Are Pains Post-PE Normal Recovery or a New Clot?

[northrancher]

I'm a 66 year old healthy/active woman/non-smoker & had an "unprovoked" PE in rt lung 3 months ago after the flu/immobilization. I'm taking 20mg Xarelto. My hematologist ordered blood tests for clotting disorders, autoimmune diseases, etc. and all were negative. Originally, I tested positive for lupus anticoagulant, but my doctor ruled out APS & my follow-up CT scan (2 wks after clot) show clots were gone & no scar tissue. My mother had DVTs from varicose veins.

During PE recovery, I've felt great, even though I did have bearable achiness on my right side and headaches. I made sure I drank a lot of water and was able to get back to walking/hiking and taking my exercise class. My energy level was high. A few weeks ago, I started to feel extremely weak & fatigued and had shoulder blade pain. I went to ER & EKG,xrays & vitals all checked out, but blood tests showed a potassium level of 3. My primary doc thought it might be all the water I'm drinking & prescribed potassium pills. He said the shoulder blade pain was muscular. Days later, after feeling a charley horse pain in my right leg on & off all day, I began getting a squeezing pain along my flank side, but there was no pain when I took a deep breath. I took a Tylenol & went to my first golf lesson (just putting) and afterwards, the squeezing flank pain intensified. Unbearably. Today, (2 days later) in addition to the flank pain, I have sharp pains between my shoulder blades and chest pains. My energy level has dropped, I don't feel well and now I'm fearing I've thrown a new clot, although my doctor says my chance of that is "zero." (I never miss taking Xarelto same time everyday.) Today, I've taken Tylenol & used a heating pad, but I don't feel back to "normal" yet. I don't know what to think.

Are these pains that suddenly flared up after I'd been feeling great normal? Am I throwing new clots? Am I on the wrong blood thinner? Is the low potassium a Xarelto side effect or caused by drinking too much water?

Thanks, in advance, for any guidance you can give me or shared experiences.

[ayl291]

Was a nurse... now professional patient lol

[ayl291]

Have they done a spect v/q to rule out small clots?

Im assuming ddimers have come back clear?

[northrancher]

No, they didn't do either test. Is it too late to go today and get those tests done?

[ayl291]

No,  you can go right now.  Demand both tests.

Make it clear that small clots and cteph are more readily visible on spect v/q vs. Cta.

And pull up studies that cteph and small clots are better seen via vq.  So they dont argue with you.
https://www.ncbi.nlm.nih.gov/m/pubmed/17475953/

[northrancher]

Thank you very much! Will do. I'd prefer to avoid another CT scan anyway--I've had 2 in 3 months.

[ayl291]

Yeah vq has WAY LESS RADIATION!!  and ddimer is just a blood test.  Good luck!

[northrancher]

Thanks, again! Are you in healthcare? You are so knowledgeable. Appreciate the good advice.