First of all I would like to say what a fantastic site. I have found all comments extremely helpful and it puts in to perspective how serious this disease can be
I was released from hospital 3 weeks ago with pneumonia, blood in the lungs and "possible vasculitis" I was in for a total of 6 days, 3 of which were in quarantine as they thought I may of had TB. Whilst in hospital in underwent many tests ,bronchoscopy, CT scans Chest x-rays ultrasounds e.t.c. The consultants throughout my stay were convinced that I showed all the signs of vasculitis and kept on mentioning this to me but without much explanation, they mentioned it that often I was convinced that it was an extremely common disease and one which would be easily sorted. After 6 days in hospital and several blood transfusions I finally started to feel on the mend so I asked the doctors what the plan was as I felt a lot better than had done on admission (fully expecting to go home). He then went into a lot of detail on how I was going to be in for the next 1-2 weeks whilst they treated me with steroids for the vasculitis, but no joke of a lie another consultant whilst the other consultant was stood there popped her head around the curtain and said do you want to go home?? At this stage I was totally confused but being a 30 year old male jumped at the chance to get out of hospital. It has now been 4 weeks since I have left hospital (I had antibiotics for the first week but no medication since). On release they said I may have to come back for kidney Biopsy. This was confirmed after 2 weeks and I'm awaiting the date for this. Since then I have had 3 more visits to my GP and 2 visits to hospital my symptoms are getting as bad as they were when I first went in.
Coughing up blood
Flu like symptoms
( I did visit the GP with all these symptoms 3 times spanning 3 months before being admitted).
After a lot of research over the past couple of days I'm now getting the distinct feeling that the people treating me don't fully understand this condition. ( I certainly don't)
I'm looking to get as much information as possible from people on what questions should I be asking? what tests should I be pushing for? should I look at going to another hospital for treatment ( currently under the care of Bradford teaching hospital) any help would be greatly appreciated
It is extremely frustrating as one minute I feel ok and the next I cannot get out of bed and its really starting to affect all aspects of my life especially family life.