I’ve been unwell since spring 2011 and finally in May 2012, was diagnosed with a pulmonary embolism. I was given warfarin and although things initially improved slightly, I continued to suffer with shortness of breath, tiredness, feeling unwell, cough, chest pains etc.
After a period of time, things got worse and I’ve had to give up all exercise due to the shortness of breath and have constant cold like symptoms, get pains in my hands and pain around the nerves in my teeth. I was referred to Papworth as it transpired the clot hadn’t dissolved and was to be assessed for surgery to remove it but then Papworth thought that there was inflammation as well and so I was referred for a PET scan. The PET scan showed inflammation of the aorta and main pulmonary artery (as well as tonsils) and they confirmed vasculitis.
I have been referred to a respiratory consultant who is part of the vasculitis team at Addenbrooke’s and my appointment is now two weeks away. It has been quite a long journey getting to this point and I am now anxious over what the treatment is likely to be (from what i've read will be steroids and possibly immunosuppressant therapy) and the side effects and whether my breathing will ever get better. I am 35 and before all of this was very fit, healthy and active! Does anyone have any experience similar to the above and got better or know what I can expect when I go to Addenbrookes? Also, has anyone else had a pulmonary embolism because of this condition as the docs think it may be the cause of mine?