Hi all u lovely people..not been on here for a while..some may know my long story & probs with my local hospital..apps etc..referred to Royal Brompton in November & admitted early Feb for tests I.v meds (antibiotics& anti fungal) 2 weeks..Also taking Itracanazole 100mg 2 x day..Had bad re action to Voricanazole over a yr ago..after my consultant at Pembury Hospital diagnosed me with Invasive Aspergillosis..(Long story..Had to involve PALS) then no treatment until my stay in Royal Brompton.! I have been back to RBHosp again in April 2 wks I.v meds again (I saw Prof Wilson & he explained, I do have Aspergillosis in a new cavity in L lung) as well as Bronchiectasis 9 years & also a type of Emphysema not from smoking? I have not smoked for 9 yrs. So I am having these 3 two weekly stays (3rd one is 17 June) then will decide next plan from there? I was given a Nebuliser with pipe to use 2 x daily & Pep S system (pipe I blow thru after nebuliser to help me cough, like blowing thru straw)..
After my 1st stay in Feb..I came home feeling like new, could walk further without breathlessness & breathing better, appetite restored etc..after about 2/3 wks started to deteriorate again? I mailed my consultant (Dr Loebinger) had reply call next day to say is normal & that's why have to go every 8 wks until get Aspergillosis controlled? 2nd visit April, was'nt so good..had probs with long line I.v going wrong first day, arm so painful had to be removed (longline not arm) canullas go wrong ever couple days etc. This stay did'nt feel much better when came home? Still taking Itracanazole everyday, oh forgot to mention have heart murmur too! Have been very depressed too, as I have no friends or family near, they live in London & i see my daughter often, but she does'nt drive..I do drive, but most days just stay in & see no one..i,m very nervous out on my own, because I have hearing probs & get anxious out alone, since my partner died 2.5 yrs ago..another long story..Anyway, back in the RBH on Wed..for 2 wks..The Drs, nurses, pharmacists, physio, ologists..staff..food etc all excellent & I have people to talk to..
I,ve read others accounts on here about Aspergillosis & it's a bit scary as looks serious, so must ask more about it this time..Do others also find they swell up in warm weather, my feet, ankles swell if on my feet for a while..I wear support socks when go out, but won't with summer shoes..left one is worst several yrs now, plus knee is hot..Feel like going mouldy everywhere & rigor mortis setting in already lol..Need more exercise, but no incentive to go gym on my own..will use gym in hospital with physio..
Anyway, that's me for now..hopefully my stay in RBH will cheer me up, hate being alone...love to all..Sandy xx