One month post diagnosis of PE

Hi Sue. Really feel for you. 😪 Every one is different but I as diagnosed just over a year ago. Only 90% back to normality now. Please just listen to your body. Just little steps to start with. If you get tired rest. I used to have a few good days and think. wow then do a bit too much and end up feeling rough for a week. Some people on here have recovered much quicker. I had multiple bilateral pe with ventricular strain. Not much help really but hang in there. Anxiety is still a problem for me . You can't tell if the clots have dispersed. I am on Apixaban for life. Good luck. This forum is a huge help. 😍💐

Sue,

I am so sorry to hear of where you find yourself. You sound stressed and that isn't what you need. As Lizzie says - we are all different, but after a month, I doubt I could walk across the house, let alone go back to work! I wonder if sometimes people think you're ok, because they can't see the damage.

I am just over 2 years in and am still not 100%. Maybe not comparable, as I had a lot of large clots, but it is a long recovery. I needed a lot of support from my family and am eternally grateful to my son, who walked my dogs every day for months.  

My improvements came in fits and starts - nothing for weeks, then a big jump.  Exercise has always helped for me, but nothing too strenuous. A little every day.  Keep warm (very important) and try not to get stressed (that'll be easy then.....).

Thinking about it doesn't help, but it's hard not to when you chest aches or burns. If it's like that, I grab a book (to read, although biting it may help. Also useful as ammunition if everyone is ignoring you).

If you go back to work anytime soon (i.e. this year), you need to warn everyone you may not be able to do full days. You might be ok, but best let them know.

As far as I know, there is no aftercare plan for PEs.  You are on your own (apart from us warfarin junkies). I wonder if it falls between too many disciplines (heart, pulmonary, vascular etc.), so no-one has taken ownership...dunno.

Anyway, the short answer is that it will get better, it's not quick, but you are in good company and we know how you feel......(I almost shed a tear when I first read your post).

All the best.

Peter

Hi sue,

?I am coming into the 8th month of being diagnosed with PE, I will admit that I do often worry about it especially when I get my chest pain, I'm like is this my angina or the PE talking, it has taken me all this time and I'm still not right, I did make progress there for awhile and thought good it's finally moving on, I don't let panic come into it, I suffered panic/anxiety for 26+ years so I know what it's like, however I can quickly disperse a panic attack with what I have been taught by therapists, I just say to myself, look, I just don't have time for a panic attack , I know it's easy to say but it does take a lot of practise.

?Last week my calf muscle started aching and puffed up again, it didn't hurt to touch or put weight on, it also had the hot feeling inside, sometimes it would be hot to touch but not all the time, I just brushed it off as part of the recovery process as doctors had told me sometimes you will get the symptoms for 6-12 months and possibly up to 2 years. I had a collapse last week, I was sitting watching TV in the forward position on the couch, I had sudden chest pain, I remember that I gasped and then it was good night Irene, I had passed out, I'm guessing 20-30 seconds but it could of been longer, I was home by myself, when I came to I was slumped back in the couch and face up looking at the ceiling, I still had chest discomfort so used my GTN spray, that relieved it. Several hours later chest pain and breathlessness returned so I called for an ambulance. Because I had a collapse, chest pain, dizzy and breathless doctors were concerned about a reoccurrence of a PE, Had my troponins done and another contrast CT scan was done on lungs, good news was there was nothing to report as in a new PE , however they are still a bit concerned so doctor had requested an ultrasound on my lower left leg this afternoon, just to see if that shows anything out of place. Troponins were up past my normal range but still in the negative range so all good in that department as well, just waiting on a heart echo now. I haven't had any more pass outs but leg is still puffy, feelings of heat in leg, breathless, dizzy and get chest pain every now and then. I'm not sure what's going on and I don't think the doctors do either.

Listen to your body, don't over do things, I'm sure you have heard all of this before start off in small steps for walking and exercise, they tell me it's very important that you keep your legs moving and in turn slowly get your lung(s) back into shape. 

I had a PE on August 31st. DVT with several surgeries to remove the clot. I did not go back to work until October  12th.   It was only two days a week then. I am now back at the gym 3 days a week doing the treadmill but still get very tired and short of breath throughout the day. I’m thinking it will take a long time to feel normal again. I feel your pain. I have never been sick and this is very frustrating. Hang in there it will get better.