u/ultimatedogzone

I finally got the all clear to stop taking my eliquis about 4 weeks ago, 3 months after my initial diagnosis. I was wondering if anyone else has experienced shortness of breath this far out from clotting. My blood oxygen levels always come back fine (I keep a pulse oximeter on hand for peace of mind), so it mostly feels like impaired lung capacity? It feels hard at times to take deep breaths and i frequently feel the need to do so. I’m trying to get more physically active again but its difficult with my joint issues. It also feels worse when I’m laying on my back and today I have a pretty bad headache and some back pain (??). I’m planning on getting appointments with specialists, but the wait times around where I live are pretty rough. I also get occasional twinges in my chest from time to time and it spikes my anxiety really bad. I was just wondering if anyone had similar experiences.

its memorial day so i cant get in touch with any of my doctors, but i woke up this morning and realized that my pill planner still has its night time dose for sunday and saturday night. i think theres a chance that i could have just taken my saturday morning pill on accident last night (the saturday morning dose is empty), because im pretty sure i refilled my planner after taking my nighttime dose on saturday but my memory is really bad and i cant be certain. i cant get in touch with my gp, and hematology is still a month out, so is there anything i can/should do right now? freaking out a little bit

edit: for what its worth i had a ct scan 2 weeks ago and found the clots in my chest were gone.

sorry for posting again so soon, i just wanted to know if anyone else had a similar experience. ive been on eliquis for about a month now, and i went back to the er a few days ago and found out that the clots in my lungs had cleared up. the next day i experienced worse chest pain than i had ever experienced before, like an extremely sharp pain right in the center of my chest. before that i was doing much better and not really having much pain but now i have a near constant sharp pain in my chest. i just wanted to know if anyone else had an experience like this.

a little over a month ago i had surgery on after tearing my meniscus at work and during recovery i ended up in the hospital for multiple pulmonary embolisms. i was prescribed eliquis and every single day has been pure hell for me. my first er visit they ran a d dimer and it came back undetectable and they just sent me home and i only survived because i came back a second time and got the ct scan. i ended up going back to the er multiple times because i was so scared to the point where i had multiple nurses in the ED recognize me as they were passing by. for the first few weeks every little thing terrified me and i basically couldnt function as a person whatsoever. even just eating food was terrifying to me.

the anxiety was slowly getting better until a the other night when i convinced myself i was having a heart attack. i went back to the er and they ran a ct scan on me again and ran troponin tests and everything looked good, the blood clots had cleared up and i was feeling better until today. around the middle of the day i was talking to some friends and suddenly got an incredibly intense pain in my chest that caused me to double over for a minute. ever since then my chest has continued to hurt and ive just been a complete wreck for the rest of the day laying in bed crying because im so scared. i really dont want to keep wasting my time at the er because its clear theyre starting to get frustrated with seeing me so often. every single day ive been scared im gonna go to sleep and not wake up and at this point (let me make it clear that i very much do not want to die) im thinking if something fatal does happen id rather it be in my sleep.

i bought a pulse oximeter shortly after my diagnosis for peace of mind and my vitals continue to look fine but i cant convince myself that im going to be okay. its been really hard balancing this with the rest of my doctors appointments (physical therapy for both my knee and my developing hypermobility problems, pcp appointments, and trying to get in with a hematologist) on top of feeling scared and alone constantly. my whole life has been completely derailed by this and i dont know what im going to do for work because workers comp took so long to get me into surgery that i got let go from my job (which i wouldnt have been able to return to due to blood thinners and my joints making it unsafe for me to continue working).

i want to get into therapy and get back to life but most days i end up spending half the day in bed because i cant do anything else. i just need to know im going to be okay and that things will get better. sorry for the stream of consciousness i am just struggling harder than i ever have and i think hearing from other people would help.