Posts - Living with Interstitial Lung Disease (ILD) | HealthUnlocked

Living with Interstitial Lung Disease (ILD)

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Cold head in night

Hi I have pulmonary fibrosis & on O2 including 1 litre at night. I’ve started waking in the night feeling really cold especially the top of my head. I put on...

Hi I have pulmonary fibrosis & on O2 including 1 litre at night. I’ve started w...

•1 month ago

Thank you all for kind replies

Thank you for taking time out to reply to my post, it really helps to know that we are not facing all this alone. The CMDU doctor did eventually get in touch...

Thank you for taking time out to reply to my post, it really helps to know that ...

•4 months ago

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metoclopramide

Hi lovely group I wonder if anyone can help with some advice I’ve been taking metoclopramide to help with the the nausea side effects of pirfenidone , but...

Hi lovely group I wonder if anyone can help with some advice I’ve been takin...

•7 months ago

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NSIP and IPAF: 50 yo woman

I’ve recently been diagnosed with moderate NSIP and IPAF. I’m wondering if anyone else has this type of ILD. What are your treatment options, how do you keep...

I’ve recently been diagnosed with moderate NSIP and IPAF. I’m wondering if anyon...

•10 months ago

non fibrotic hypersensitivity pneumonitis I think I may have this and tbh I’m so scared ? Any help with this please I see it on my notes

I c this in on my notes and basically googling all what certain wording means ? I feel sick with worry as I don’t know what to do or expect

I c this in on my notes and basically googling all what certain wording means ? ...

•11 months ago

Appointments

Hi not been on here for a long time as I've had nothing to say ,but I've a question I was diagnosed with non specific interstitial lung pneumonitis...

Hi not been on here for a long time as I've had nothing to say ,but I've a quest...

•11 months ago

Restrictive

hi does anyone have restrictive lungs

hi does anyone have restrictive lungs

•1 year ago

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Covid positive with ILD - antiviral experience ?

hello lovely people of this wonderful forum - seeking any insight or guidance I was diagnosed (11 months ago) with ILD. Despite being very cautious and...

hello lovely people of this wonderful forum - seeking any insight or guidance ...

•1 year ago

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Oxygen dips

hi guys I’ve had numerous tests and lately hosp are saying possibly ILD out if 200 diseases on the letter it said. probable diffuse parenchymal lung disease....

hi guys I’ve had numerous tests and lately hosp are saying possibly ILD out if 2...

•1 year ago

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ninintab

just received my first supply of ninintab in the post, sa bit wary about it as I've read about so many problems with it, has anyone taken NAC with it x

just received my first supply of ninintab in the post, sa bit wary about it a...

•1 year ago

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Medication

Good afternoon I have posted on here before but not very good at it ! I am going to get my first lot of Minitab beginning of January was wondering if...

Good afternoon I have posted on here before but not very good at it ! I am g...

•1 year ago

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pulmonary fibrosis

hi everyone I have been prescribed ninintab haven't taken yet but the nurse said can't take NAC and quercetin and lots of other vitamins and alchhol and...

hi everyone I have been prescribed ninintab haven't taken yet but the nurse sa...

•1 year ago

Re Introduction Hi everyone

Hi everyone My name is sara brown.I joined this community a long time ago because I was diagnosed with ILD in 2019 but havent posted for years so I thought...

Hi everyone My name is sara brown.I joined this community a long time ago be...

horseygirl_0103

•1 year ago

Nintedanib

Hi, I am absolutely useless with technology…… I wrote a lengthy update about myself, this drug, other drugs, hospital stay, decline of lung transplant at...

Hi, I am absolutely useless with technology…… I wrote a lengthy update about mys...

•1 year ago

veins arteries

hi has anyone experinenced oxygen dropping due to not going straight to the lungs it goes from vein /arteries

hi has anyone experinenced oxygen dropping due to not going straight to the lun...

•1 year ago

Nintedanib

Interested to know how well others get on with Nintedanib? Since starting on it in March I have been feeling ill most days (like coming down with flu). It...

Interested to know how well others get on with Nintedanib? Since starting on i...

•1 year ago

ILD/ PULMONARY HYPERTENSION

Hi I'm Sara from ManchesterI was diagnosed with ILD in 2019 which has left me absolutely breathless making the slightest movement I spend my days attached to...

Hi I'm Sara from ManchesterI was diagnosed with ILD in 2019 which has left me a...

•2 years ago

portable oxygen

wondering how anyone gets around taking a portable concentrator abroad. The nhs one I was given has not to leave the uk. Hiring one is quite expensive.

wondering how anyone gets around taking a portable concentrator abroad. The nhs ...

•2 years ago

Mycophenolate

Hi all I have Hypersensitivity Pneumonitis Interested to know how others get on with Mycophenolate? It seems to make me incredibly drowsy ie really...

Hi all I have Hypersensitivity Pneumonitis Interested to know how others get o...

•2 years ago

Hi everyone Happy Mayday

Hi everyone Sorry Ive been away for so long Ive not been well at all & having to do my 2 litres oxygen survivial days (except today as its bank hol) Ive...

Hi everyone Sorry Ive been away for so long Ive not been well at all & hav...

horseygirl_0103

•2 years ago

Re introduction ILD

Hi everyone My name is Sara sorry ive been away for so long Ive been in & out of hosputal over the dangerous drop of my oxygen levels This is my 11the stay...

Hi everyone My name is Sara sorry ive been away for so long Ive been in & out of...

•2 years ago

Partner with lung disease

My partner has several ailments. Prostate cancer, heart failure, etc and interstitial lung disease. He was taking methotrexate, last may he went in hospital...

My partner has several ailments. Prostate cancer, heart failure, etc and interst...

•2 years ago

NINTEDANIB (OFEV)

I have RA and rheumatoid ILD. I started taking nintedanib in July last year, I had a medication review in January and I explained all the side effects I was...

I have RA and rheumatoid ILD. I started taking nintedanib in July last year, I h...

•2 years ago

Flying

Hi has anyone flown with pulmonary fibrosis to Canada taking portable ambulatory Imogen gadget x

Hi has anyone flown with pulmonary fibrosis to Canada taking portable ambulat...

•2 years ago

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HARMONICA CLASSES & NEW WHEELCHAIR

Hi The Astham/Lung dsease UK has set up a set of harmonica classes which started last week .to strenthen the breathing I loved it -it . its on a...

Hi The Astham/Lung dsease UK has set up a set of harmonica classes which sta...

horseygirl_0103

•2 years ago

Hi Im back sorry I havent been on for a while

Hi I havent been on for a long time My ILD specialist has got me an appointment as a day patient at sheffield hospital on 1st feb Thankfully an...

Hi I havent been on for a long time My ILD specialist has got me an appoi...

horseygirl_0103

•2 years ago

New Member - Progressive Pulmonary Fibrosis

I'm posting for my Mom, who is 88 and lives with me. She was diagnosed a year ago with ILD- Fibrosis. She's on oxygen 24/7 ( but only 2 liters). Her O-sat...

I'm posting for my Mom, who is 88 and lives with me. She was diagnosed a year ag...

Aerobics-Instructor

•2 years ago

OXYGEN CONCENTRATORS

Hi All I have now got 2 oxygen concentrators in my house one in my lounge & one in my bedroom ,& my prescription is it must be up on 4 litres whilst im...

Hi All I have now got 2 oxygen concentrators in my house one in my lounge & ...

horseygirl_0103

•2 years ago

Morphine reaction.

hi all, Been having this chronic IPF cough for 2 months now and tried everything including the kitchen sink at it to no avail. GP suggested, as another throw...

hi all, Been having this chronic IPF cough for 2 months now and tried everythin...

•2 years ago

Newbie with IPF

Hi I have just joined, my name is Hazel and I live in West Sussex. I was diagnosed with IPF in June this year and was started on Nintedanib in September...

Hi I have just joined, my name is Hazel and I live in West Sussex. I was diag...

•2 years ago

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