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.
Hi everyone, my name is Kate and im 28 years old. One month ago i collapsed after having cramping in my leg for 3 days that i thought was due to a tough day at work since i have a very physically demanding job. I was taken to the hospital and they found a saddle pulmonary embolism, right heart strain, and a dvt behind my left knee most likely due to my birth control pill. Like many of you i spent a total of 11 days in the hospital between the icu and the regular floor. i was discharged on coumadin. never really was therapeutic (1.7). Immediately leaving the hospital i began the million doctors appointments with my PCP, hematologist, cardiologist etc. My hematologist decided to stop my coumadin and put me on lovenox 130mgx1 for 14 days so i could get a thrombophelia panel done asap and then we could decide if i wanted eliquis or coumadin. He wants me to take it for atleast a year due to the size of the saddle embolus. During this past week, my cardiologist sent me for a repeat echo and ultrasound to see if my heart was healing in the right direction and if the clot in my leg had resolved. Instead of hearing good news i was told i had a new smaller clot in my left calf and was readmitted to the hospital. Now im on lovenox 130mg x2 until tomorrow when i meet with my hematologist to go over my long term blood thinner options. Before this second clot was found i was on board to try the eliquis because my hematologist seems to really prefer it. The doctors in the hospital (all internists) said they would leave the eliquis decision up to the hematologist because they did not like putting patients with my weight on it because they cant guarantee its as effective because none of the studies were done on overweight patients. (im 5'11, 260lbs). The hematologist says no way, thats crazy, you're barely over the standard weight threshold and i have no problem with you on it. Then a second hematologist who saw me in the hospital said the very same thing to me (doesnt put overweight patients on it) but said the decision is ultimately up to me and my personal hematologist. Now i dont know what to do. Ive been battling severe anxiety when this all happened to me a month ago. Im definitely traumatized and feel like whatever decision i make is putting my life on the line. This second clot while on lovenox has also sent me over the edge because whatever security blanket the blood thinners were giving me was taken away.
So are any of you higher on the weight scale did well on eliquis?
How long did on average does it take for clots to dissolve if they do dissolve?
Is it normal to be terrified to walk around? Did any of you take anti anxiety meds very early after diagnosis of pe/dvt?
In your first month after pe did you have all sorts of wierd sensations? palpitation, fluttering feeling in both legs?
I'm 27 and suffered bilateral pulmonary embolisms in September of last year with birth control (Nuvaring) my only risk factor.
I'm 6'0 and 180 lb and am currently taking Eliquis, but I started it around 195 lb. I'm doing fine with it.
I don't think there is an average time for clots to dissolve. I'll never really know when my clots are gone (from my lungs) because they won't perform another CT scan (and I'm fine with that).
I have had a lot of anxiety since this happened, but I haven't taken any meds. I don't think that's a terrible idea. A lot of us face anxiety with this.
I had a lot of weird twitches in my calf for a few months after PE. It really bothered me because I didn't know what was causing it! I knew I was really low risk for developing a clot while on Xarelto (at the time), and I was not on birth control anymore, but it still bothered me. They didn't find any clots in my legs at the hospital, and they couldn't determine the origin of my clots (but they said likely the legs). Even now, typing this, I feel a weird sensation in my leg and am beginning to overthink it! I've also paid much more attention to my breathing and sensations in my chest recently, and I think that is part of the healing process.
Good luck with everything. Keep us updated!
Many many patients have a lot of anxiety. It's hard not to when you experience such a major event with difficult to distinguish symptoms. A lot of people have found therapy helps.
Weird symptoms are standard. Return visits to the ER are common because you just can't tell if you are having a symptom of a new event or just symptoms of recovering. The good news is that they will lessen over time as you recover.
Hang in there kat120.
You guys are all correct about the anxiety though. It's kicking my butt on top of all the physical things we deal with during recovery. It's affecting my entire day and all my decisions. The doctors have their hands full I know but it is crazy that nobody addresses our mental health. The only person who is concerned about any depression or anxiety has been the RN caseworker I was assigned by my insurance. She's been wonderful and I'm going to accept the therapy she's been telling me about cuz I can't recover and deal with this anxiety at the same time. She's the only one who has said I need to accept that my entire life changed that day I collapsed and it's not easy to accept. I literally think I'm 2 seconds away from death all day every day.
And god knows I have the most fantastic hematologist a girl could ever ask for. Seriously the best. I just have to have faith.
I also found that in the year after my diagnosis, as soon as I could do traveling of any kind, I made sure I spent time with the people who were important to me. I don't have a bucket list, per se, but I realized how long it had been since I had seen certain family members or friends, so we went to see them. Or invited them over. I'm also lucky in that my husband has been a huge help; coming to office visits if I want, picking things up from the store when I was too exhausted to do so myself. He even turns down the bed and pulls the shades down if he thinks I need a nap!
You will get through this. Turn your mind around and start thinking like Pollyanna. You are lucky. There's a reason why you got the diagnosis and treatment you have been getting. This could have gone under the radar but it didn't. You have a great chance at living your life!
It takes a long time to get over feeling anxious all the time after a life threatening event. To be honest, I have never gotten over it completely, but am calmer now. I think it is a good idea to see a therapist- medical doctors don't get the emotional impact of PE. Basically, we can develop something like PTSD. I remember talking to my doctor while lying on my gurney in the ER, and saying, 'since I'm here now receiving treatment, I'll be okay, right?', and having him reply 'well, let's just see what happens in the next 12 hours'. That's pretty damn stressful!
I had the opportunity to speak to someone I know who is an ER doctor recently, and I asked him if he ever sees anyone re-clot while on blood thinners, and he said rarely, that it was usually either on someone whose body had adapted to coumadin or who wasn't taking their meds properly. Believe me, I have never missed a dose!
It is also normal to feel weird physical sensations for a while after a clot. I had a lot of little 'satellite lesions' throughout my lungs when I had my PE, and I would frequently have sudden sharp pains in my chest. I think this may have been vessels reopening as the clots shrink (clots don't really dissolve, they are just remodeled by the body). This lasted for a few months.
All in all, this is an event that will take time to recover from, both physically and mentally. Try to be patient, although I know it's hard. Take your meds religiously, whatever they are. Also, stay hydrated! This helps keep your blood thin.