New member

[Joneswm]

Hi I'm new here and just and am coming to terms with my diagnosis.

[PastMeBest]

Hi Joneswm a very warm welcome to our friendly and informative forum. If you have a lung problem you are in the right place to get any questions you may have answered and any support you need.

I hope you enjoy your stay with us and make many new friends.

If you would like to tell us a bit more about yourself, that would be very helpful. Knowing what country you are in would also make a big difference to any answers to your questions. Treatment in the UK is vastly different to say treatment in the USA.

Regards. John

[Joneswm in reply to PastMeBest]

I am living in the UK. I have NSIP.

[PastMeBest in reply to Joneswm]

Hi Joneswm "Thanks" for your reply. NSIP isn't something I am familiar with. Does it mean you keep getting Pneumonia infections?

John

[Joneswm in reply to PastMeBest]

Hi John. It is non specific interstitial pnuemonitis, which I guess is pneumonia. I do get infections, more so in the Autumn and Winter months. I understand this causes hardening of the lungs, hence my breathlessness. It appears not many people have heard of NSIP. Hoping someone here will have ! Thank you for replying.

Wendy.

[Nottobad]

Hi joneswm welcome to the group. Looking forward to getting to know you. Take care xx

[Joneswm in reply to Nottobad]

Thank you.

[Katinka46]

Good evening, Joneswm. This is brilliant forum: friendly, helpful, and very supportive. Could you please tell us little more? You say you have a diagnosis. Of What?

This site covers all lung conditions. And there will be people who can help you with specific advice.

All the best

K x

[Joneswm]

Interstitial lung diseases (NSIP) get very breathless at times and feel so tired.

Get clammy and feel faint, not nice as it can come on at any time.

[Katinka46]

Thanks for the information. I assume that that is coming from the same stable as Pulmonary Fibrosis? Sorry to hear it. It is nasty. I do not have it, although I do have a fibrotic small airways disease. So we do have some things in common.

Others will respond and be able to help you much more.

All the best and keep us informed of how things develop for you.

Kate x

[Joneswm]

It is a fibrotic disease, affecting both lungs. Thank you for your comments.

[casper99]

Hi Joneswm and welcome to the board. I must admit, I've never heard if your lung disease but, I'm sure someone will be along that has.

Just wanted to say hi and I hope you find our forum as friendly and informative as I did. xx

[Joneswm in reply to casper99]

Thanks Casper. I hope so too !

[Peteybob]

Hello Joneswm and a warm welcome to the group

[Joneswm]

Thanks peteybob !

[MisUse]

Hi Joneswm and welcome. If you put NSIP in search bar, top right, you may find lots of info to help you. Best wishes. Jean

[Sheilab123]

Hi and welcome Joneswm, never heard of NSIP though sure some of our members who are familiar with it will be along shortly. Once you have come to terms with it your half way there. I was in denial for years and been much happier since accepting diagnosis. Take care xx

[Toci]

Hi, and welcome to our community. x

[Dedalus]

Welcome

[lormaran]

Hi and welcome to the community. All friends on here, so, lots of support and encouragement. Take care. x

[Hidden]

A warm welcome from me too joneswm. I don't know if there is anything I can help you with - I have copd, but there is so much knowledge on this site I don't think you will have any problem getting helpful advice about your NSIP, and if you just want to talk, well we are here too

[fran58]

Hi joneswm, I was originally diagnosed with Alveolitis 7 years ago and during this time I have had pneumonia several times, recently I have been feeling poorly, my consultant arranged for me to have a CT Scan, I have been diagnosed with NSIP fibrosis with 50% lung function, I am just waiting on my follow up appointment for treatment, I haven't heard of this condition prior to diagnosis. 😊

[Joneswm]

Apparently not that common fran58. I'm due to see my Consultant next week. I need to ask some questions, as some days I am so drained of energy, breathless and feel like I am going to faint ! Not sure if this is due to a lack of oxygen or what. My respiratory nurse prescribed Carbocisteine to help clear mucous, flu jab booked for October. I know I have to try and keep myself well, and have a course of antibiotics to keep at home. This will be my second winter after diagnosis, so the next 5 months will be testing for me. I will get my latest lung function test result Monday. Take care x

[fran58]

Hi joneswm, I will let you know what has been recommended for my treatment over the next few weeks, keep well.