recurrence are higher. Since my family and I tend to be in the 1% of EVERYTHING, I know that I will probably have a reclot no matter what. When I go off of Xarelto, I am planning on starting a regimen of NATTOKINASE supplements. Homeopathic I know, but desperate for a solution outside of medication. I won't stop taking it until I clot again. Anyway...If Serena Williams can come back and win championship titles after this crap.SO CAN I :)
????????????????????????????????????????????????????
Here are my burning questions that maybe some of you may have some insight or opinion. All responses are welcome. Please excuse any that you think are asinine. Over time, the paranoia makes me dream up crazy crap.
1) Do you think that when sitting in a plane, that simply constantly bouncing my leg up and down on the ball of my foot is enough to get the blood moving in my legs. It was a habit anyway and caffeine helps :)
2) Why is there seemingly no fear at night to get a clot when lying in bed? Is it because my legs are straight? Sometimes, I bring my knee up to my waist while laying on my stomach and lay in a "4" position. Should I not do that?
3) Is it terrible if I take my Xarelto one hour later/earlier than I should? I always take it with food anyway.
4) What do you think is the best food to take with Xarelto to make sure that it processes it well and sticks into my body?
5) Should I get a filter implanted to prevent another PE?
6) When I was about 11 I had come into contact with TB and took medication for a year. I am wondering if scarring from the TB in my chest CT scan might have been confused with PE. I don't know enough about what these things look like on film to know if they differ.
33 yr old female-Chicago
In my 33 years of life, the only major disaster that I have ever faced was the death of my 19 year old catNothing prepared me for what came next...
December 23rd, 2012: Stage III Gastroc tear in right calf 4 hours before flight to Germany for Christmas. Severe pains. First time I ever felt that feeling of pain rushing to my leg when standing up. No thought of every having a clot, to this day will never know if I had one.
August 1st, 2012: Meniscus surgery, same leg.
August 5th, 2012: Pain in calf when standing takes me to ER for ultrasound per docs advice. Positive for DVT below the knee, sent home with aspirin and ultrasound in one weeks time.
August 12th, 2012: Doppler shows dvt growth to behind knee and admitted to hospital for four days. Heparin drip proceeded by Xarelto 15 mil-3 weeks/ 20 mil. 6 months. Positive CT scan shows moderate PE in right lung-no symptoms ever felt.
Early September: Clot behind the knee appears to have dissolved, left with calf DVT.
Mid-September- Mother in law narrowly escapes death from aortic aneurism-survives.
October 5th: The worst day of my life. My dad is diagnosed with cancer and has taken his legs. I see my hematologist on the same floor as my dad-She is sad at the news that I give.
November 20th: Dad starts chemo. I see my hematologist on his floor again, in a different hospital. She tells me he will get better and will go on to live his life.
December 8th: My dad dies from multiple myeloma cancer, 2 months after diagnosis. Age 64. Now the worst day of my life.
December 23rd: 4 months hematologist check-in.
I cry as I tell my hematologist/oncologist that my dad died. All of my worries about my DVT have seemingly disappeared for the moment. I don't care about myself. She is saddened for me.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I am due to come off of Xarelto in mid-February. For now, my anxiety is low though I know that it will return with a vengeance since I am usually a super paranoid person anyway. So far Xarelto has given NO problems. I make sure to schedule my Dopplers with the same tech every time and he now knows me. He is super about checking my entire leg and talking to me about what he sees while doing so which I appreciate (I fully understand that it still needs to be transcribed by someone else).
My dad's death and my mother-in-law's scare has put a lot of perspective on my own medical issue and puts things WAY into perspective. Even though I feel that I am join got die tomorrow from a random "plucking" from the species, nothing is worse than what I just experienced with my dad. Nothing.
My clot is mild. I guess I am lucky. The only time that I felt pain was when first standing up after laying down or sitting and feeling the "rush" of blood to my leg that was pain- some describe it as burning. This completely went away after about one month after my surgery. I still do have "ghost pains" which are not really pains, more like annoyances-maybe a bit leg heavy, some discomfort after working out (I always wear a sleeve). I meant to have started working out more after my diagnosis, but my dad's health distracted me from taking care of myself. I will never regret that time spent with him instead of myself either.
For now, I hope that my leg discomforts are ghost pains and is not still the clot, but only time will tell. I have a bad feeling that I had a clot after my trip to Berlin and my leg injury and it "hardened", never to dissolve. We will see in one month.
I wear stockings every day 30-40mg knee highs. My right legs are now always in constant motion-concientiously. I drink 300-600 ounces of water per day, no drinking, no more diet soda. I still eat like I used to. The thought of getting pregnant is now put on the back burner as I know the risks of recurrence are higher. Since my family and I tend to be in the 1% of EVERYTHING, I know that I will probably have a reclot no matter what. When I go off of Xarelto, I am planning on starting a regimen of NATTOKINASE supplements. Homeopathic I know, but desperate for a solution outside of medication. I won't stop taking it until I clot again. Anyway...If Serena Williams can come back and win championship titles after this crap.SO CAN I :)
????????????????????????????????????????????????????
Here are my burning questions that maybe some of you may have some insight or opinion. All responses are welcome. Please excuse any that you think are asinine. Over time, the paranoia makes me dream up crazy crap.
1) Do you think that when sitting in a plane, that simply constantly bouncing my leg up and down on the ball of my foot is enough to get the blood moving in my legs. It was a habit anyway and caffeine helps :)
2) Why is there seemingly no fear at night to get a clot when lying in bed? Is it because my legs are straight? Sometimes, I bring my knee up to my waist while laying on my stomach and lay in a "4" position. Should I not do that?
3) Is it terrible if I take my Xarelto one hour later/earlier than I should? I always take it with food anyway.
4) What do you think is the best food to take with Xarelto to make sure that it processes it well and sticks into my body?
5) Should I get a filter implanted to prevent another PE?
6) When I was about 11 I had come into contact with TB and took medication for a year. I am wondering if scarring from the TB in my chest CT scan might have been confused with PE. I don't know enough about what these things look like on film to know if they differ.
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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.
I too had a positive TB test at about the same age and took the meds for a year and I have had many tests since and no one has mentioned seeing that so my guess is they did not confuse the 2.
I am not a fan of the filters and that will be a last resort for me.
One hour difference should not make a difference as it takes 24/48 hours to get out of your system.
This year was bad for me too so I feel your pain..
I did want to address your question #2 about clotting while sleeping. I think they don't get super worried about it because, first, your whole body is pretty horizontal. The blood flow isn't fighting gravity to keep moving and I imagine you'd have less instances of blood being able to pool when you're horizontal as opposed to--for example--sitting in an airplane seat for many hours.
Also, people aren't really still when they sleep. We do tend to move around in our sleep. I can think of very few times when I've got to sleep and woken up in exactly the same position.
I sleep on my side in the four position as well. I don't think its an issue unless you're wearing something binding that could impede blood flow. (There was someone on these boards who had clotted after sleeping in very tight jeans.) If you're really concerned, you can sleep with your leg(s) elevated on a pillow, which can also help with pain/swelling from DVTs.
As for the filter, I don't have one and don't want one, really. Ideally, I'd prefer to prevent clots forming at all (hence being a lifer on warfarin) than just try to keep them from getting to my lungs once they do form....
Here's hoping that 2014 is a better year for you!
My condolences for your father. You had a painful year but God
doesn't give you more than you can handle. In one year I was diagnosed with sclerotia, moved to a new state, changed jobs and was diagnosed with OE -- my 2nd ever occurrence of blood clots.
I wasn't a smoker, didn't take BC pills and hadn't been on a long
drive or flight.
My advice you you is wear your compression socks everyday, take Xarelto with food and water as much as you can, try not to eat toouch fatty cholesterol ridden food -- which can cause clots , and get on garlic and/ or ginger and cayenne pills as soon as your taken off blood thinners. Wear compression socks while flying and get up to walk
around for long flights.
I was taking garlic pills each day after they took me off Coumadin
For the first blood clot,. I never should've stoped because it happened again to me . Do everything to thin your blood naturally and always drink water.
FYI caffeine dehydrates the body. Dehydration makes it easier
for clots to form. Wishing you well.
God bless.
God bless
Not saying go ahead and eat like crap. Just putting it out there so folks don't start wondering why their docs never told them that eating deep fried cheese ( a staple here in Wisconsin) may have caused their PE.
When you had the DVT my personal opinion is that they should have prescribed something more than an aspirin. While it does thin the blood my thought (bear in mind I am not a medical person) it would not thin it enough.
As far as restrictive clothing while sleeping, I've been sleeping nude for 30+ years.
2013 was the worst. Here's to a better year ahead.