Hi, I suffered with unprovoked multiple bilateral PE in October 2014, was put on walfarin lifelong though switched over to rivaroxaban about 10 months ago for ease of management. I still find that I'm pretty much constantly short of breath and often feel fatigued. I'm beginning to lose confidence in my consultant and the NHS in general. I've had a couple of mri, cat and vq scans. The most recent vq scan did not show any blood clots but did indicate "ventilation issues" I pressed the consultant for more information on this but she said she had no further information at that point???
At my next appointment she still could not shed any light on the "ventilation issues" but would organise a HD cat scan to see if this showed up anything? She then said that if this was clear she was then at a dead end as she had investigated everything available to her and that the next cause of action would be to refer me to a specialist in London and also went on to say there were actually clinics in London for patients that continue to suffer with breathlessness after pulmonary embolism.
This all seems very vague and a bit hit and miss, is anybody else in the same situation, aware of these clinics, has continued breathlessness or could offer any advice? I feel very much as if I've just been left in the dark and it's a very lonely place.
I'm a 46 yr old male and prior to the PE was in relatively good health.
Thanks in advance.