It's been a while since my last post & frankly things are no better. After several months of PALS, my hospital Liason team contacting my consultant because I could,nt, after he diagnosed me with Invasive Aspergillosis in April. I did,nt find out until May myself after a delayed letter to my GP (I got sent copy off) although he had given me VFend 6 wks prescription at my last appt, but had reaction to them after 5 days & stopped taking them & returned them to hosp. No appointment with my consultant since then even tho my GP has contacted his office & so did respiratory nurse who tested my breathing in May & said I needed to see consultant urgently! Long boring story I have told before & PALs did tell me in Aug that my consultant was on leave but had written to Prof Wilson at Royal Brompton about me? Several weeks later I received an appointment to see Prof Wilson but not til Nov 24, I presume because my consultant does not know enough about InV Aspergillosis (I have Bronchiectasis too 8 yrs now). I have been reading other people's comments on here & it seems they get meds for Bronchiectasis? I never have? I just have Symbicort for Asthma & some had physio show me breathing techniques to help cough. Plus on my own request I have some Amoxocilin on standby incase I feel I am getting chest infection. I cough up mucus & blood occasionally , my breathing is so bad I,m frightened to go out & I do go out to go to bank or food shop when I have to, but then I keep falling asleep sitting upright on sofa & can,t stop myself & wake gasping for breath, scary. I,m alone now as partner died 2 yrs ago of cancer, l moved into my apartment, I had previously bought when my partner was sick & hardly know anyone & only ones I do know are older & not on my wavelength, altho they are nice people. I can,t understand why I have no meds like others seem to have? My consultant did say back in April that he could arrange oxygen but never did! I know Inv Aspergillosis is life ending as I read up on it myself, but until I see Prof Wilson at Royal Brompton next month, I don,t know what will happen to me or when & frankly I have given up & eat unhealthy sweet stuff & cereal as cannot be bothered to cook just for me. I do go out every couple wks with my daughter for a meal. I drive to her because she lives in London 25 miles from me, or she comes to stay sometimes. I don,t even know if I,m I'll or not at the minute (coughing blood sometimes & breathless constantly) not sure if infection as feel same all the time now. I don,t sleep well, afraid to go to bed till early hrs because of breathing, very depressed & not looking forward to trip to see Prof Wilson, as will drive to my daughters to pick her up & then get train to London Bridge & tube to South Kensington, as easier than driving into Chelsea, but I have low immune system & going by tube is unhealthy for fit people, so may take mask to wear to help stop catching germs floating about. One more thing, I woke up a few days ago & my tongue was swollen & glands in my neck & could barely swallow as tongue swollen right down throat, I had not bitten it & I took my usual antihistamin & it slowly went down after a few hrs, has anyone else had this happen? Anyway that's my rant over again, wishing you all well.
Thanks for any comments that may help me relax a bit!