non fibrotic hypersensitive pneumonitis

[Hometeam2016]

hi guys does anyone have this diagnosis ? Any advice please

[Germantara]

Sorry don't have that issue but you might get some good responses on here

[Tawny10]

hi I have HP but with Fubrosis

[Hometeam2016 in reply to Tawny10]

Hi did your notes say this

[Tawny10 in reply to Hometeam2016]

Yes u was diagnosed in 2017

[Hometeam2016 in reply to Tawny10]

No I meant did it say fibrosis , mine says non fibrotic does that fibrosis

[Tawny10 in reply to Hometeam2016]

Initially fibrosis not mentioned but said fibrotic around 2021

[Bingo88]

No sorry I can't help. And can't find any mention of it in the past history. Brian

[Blyth1]

hello Hometeam2016, like Tawny10 I have HP now with fibrosis. Are you on any treatment? Have you had hospital tests to try and identify what may be the cause/ irratant that has caused your lungs to react by becoming inflamed? My personal advice would be to be very proactive and see the consultant expert in ILD in your area if you have not seen them already. Try and find out the trigger/ triggers and eliminate it / them from your environment. Most importantly stay away from Dr google!

Come on here and post whenever you need to, I have found people to be very supportive and helpful. Take care x

[Hometeam2016 in reply to Blyth1]

Hi I have googled only because I can’t find any information or gp don’t have any info and I’m waiting for referral , I’m just so worried , and scared , dr mentioned it looks like it’s been there a long time but on notes it said non fibrotic so does that mean no fibrosis I thought it was all fibrotic .

[Hometeam2016 in reply to Blyth1]

No treatment only see letter yday on my app

[Hometeam2016 in reply to Blyth1]

Hi I’ve finally got an apt with ild Monday they are doing a broncoscopy which I’m nervous about ? The professer said may case is unusual so hoping to get answers as I’m still coughing etc now my lips go dark purple sometimes when I’m constant coughing

[Blyth1]

Pleased you have an appointment, do you know what they will be doing during the bronchoscopy? Sometimes they look, other times they take samples. If you don’t know just ask them they will be happy to tell you.

I don’t know about your hosp but certainly when I had one everyone put me at ease. Your purple lips when coughing is not uncommon, make sure your consultant knows this is happening if you have not mentioned already.

Good luck for Monday Hometeam 2016 . Let us know how you get on. Remember there is a whole community here ready to cheer you on and offer advice when we can. Take care and enjoy the weekend x

[Hometeam2016 in reply to Blyth1]

thank you , I know I’m not the only one but I feel like I’m not in a great way the dr called it an unusual case in just so scared of what lies ahead