I had a DVT from pelvis to left foot and PE’s in all 5 lobes of my lungs and almost died a year and a half ago. It took 2 thrombectomies, a blood transfusion, and 9 days in the hospital to get me out of the woods. I suffer from 24/7 ongoing symptoms from it and often worry that they signal a repeat clot even though I’m on blood thinners. Does the worry about a repeat clot ever go away? I think since I ignored some signs until it was so far gone last time, now I’m afraid of not getting every sign checked out.
Short version : had recurring pain but follow-up was negative. I had multiple bilateral PEs on 5/24. My doc suggested a follow-up ct at 4 weeks ( which per some guidelines was too soon to recheck) but this week I had recurrent bilateral chest pain similar to prior episode and so got the follow-up weds. It showed all the clots had resolved! Lungs clear.
Great news!
Awesome!!!! Congrats
Mine was a CVST (brain clot) so every time I have a particularly bad migraine my anxiety about a recurrence goes up. But I can say it has gotten better over time, both my lasting symptoms from the clot/stroke and the anxiety itself. I'm 7 years out so it's been a while and I won't say it never hits me, but far less than the first couple years. And I am not on thinners anymore even, for what it is worth since my clot was provoked by birth control. I did also seek treatment for anxiety (which I had pre-clot, but of course it was exacerbated), and that can be something to look into for you as well.
How long did it take for your CVST to clear? I was diagnosed July last year, had a scan in December with no change in the clot & have my next scan in a few days really hoping it’s resolved so I can come off blood thinners. I know what you mean about the migraines too, I ended up with one pupil permanently larger than the other which is so un nerving 🙁
Mine took a little over a year
Mine was about 4 months I think. I still have slow blood flow in some areas but the actual clot is gone, but I know it varies widely how long it takes or even how much it breaks down. Good luck with your next scan, fingers crossed for good results!
Hi! I had a cvst in 2019 that was also provoked by hormonal birth control.
Can I ask what your lasting symptoms have been? I feel like my memory is just not what it used to be but I can't tell if that's a symptom or just my age (35).
I am also on keppra for the stroke/seizure symptoms I had due to the clot - curious if you were on keppra too? My neurologist recently suggested I come off it but I'm scared.
My lasting deficits are aphasia and small right hand tremor. The lasting aphasia is mild but gets a lot worse when I am tired, sick, or have a migraine. I do feel like my memory is worse, but it was never good so I can't really blame the clot lol.
I was never on keppra. I was discharged on gabapentin but it made me feel really weird in a way similar to some of my CVST symptoms, so I stopped it ASAP (with doctor's ok). I did not have a seizure with my clot though, it was something they were worried about but I got lucky in that regard.
4 years post clot and I’ve been off thinners for 2. Truthfully, I rarely think about it anymore. Not sure if that’s typical.
Yes. It took me years. You’ll get there.
Yes It does but comes up every couple of months.
Anyone else have anxiety when their hematologist lowered their dosage? She lowered it to help lessen my periods. Went from 5mg to 2.5mg and now I'm overanalyzing every leg cramp or swollen leg. Should I go back to 5mg for peace of mind?
Did anyone change their diet after having a blood clot?
I switched to a higher protein, lower carb diet. I didn’t swear anything off, but I do eat more sensibly. I try to avoid processed foods as much as possible and opt for whole single ingredient foods whenever possible. I also eliminated alcohol.
My dvt was provoked by an attempted cardiac ablation so no need.
Inflammation is a precursor of all diseases so you may want to look into anti-inflammatory foods and plant base foods.🙏🏼
Time will dull the worry. You went through more than most people here, so it may take you longer for the fear to subside. Stay active and busy in your life. Thank your blessings that you are here. Talking about your fears from time to time is therapeutic - no need to sweep what happened to you under the rug, but don't dwell on it all the time either.