Fybrosing NSIP: Hi I'm new to this. I... - Lung Conditions C...

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Fybrosing NSIP

Wjack profile image
10 Replies

Hi I'm new to this. I was diagnosed with fybrosing NSIP, last year ,

Really struggling to come to terms with it. Anyone out there feeling like me.

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Wjack profile image
Wjack
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10 Replies
diesel12 profile image
diesel12

Hi and welcome. I'm sorry but I don't know what NSIP is but someone will come along who can help x

Wjack profile image
Wjack in reply to diesel12

Thanks for your reply it is a rare lung desiese and it's called Non Percific Interstitual Pneumonia with Fybrosing on my lungs.There is no cure just medication of Steroids to try to slow it down

Shazrab profile image
Shazrab in reply to Wjack

Hi wjack I'm sorry to hear your struggling I also don't know about your illness, hopefully someone will and maybe give you some advice. I'm pretty new here and felt so alone before I joined now I feel I've got others who can understand my thoughts and feelings . I'm waiting on s second opinion as my specialist was no good at all , I do have asthma and copd , some days I can't cope either. It's hard having lung disease I think unless you have it no one can really understand how it effects you, are you on medication for your illness and if you don't mind me asking how does it effect you ( sorry don't feel you need to answer my questions) I'm just trying to understand what your illness is. My thoughts are with you x

Wjack profile image
Wjack in reply to Shazrab

Hi Shazra.

Thank you for your kind words. yes it's pretty daunting it's hard to take on board, I have tests every six months, a Lung Function to see how good they are. Had my tests last week and were not great put my steroids up which I hate the side affects are awful.Aalso I have to take Antiobiotics as I keep getting bad chest Infections. have tried two lots so far both made me very very sick so still trying to get the right ones.My illness makes me very tired I also have other medical problems but I will not bore you it's just one in a line of my problems. At th emoment I am very down I don't want to see anyone get dressed nothing, And this is not me. but I think of all the people that are much worst off.x

Time_2_drink profile image
Time_2_drink in reply to Wjack

I'm sorry you feeling so low I can empathise although I don't know anything about your condition I do understand about not wanting to see people or get dressed that is what I am like I'm sure someone will be able to talk to you about your illness keep reading the posts and posting yourself it does help

Wjack profile image
Wjack in reply to Time_2_drink

Thanks for your post trying to keep positive 😊

Shazrab profile image
Shazrab in reply to Wjack

Hi again I just wondering how you've been feeling I've not been on the forum since I last spoke to you. I've been feeling over anxious lately and extremely tired and like yourself don't want to even see anyone im in so much pain think that's why . But I can understand a little about your emotions, You do seem to have to go through a lot with test and stuff I don't blame you for feeling the way you do ido hope things are a bit easier for you at the moment.. and that your feeling a little stronger, best wishes Shaz

Wjack profile image
Wjack in reply to Shazrab

Hi Sharzab

Thanks for your thoughts I've been feeling really low I've also been diagnosed with COPD on top of my lung disease. Also other medical things too.

Yes as you I am sooo tired all of the time or Fatigue should I say. I do hope you start to feel a bit better soon my thoughts go ou,t to you too.

Best Wishes

Wjack

Fionafish profile image
Fionafish

Sorry to hear of your struggles - life can be very hard. Sending best wishes x

Wjack profile image
Wjack

Thank you Fiona, I thought there would be a lot more people on this Foram

with something similar to mine illness .x

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