Hello fellow PE sufferrs

in September 2020 I was diagnosed bilateral PE provoked by knee surgery, my symptoms were dizziness, SOB and tachycardia but no chest pain, a CT scan showed the clots.

I was prescribed Xarelto for 6 months and a follow up appointment with a respiratoy consultant. For the follwing 3 months I experienced fatigue and tiredness like I have never experienced before, it was a slog to walk to the end of the road and back without lightheadiness, SOB and a racing heart followed by extreme fatigue, this improved over time and i felt my self improving over the weeks.

During this time I had so many conflicting and confusing opinions from health proffesionals about the recovery phase that I felt quite alone and at times patronised as my symptons and concerns were dismissed. It feels like you are placed on the "PE experince" by the health proffessionals, but they only have the guide book for the acute phase  "diagnosis - 3 months" after which your "PE experince" is over and you can just get on with it.

During the 4th month post diagnosos I felt my recovery had stalled, I developed new and gradually worsening symptoms starting with a sore, bruised feeling in my upper left chest, this is tender to the touch, a tightness to the chest and a dry cough, occasional palpitations and a feeling that it is harder to breathe, occasionally there is a sharp pain when breathing and a cramp like pain in the upper left chest that can radiate into the shoulder.  These symptoms are considerably provoked by over exerting myself or by an accumulation of activity during a busy day.  

I have consulted my GP over this and as a result had a lung function test and a CPET test, (Cardio pulmonary excersice test) the results have shown nothing to be wrong with my heart and lungs.

This is very confusing to me as there is clearly something going on, my GP sought a second opinion and as a result I have just seen another respiratory doctor who agreed to a chest xray, blood tests and a heart monitor. It was made clear to me that he didnt expect to find anything wrong and would not agree to another CT scan to look for scarring or unresolved clots in the lungs. "Im just dotting the i's and crossing the Ts really" he explained. His opinion of my chest pain is that it was probably musculo-skelital and offered no opinion on the cause of my palpatations or other symptoms.

So here I am 10 months post diagnosis, in bed with a sore, tight chest and shoulder , coughing and feeling fatigued and exhausted as i had quite a bust day yesterday.

I really hope part 2 of "The PE experience" - "3 months+ Post recovery" is published soon and distributed to the health services as there are so many PE survivors that could really benefit from it, browsing the many unique experiences of this wonderful discussion group is testament to that. During post PE recovery there is too much looking for and telling us what is not wrong with us and not enough looking for what is.

The most useful and reassuring advice i have taken on board is that the heart and lungs have been through a massive and traumatic even and for a period of time while they heal they simply can not be pushed beyond their compromised limits, their recovery can not be forced or hurried but they will recover, we just have to be patient and listen to the messages (symptoms) they sent us during this time.

Mike

There is so little information about period after the clots have gone and the long term effects on our health