Hi people, it's been a few weeks since I first wrote in & had some friendly answers & advice. Since then I have been e.mailing the PALS team at my hospital to try & get some answers. As I said previously my consultant had gone on leave but had written to Professor Wilson at Royal Brompton Hosp. So I waited & have been eating better after my daughter stayed for a few days & had eye test, which showed no signs of Aspergillosis in them & no need for prescription either. So that's good news, although the eye guy did say it does not always affect eyes.
Last week I had e.mail From lady at PALS team to ask if I had heard from Prof Wilson or my consultant, since he came back on 18 Aug. I replied to say Not heard from them & asked why my consultant had written to Prof Wilson, was it for referral or advice? She relpled to say it was for advice? She said she would contact my consultants office & get back to me. I had not heard anymore since last week, so I mailed her again yesterday. Her reply was to say she had spoken to Prof Wilsons secretary today & they are sending me an appointment because Prof Wilson wants to see me.! So although I will be seeing a top lung specialist & get some answers at last, it has also worried me as l was thinking my consultant had maybe got it wrong & that's why he asked Prof Wilson for advice & I would eventually get to see my consultant & be told this!
So now I wait again & still confused as to why my consultant has kept me waiting so long without treatment & no more explanation about this disease I may have?
I am not happy about all this & feel it's because of being mis diagnosed in Feb 2013 by incompetent junior registrar & then trying to get appt to see my consultant for over a year since then, so did not see him til March this year & would I have got so bad if had been seen a lot sooner?
Another Rant over, hope you are all getting better treatment than this!