Hello to all,

finally I think I have found right community and people to contact.

My name is Ariana I am 23 from Slovenia and yes...I am as well in the "club" of patients who have bronchiolitis obliterans (caused by chemotherapy and radiaton). I have had it for like 15 years and for the last three years situation got worse and what is more, I do not have any pulmonologist here in Slovenia to help me because all they treat me as a complicated patient and as I have had experiences with them, I think they do not want to deal with me because our system....well better not to talk about.

I am actually here to get some advise or suggestion, I am as well ready for new treatments, everything that can my life make more easier and to get back on the old track as I used to. So I got this disease when I was like 10 or 11, and while I was at the pediatrician pulmonologists, everything was fine, seriously, I was using only Flixotide (we tried with applications of Medrol but the treatment was unsuccessful ). Although I just had 30% of capacity I went on hikings, sightseeings, etc. Well, on 2019 everything got worse. I had pertussis and no one except my hematologist, didn't take measures in time. Since then I have changed like three pulmonologist because or they were yelling at me when I need help or they were insisting with therapy which didn't help, etc. With one word, disaster

In this time I have tried like many inhalators, many medicines, honestly it did not help me nothing, maybe Spiolto which I am taking right now. As well right now I have some kind of infection which has been last like for four weeks and beside Spiolto I am taking FAM therapy (Alvesco, Sumamed, Singulair). It is really hard because being all the time limited and barely walking, all the time coughing...this is not my life, I believe I can as I said before, come to back track and go to hike again, so I believe this page, this community can help me or give me advices. I know about my disease it is incurably but I believe with right pulmonologist and right therapy I can stabilize it again.

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