DVT Blood Clot left leg

[MsFortunate]

Hi,

35 yr old female.

I just found out I had DVT, my foot (left) would swell from time to time. Did not think too much about it, I have identical twin boys and do alot of chasing. Dismissed it as too much salt..etc. On the 21st of last month my foot had gotten a bit bigger than anytime before. But what was hurting was my lower back, alot. I had taken some motrin, elevated my leg and turned in early, only to wake to my whole leg super swollen. I got up to use the restroom and my leg just about gave out, I was holding myself up with the walls, so painful to put weight on it for my back and my thigh to my foot. Went to the ER in tears, they did an ultra sound. Severe anemia (HGB-LOW@ 7.7)& Clot from groin to foot. I was transferred to another hospital and stayed for two days discharged. Taking xalreto 2x daily. Not sure whats next. *The day before I went to the ER, I had my leg up, and I swore I could feel some movement with a slight numbness, kinda like something is moving around in my leg from the size of a pea to a marble randomly up and down my leg. Thought I was the star of some creepy sci fi movie

(lol, jk)

ANYONE, now that I have gotten home, feeling super scared about every ache and pain, I worry constantly about the clot breaking off and traveling. Can anyone tell me what I should be aware of, if anyone has had this happen. What are the signs to look for? Everything I have read is so vague. I know the stress is not healthy.

Thank you in advance, I appreciate the time & knowledge.

Best wishes, to all

[Wittycjt]

Welcome, have you been diagnosed with Hughes/APS?

[ladyluck53]

MsFortunate: Sorry to hear about your issues. I have been in a cycle with clots on/off for years. This first ones were "provoked" by being in hospital in bed. Mine was in left leg from ankle to groin. Right leg was a few in different spots. It was quite frightening to hear. I had so much to learn. I was put on Coumadin and prescribed compression stockings after the hospital Heparin drip. I was healing for 6 months. The right leg cleared completely. The left leg cleared 80% and I was left with "chronic or "stable chronic" clots in the top of my femoral and popliteal and another i think in my ankle area. The clots are not considered dangerous once stable. I was take off Coumadin at 6 months. Within 6 weeks I woke to that charlie horse type of pain that does not go away,and could not put pressure at all on my leg to get out of bed; Doc said go to E.C. and there was another clot! this time I was put in Xarelto after hospital heparin. That time I had blood test ran to see if I have a clotting disorder, was negative. That time the clot was "unprovoked" meaning,I was not in bed ,nor inactive. The way it was explained to me was that because the other clot had damaged the return valves in my left leg(only) the blood returned very slowly kind of setting up another clot. I have since then gone off Xarelto for a couple days for a dental procedure and got another clot,same area.

Since then, I get a "bridge" of Enoxaparin sodium shots to inject myself whenever I have to go off for a couple days. So far,so good. The blood thinners do NOT dissolve clots, they act by preventing the clot from getting worse while your body heals. Our bodies reabsorb the clots and the thinners prevent more. There is a really good website I found very usefull

clotconnect.org/

Also I found this special tape to be very helpful and drug free!

amazon.co.uk/KINESIO-TAPE-T...

I can answer many questions about my own experience. Best of luck,Lisa

[Hidden in reply to ladyluck53]

My PE is unprovoke accordingly to the doc but may need to take for lifelong rivoxaban. I don't feel focus with this medication, 3 months on medication. Any advice based on your experience

[ladyluck53 in reply to Hidden]

Please go to clotconnect.org/ and read more about clots. Based on my experience the first was provoked, second was like side effect of first, and the ones after were unprovoked. The best advice I can give is to swim if you can, it is very helpfull to keep things flowing. There were many things like compression stockings, light walking,then swimming that seemingly helped. It really is an educated guess. I have felt the confusion and inability to focus at times, I am not sure if that is from just my "down time" in the intensive care or the medication. I have to take the medicine for life and wear a medic alert bracelet with the name of it on there. I try every day to look at the positives in that I am alive, I am grateful to be here.P.E.'s are frightening and I would read as much as possible on clotconnect.org or other reputable source. Best of luck.Lisa