Hi

I think it's often anticlimactic after you have a PE because really it is just kind of a slow recovery and not much else.

Did they run any blood tests when you first were diagnosed, to see if you have a genetic predisposition to blood clotting? I had two clotting episodes with no direct cause. I do have an increased risk due to having an autoimmune disease. Sometimes there is no known reason. It just happens, sort of a perfect storm of things going on in your body and it just happens.

A specialist really isn't going to be able to do much in terms of recovery. Did you get any direction to follow up with your primary care doctor or how long they will keep you on anticoagulants?

Have you not exercised due to pain, fatigue or fear or just feeling out of breath? Shortness of breath and some degree of discomfort isn't unusual for the first few months after recovery. If you've not done much activity since, it may be time to start up again, just really slowly, going for short walks or bike rides and maybe working your way to longer sessions. Did your doctor tell you it was ok to be active? You can lose a tremendous amount of conditioning in a short time while in the hospital and during recovery.

Hi RMB, thank you so much for replying

Very anti climatic, slow recovery and then not much from the specialist which has kind of left me feeling in limbo

When I was first diagnosed the doctors said that they'll need to run some tests at a later date to try and figure out the cause but, because of covid I was on a huge waiting list and only had the phone call last week with no real answers or talks of further tests.
Like you said I just feel like I could potentially have a blood condition and coming off of the tablets scares me as I'm worried it could happen again but I'm hoping it was just a fluke

They said I'll stay on anti coagulants until my pain/symptoms have gone but its been 8 months and I'm still feeling something in that area, along with the back pain. Did you experience symptoms for this long? A lot of stories I read only talk about a few months

In terms of exercise I've been going for walks and trying to get back into work but I've just been told by my doctor and the specialist to 'not to exert myself' especially as I can still feel some discomfort in my lung.
Again, I just feel frustrated that it's been 8 months, i was in great fitness before and I don't smoke or drink but maybe my body just needs a little longer than others

Hi I had more chest and back pain during the recovery than I did while in the hospital. The worst of it was during the first three months. It got a lot better by six months. Every once in a while I’d get a sharp pain on
and off after that but by the six month mark I felt pretty good, not a 100% but markedly better than the first three months. My doctor who treated in the hospital said I should start activity right away, but very slowly at first. I started with just walking in my yard to and from the garage. That was all I could do. I did that a few times a day and then slowly walked down our street. Then around the block, and so on until I gained strength and stamina. I think by exerting yourself they mean don’t over do it, listen to your body, etc. They may plan to do your blood work while you are off medication. Not sure but they sometimes do that in the US and I’m assuming you are not so the protocol may be different for treatment and testing.

Do you have a follow up visit in the future visit with this specialist or your primary doctor?

Congrats on recovering your post from the great trash heap :) Yeah I had some pain and discomfort across the front of my chest that slowly faded away over the years. I do still get some chest pain on exertion and they don't know what causes it. I found recovery physiotherapy very helpful at first for day to day life. Then I did a two month pulmonary rehabilitation program that was awesome. It was an hour of exercise and an hour of information 3x a week for two months and it helped a ton especially the tips on how to deal with the diminished oxygen capacity day to day.

Re testing for causes, my hematologist advised against it because 1) it wouldn't change the treatment, 2) if they did find something it would make it impossible to get life insurance etc, and 3) most of the genetic problems are one-off mutations unique to one family so don't really tell you anything useful even if they do figure out what it is. I'm sorry that there isn't really anything more useful than to tell you than to pray to the gods but I think you'll find that the fear and immediacy recede over time.

I’m so glad I found this. I’m losing my mind with this too. I was diagnosed with PE in the lower left lung as a result of COVID-19. Had sharp pains and was placed on thinners in the hospital and released two days later. I no longer had the sharp pains but a week or so later it turned into a dull burning ache that would bounce between the lung and back. I feel fine other than the constant nagging that from time to time subsides. I curious too hear if anyone has had similar issues. Doctors just tell me it can take time to get back to 100% and pain and aching is normal. Then other places say it can take weeks and I’m 3-4 months into this and annoyed.

I'm 6 years in and still get some pain. :) COVID is terrible for clots! One published research I found reported that two thirds of PE patients are back to normal after two years so yes you may have symptoms for quite a while. The good news is that the symptoms will slowly recede until they aren't as bothersome.