Hi, I am new to this site, so may be long post. I have Bronchiectasis (8yrs) & have had problems with appointments since new hospital opened 3yrs ago, plus I had to cancel 2 appts in 2012 because my partner diagnosed with cancer, so he came first, but sadly died in Sept 2012. I had to get my GP to get me back with my consultant & got appt for Feb 2013, saw Junior Dr who I told I had been unwell for few wks & knew I had infection. She mis diagnosed me so I went to my GP next day & she confirmed chest infection & gave me antibiotics. I was very ill & never quite recovered from that. For several months after this I did not get follow up appt with my consultant, my GP tried a few times & as my breathing was worse than ever before I was worried, I could only walk a few metres & stop to catch my breath, everything such an effort. I finally got appt for March this yr (2014) over a year since last one, so I ask my GP to do bloods & order x.ray prior to my appt. Lucky I did because I saw my consultant & he said I have another cavity in left lung although not good news it confirmed why I had felt so weak & breathless all time! He seemed concerned & ordered tests (CT Scan, Bronchoscopy, respiratory tests & bloods) & see him in 6 wks. Next appt 24 April, he gave me drug V.Fend (6 wk course) & see me in 8 wks! I have hearing probs, caused by Vancomycin 12 yrs ago (long story) so do not hear everything said & no one to listen for me now, so I was unsure what these V.Fend were for. Pharmacy warned me of side effects.. After taking them for 5 days, with bad side effects my tongue & glands in my throat swelled? I returned drug to Pharmacy at hospital the next day & told I needed to go to A&E to see a Dr as need alternative drug for my problem? I won,t go into the visit to A&E but I came away with no replacement as Dr I saw knew nothing about respiratory problems & said I need to get appt to see my consultant ASAP? Despite my GP & myself trying to get another appt since then (3 months now) still waiting!! I did get a copy of letter sent to my GP several wks after my last appt with my consultant with Diagnosis of Invasive Aspergillosis & as this is very serious & can end my life, I am frightened & despite help from PALS (patient liaison team) I am still waiting for appt to see my consultant & no explanation of what to expect with this disease invading my lungs etc. apart from my own research. (Scary) I did get e.mail from PALS 2wks ago to say ' my consultant now on annual leave til 18 August, but he has written to a Prof Wilson at Royal Brompton Hosp in London' about my diagnosis! I am so worried, is this because my consultant not had much experience with this 'Invasive Aspergillosis' or is he unsure I have it??.. Without help from PALS I would not know any of this! So I am still waiting. Does anyone else know about this life ending disease & what to expect?
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