Aspergilloma & Bronchiectasis sufferer

[frustratedrunner]

Hello all, I'm new on this forum,

I was infected with the aspergillus fungal infection, at the start of 2017.

The infection has colonized a cavity in my lung from a pneumothorax operation that went wrong over 25 years ago.

I was started on Itraconazole after a 5 week stay in hospital who initially thought I had TB.

I have now being put on Voriconazole after waiting for months for correspondence with the specialist clinic in the UK.

I have been told by one doctor that he was a excited as I was a textbook case for them.

The medication that I'm taking is leaving me constantly fatigued and I have constant pins and needles feelings in my feet, have to take it one hour before or two hours after food, which makes life more difficult.

I feel like a guinea pig for the respiratory team of consultants at my local hospital.

I would appreciate advice of anyone that has had similar issues, as I am fed up and reached the end of my patience.

Thankyou

[Cataleya2018]

Buna, am scris despre mine in 2018 pe acest forum. Si eu am aspergiloza pulmonara si bronsiectazie. Am fost operata de 2 ori, pentru bronsiectazie, dar deja inainte de a 2 a operatie am fost diagnostica cu aspergiloza. Iar la a doua interventie aveam un aspergilom pe stanga. La fel ca si tine, am inceput cu itraconazol, nu am raspuns el. De atunci am si hemoptizie. Ma simt foarte rau si acuma, am frisoane, le-am avut inainte de diagnosticare dar persista in continuare. Dupa cateva luni am inceput sa iau voriconazol. Si in prezent iau tot voriconazol, si nu stiu cat timp voi lua, pentru ca ma simt foarte rau chiar si asa. Dar e mai bine cu voriconazol decat fara, chiar daca imi da stari de rau. Reactiile adverse pe care mi le da sunt groaznice. Imi cade parul, ma mananca pielea, mi se inegreste in fata ochilor prima jumatate de ora si parca as vedea stele verzi, ma deranjeaza lumina chiar si la cateva ore dupa ce le iau. Mie foarte rau incat nu pot iesi din casa dupa ce il iau toata ziua. De fapt respir greu la cel mai mic efort, stau numai in pat, din cauza starilor de lesin. Acuma dupa atata timp parca se reduce mucegaiul cand expectorez. Nu stiu cum trebuie sa fie sau sa ma simt. La mine in oras nu a mai fost niciun caz asa. Sunt depasiti de situatie. Ma ajutat acest forum, si linkurile pe care le-am primit. Am citit tot ce se poate citi despre boala, incerc sa iau pe langa suplimente pe care le-au luat altii, dupa ce sunt sigura ca mi s-ar potrivi. Am luat vitamine si aminoacizi scrise de medic. Dar starea mea e mai buna putin comparativ cu momentul dinaintea operatiei. Si simt chiar si medicamentul ca imi face bine. E minuscula schimarea dar totusi exista. Sper ca intr-o zi sa fiu mai bine, macar sa duc o viata normala, sa pot lucra.

[Saassii]

Where did you breathe in the fungus? Have you located the source and therefore removed it from your life? Are there any signs of mold or water damage in your home or workplace?

[GAtherton Administrator Fungal Infection Trust]

Hello - it sounds like you have a form of chronic pulmonary aspergillosis. That is a very rare infection (as your doctors have informed you) but there are very busy support groups for people with CPA at facebook.com/groups/aspergi... - hosted by myself as this is our specialist area. You will get more responses to your questions in that group.