Deep Vein Thrombosis (DVT) Support Group
Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.
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.
Regarding the pregnancy, I know that for most clotters, you are put on injections throughout the pg, so please don't let this stop you from starting a family!!
Also, research the nattokinase. I have read a lot of negative, some here on this board, I believe.
With travel, you really need to be getting up and moving around, also, per my hema. I would do toe lifts, etc., but also be taking other precautions. For really long flights, I would prob talk to my hema first. I know they will sometimes so xarelto or injections in these cases.
Sorry, not a huge help, but I am sure others will chime in with great advice.
If you are planning a long distance travel, check with your doctor if he would recommend a blood thinner injection or tables before your journey. And you should not bounce your leg rather you need to flex your muscles by ankle pumps. You can browse a few videos online to know the technique. And it is very important to move around every hour or so if you are in the plane. Some might say that ankle pumps suffice but why take a chance when you can walk without any pain?
I did not get your sleeping position but people believe that crossing your legs might hinder your blood circulation while some research suggests otherwise. But better not to cross your legs.
Always try to take the medicine at the same time. This is true not just with the blood thinners but any medicine.
As far as I know Xarelto doesn't have any food restrictions or INR tests. And that is why people prefer it to Coumadin.
Since you had a DVT just once and it seemed to resolve fairly quickly, I think no doctor would recommend an IVC filter.
And I am hearing for the first time about asymptomatic PE. I thought PE always produces symptoms while a DVT may or may not present itself so quickly. Anyway, for a lot of people it gets difficult to take a long breath if they have a PE.
I'm sorry for your loss.
Here's my take on things:
1) I would try to get up especially for a long flight, but that's such a hassle on a plane sometimes. I would try pumping your feet and doing ankle circles too. I would drink a lot of water, which will keep you hydrated and force you to get up and walk to the rest room.
2) I think we move a lot more than we think we do in our sleep and you're not confined to one position. I sleep on my side in a 4 position as well. I wouldn't over think this. It would be different if you were trying to sleep, I don't know, in a trunk of a car, or some other cramped space where you can't stretch or move.
3) An hour is probably not a problem. If you're really concerned, I'd ask your pharmacist. They're a good resource for medication questions, sometimes more so than your doc.
4) It's not going to matter what you eat.
5) As far as a filter, that's best answered by a medical professional. No one here knows your situation or risks.
6) When it's a PE, it's usually pretty obvious on the CT scan. I don't know what "moderate" means in the context of PEs, but it may not have presented symptoms yet because it just recently occurred or it was in a place that didn't affect your breathing yet. But you can always ask your doc to show you your scans and point out the PE, and that way you can see it, if that would give you peace of mind, but it stands to reason if you were treated for a DVT and it was still growing at some point, then it broke off and traveled to your lungs at that time. I'm surprised you were treated for a DVT with aspirin when first diagnosed. That doesn't make medical sense to me, but what do I know.
As far as Nattokinase, I think it's fine to take as a supplement after coming off warfarin. Whether it's truly effective or not I question. The controversy here on this and the PE forum is when people take it instead of warfarin for an existing clot.
Yes, no symptoms for PE, but positive test.
They sent me home with aspirin because they said it is a medical tossup whether to treat distal DVTs, as most do not travel. Got lucky I guess.