How are you post PE/DVT?

[Brookiebiceps]

I haven't posted in awhile. I was diagnosed with PE's back in August.. I'm still on Xarelto indefinitely.. just wanted to see how everyone is doing in their recovery. Please share any advice or changes you've made.. stay safe!

[mestala]

I had multiple pe's back in 2012 and was a few minutes away from the old morgue,but the doctors saved me.They told me I might never be the same again...and they were right.Eight years on my breathing capacity has never been the same,and I'm still on blood thinners and always will be by the looks of things.Got to get on with it the best you can.I was 59 when it happened and physically fit..mine happened un-provoked by anything...so it can happen to anyone.

It's still always on your mind that it could happen again....like life,there are no guarantees

Good luck

[motorbike in reply to mestala]

I’m the same. I use to run, now I’m breathless . I’mNearly 70 . I was nearly a goner , but pulled through

[Midnight_Voice]

I had a saddle PE in 2005, and spent 20 minutes clinically dead, but made a full recovery except that I mostly lost my sense of smell. And I am on Warfarin for life; initially they took me off after six months, and I got another DVT soon after, for which they had to bang me full of heparin before it turned into another PE that might well have killed me.

But I lead a pretty normal life again, no concessions to having had the PE and DVT beyond staying on the meds, and the weekly ritual of the INR test on my own Coaguchek, except that (as you can imagine) I would be a menace in the kitchen.

The leg I had the DVT in was a bit strange-feeling for a couple of years, but even that cleared up.

My advice is live as normally as you can, but don’t ever stop the meds. And go bang on the hospital doors if a leg starts hurting again, bypassing any GP who might say it’s just phlebitis!

[Brookiebiceps in reply to Midnight_Voice]

Thank you both for replying.. yes I'm trying to carry on as best as possible. I'm back to work, cooking, cleaning and caring for my husband and 5 kids. I recently started exercising again. I'm glad it does get better over time. Mestala what meds are you on? I'm still learning to except that I will be on them long term.. but one day at a time right? God bless!

[GillyA]

Good to hear from you again. My CVST diagnosis was May/June this year. On warfarin (As APS was also diagnosed). After a pretty awful few months I’m mostly back to normal. I have found that in our Covid world I find it harder to cope with minor health issues, not helped by living in a country where malaria is endemic and hygiene challenging.

Previously I would throw off or ignore minor illness, now I go through a loop of Covid, malaria, food poisoning each time in the knowledge that taking medication is going to be difficult.

But essentially I’m determined I’m not going to allow myself to be defined by my health and that I’m going to carry on as normally as I can.