Interstitial lung disease : Hello! I... - Lung Conditions C...

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Interstitial lung disease

AlexZ03 profile image
19 Replies

Hello! I have just joined this forum as my father who is 53 years old has been diagnosed with ILD. We have noticed that recently his skin turns a bit blue and then it goes away after a few minutes. Is this a normal thing for those who have ILD? I am new to this and the news came like a shock for me, if you can please help with any information/advice?

Many thanks!

19 Replies
cofdrop-UK profile image

A very warm welcome to you and your Father Alex.Cx

AlexZ03 profile image
AlexZ03 in reply to cofdrop-UK

Thank you!!

CDPO16 profile image

Hi and welcome Alex. I'm sorry that I can't answer your question. If no one else comes along who can help you may find it useful to phone the Asthma+Lung helpline to speak to one of their nurses.

AlexZ03 profile image
AlexZ03 in reply to CDPO16

Hello to you too!! That’s alright, any advice helps. Will try calling them tomorrow morning!! Thank you so much!!

Patk1 profile image

Hello,welcome to the forumYr dad too may find it a gd support network

Biofreak profile image

Hi Alex. Welcome. You haven't said if your dad has any breathing difficulties with his ILD. Lips or skin turning blue can be a sign that oxygen levels are on the low side. I'm not a doctor but have seen this in the past with my husband's situation. There's a lot of information on the Asthma and lung website as CDPO has mentioned. I'm sure you will have a lot of questions.

AlexZ03 profile image
AlexZ03 in reply to Biofreak

Hi Biofreak ! He does have breathing difficulties especially when walking (doing activities in general), his hands turn blue and rarely his feet too. I will have a look on the website as well!

Thank you!!

Biofreak profile image
Biofreak in reply to AlexZ03

Hope you find the answers you are looking for. Now your Dad has got a diagnosis of Interstitial Lung Disease it's important to find out what type of ILD as that description covers a wider spectrum of lung conditions such as COPD , pulmonary fibrosis, emphysema and others. Your dad's lung function should be monitored regularly so that any deterioration can be dealt with quickly and appropriately. Best wishes to you and your Dad.

AlexZ03 profile image
AlexZ03 in reply to Biofreak

We are having an appointment in 6 weeks time for further lung testing. Unfortunately, he has been diagnosed in 2019, but got lost in the system due to Covid-19 (his appointments kept being cancelled back and forth), so I believe it got worse. He has recently been admitted to A&E, and we found a good doctor who has helped us speed up the process of my dad being seen by a specialist. Hopefully we will find out soon the type of ILD.

Many thanks, Biofreak

111Addie profile image

My toes turn blue often after a shower. Exertion = oxygen drop. I’m on 2 lpm, not needed yet at rest, except to recover from a drop.

Others have reported blue lips.

watergazer profile image

Hello and welcome to you and your dad. I’m sorry I can’t help in this matter but I’m sure others can x

kenbren profile image

Hello Alex, it does sound like your father has low Oxygen levels, I have IPF and my Consultant referred me to BOC who supplied a Concentrator which I find helps when I am active I still get a shortage of breath at times which does restrict activities. Your Consultant should be able to recommend what would help and I found BOC very helpful and went through what may be of help in your Dad's particular situation. I wish you all tyhe very best and we all hope for brighter days ahead. Bless you

AlexZ03 profile image
AlexZ03 in reply to kenbren

Thank you so much kenbren !!

Alberta56 profile image

Welcome to the forum Alex and father.

craftyone profile image

Hi I have ILD , interstitial lung disease. I was diagnosed in 2014 and told I only had months to live but I am a fighter and haven't given in. I'm on 5 LPM oxygen 24/7, I also take steroids and a drug called mychophenolate plus other medications, I'm on 42 tablets a day plus oramorph. Sometimes around my mouth goes blue and have cold feet, this happens when my oxygen levels drop. I'm disabled due to strokes so I'm either in a wheelchair or sat in my rise and recliner chair. If you want to know anything I will try my best to answer your question. I am sure your father will get the treatment he needs and answers to questions.

Buugs profile image
Buugs in reply to craftyone

Hi there, just read your post and admired your positive outlook, are you taking mychopenolate just for ILD?

Crafttie profile image

Hi Alex my husband 64 has ILD both lungs affected he was diagnosed in 2016, he has chemo therapy every 12 weeks with helps to put out the fire so to speak, he has been on nintendanab for about a year now but his body does not take kindly to this drug, he is on oxygen 24/7 just gone up to number 7, we have a consentrater and liquid oxygen so we can go out for short amounts of time, he is on the active list for a double lung transplant fingers crossed he wont have to wait long, he used to get a blue/gray tinge to his hands and feet, the oxygen stopped that, but his fingers and toes are very clubbed now, hope you get sorted soon take care.

Patk1 profile image

Welcome to the sure others with ILD will b able to help u x

horseygirl_0103 profile image

Firstly -a warm welcome to this forum

Hi there I was diagnosed with it in 2019 Recently i have been in & out of hospital because every 2 weeks my oxygen levels keep dangerously dropping causing me to be hospitalised

Im on mycophenalate I was supposed to be having oxygen at home but on a previous stay in hospital i tested psoitive for covid & subsequently upon my recent admittance picked up a secondary infection whilst in A & E waiting for a bed .Now ive been told i cant have home oxygen because any readings that are recorded during an assessemnt would be inaccuarate so i ahve to be covid negative & infection free

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