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!
A very warm welcome to you and your Father Alex.Cx
Thank you!!
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.
Hello,welcome to the forumYr dad too may find it a gd support network
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.
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!!
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.
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
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.
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
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
Welcome to the forum Alex and father.
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.
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.
Welcome to the forum.im sure others with ILD will b able to help u x
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
Hi I just joined too & I'm 62.5 & I've been reading up on all kinds of breathing issues lately, researching them & my toes & my fingertips will turn blue-ish lately when I stand up more than 5 or 10 minutes, some of the time. One site I've read on is ; the National Heart, Blood and Lung Institute and it says the blue color happening to skin or fingers is a sign of soe type of lung failure. Now don't panic because 'though the word "failure" is used there to label this problem, in this instance it does not mean failure the way we tend to think of a failure. We generally think if something fails it has stopped working, period. But what lung failure means is that the lungs are not working as well as they should work, in a healthy person.
Your dad's lungs probably don't work 100%, we know that because of his disgnosis his dr made. The site seems to be saying if skin/fingers stay bluish or for a good while you'd need to contact his dr to see what he wants you to do and of course the Institute says he should let his dr know about that symptom (and any/all symptoms he experiences because they may be related to his lung problems & his oxygen levels may get too low or he could be having other unrelated health problems too, anytime new symptoms pop up.
There are things a dr can do (and/or recommend for your dad to do) to get his oxygen level/carbon dioxide level to be more on point, so that he's getting enough oxygen into his bloodstream.
If your dad lives with you, you may need to help him see & notice new symptoms & help him to bring them up at dr visits (depending on his clarity of mind, health overall & the tendency of a lot of men to be so stubborn when it comes to hearing their loved ones tryig to talk to them about their health problems or what they need to do to manage them.) If your dad's anything like the many older men I've nursed through different illnesses & hospice time periods in my life, you will probably have to make him keep his dr appointments & be around to urge him to tell his dr if new problems/symptoms are going on or if he's feeling bad, because most guys will blow through an appointment like they are just fine, they won't speak up & tell their drs anything but instead will ignore symptoms & think what you're trying to get them to do (so they'll get better or feel better) is just a lot of hogwash.
So..... may the force be with you, dear. It's a vastly variable health issue & alot of how bad or good he will be, how he'll feel will depend on if he can and does do what the doc wants him to do.
Interstitial Lung Disease
Interstitial Lung disease...caused by rheumatoid arthritis
Interstitial Lung Disease
institual lung disease
