life expectancy for interstitial lung disease

I was just told that I had this very MILDLY. I don't know if it works like a cancer and I sure as H%^$@ don't feel like I'm going to die over this. My O2 levels stay around 98 to 96% and I have lings of someone that is about 8 foot tall and I thought WHAT ARE THEY TALKING ABOUT WHEN THEY ASK ABOUT LIFE EXSPECTENTCIE? I am going to do a lot of praying to see if I get it confirmed to even having this disease. I was scared to death when my doctors nurse told me I have Masses in my lungs and I sure do not want to die as I don't feel its time for me to go. But now after reading this, I fear maybe I really am going to die after all. I guess all I can do is leave oit all in the hands of God, PUMP YOUR LUNGS UP SO TIGHT THEY FEEL LIKE THEY ARTE GOING TO BUST IS MY BEST THING TO OFFER YOU TO DO.

Hi, This last week I have had a result of half my tests as the others come in on the 16th February 2016, so we wait for those in the mean time I search for paperwork in regard to RA diagnosed in 1997,Treatment has been a few , yes I am male 66 in Australia. I happen to mention a couple of years ago about my dry cough, nothing was replied back to me but just keep an eye on it , In time whilst doing a work which needed a little more than normal effort I noticed a tightening effect across my chest which felt close to my Heart Attacks (3) later Heart Failure . I have a RA specialist of great knowledge and a great friend after all these years Doctor G. Champion hear in Adelaide South Australia, We did the ladder of trying to find the right combination of med's and after up's and downs "Humira" 40mg by injection per fortnight seems to doing ok, I must point out the heart problems along with a combination of meds as well so over the course of a day I'm pretty Pilled out. RA has been found in the lungs a part I probably contributed to over the years, Have been smokeless 1994, So I have just started my new journey with RA of the lungs, Time factor is to be mentioned,"i like to know what and how long this journey is going to be ,I'ts my body, I have a great wife and at least 12 grandchildren to see more of yet, My dear wife has Chronic Asthma as well so we are foolish in what we do we know our limitations, I am chomping at the bit to find out the other result.l. Thank you for taking the time to read my note. Regards Bill.

Hello I have been battling with ILD for 10 years with plueral and heart disease due to radiation treatments from cancer i had in 1977 seems radiation hit heart and lungs as well as tumor....i have been progressing all along but last 3 years needed 02 first at night ..then some days if sick ......but since october been in hospital 3 times with recurring pnuemonia/bronchitis so scared i will go so low in 02 they will vent me ....seems my nodule and scarring is growing and now appearing in other lung...a biospy was done and not lung cancer ...good news they said ha...not.... still cant breath other rounds of bronchitis i could get off 02 during day this time not...also seems my left vocal cord is paralyzed ....i think i am entering the end stage but my docs wont say it i am looking at stem cells but waiting to hear from doc if they will helpy case. My only advice is if diagnosed early get treatment and go to pulmonary rehab

I am seeing a pulmonologist after 2 lung xrays, which showed a "thickening of lower lobes", then CT which points to ILD. I feel great as well, bike home from work, jog on weekends... I have had intermittent wheezing for years, which my other doctor did not concern with; now my new one was worried, esp.after CT.Everything I read scares me too! There is nothing positive. I am afraid of what the pul.doc will tell me tomorrow.I am about to turn 63. Never smoked but was exposed all my childhood and young adult life. Isnt there any hope other than transplant?

hello thanks for replying to my post,
I am sorry you have not been well try to keep positive I will keep you in my prayers
I must say I was scared to death my pulmonary put me on o2 at night when I sleep and is treating me with steroids.

Nothing is working so far, in fact what I have noticed is extreme pain in full rib cage front and back I especially notice this after I eat or drink something. I have lost a lot of weight since I was diagnosed.

Heres Hoping for Better Days

I am 41 years old and was diagnosed with respitorty broncholialitis interstistial lung disease a lil over a year ago . I had x-rays, ct scans, bronchoscopy, and open lung biopsy . I had been mis diagnosed for 6 months prior 4 times with reacurrent pneumonia . I am a mother of 8 4 girls ages 22,21,15,13 4 boys ages 8,5,3,and 1 and was told 2 months ago I had 6-10 years to live , unfortunetley for me I seen my specialist again yesterday and they are now giving me 3 YEARS !!! My new CT scans showed it is progressing more quickly then expected. I have been on oxygen since diagnosis , steroids, and antibiotics. Scared Out Of My Mind and leaning on Jesus and praying for a MIRACLE

Yes I was just diagnosed myself and the best way to handle it is to go on U-tube find some good Christian music listen to it and talk to the Lord for strength. Try not to zone in on yourself . Worst thing you can do,I still have not fully accepted the diagnosis and I still breath fairly well but know it will get worse. I cough up blood which is very disturbing when it happens. God bless you, Fight the good fight.

I lean on him always! He's what gives me hope even when the doctors have said I have none.

Thank you for sharing I will keep you in my prayers and also pray for your family. It must be tough on you. I am at a loss for words, except to ask that you keep positive thoughts and keep God on your side.
God Bless you

Hello Mishka,
May I ask the name of the drug in Japan that helps ILD patient as you mentioned? My brother just got it and is looking for the best help for it.
Thank you very much nd God bless,
Maria

Can you move the computer into the bathroom? Try to remain patient and bless you for caring for her.

I hope you're not still in denial and doing better. You speak of God, then you know its not up to us when its "our time", whether we feel like its our time or not. And "PUMPING YOUR LUNGS UP SO TIGHT...." I wish I could still do that. Enjoy filling those lungs long as you can...with ILD that will soon go away and you'll be gasping for every breath. Stay out of denial, and enjoy what you have left.

I have UIP, I was diagnosed with 1/19/2005, certified disabled with , she needs to be identify the environment that's causing her check her home for mold,asbestos .....it is an environmental exposure disease, not a systemic disease steroids long term are harmful, google UIP Mater definition, I've not seen a better explanation. An exposure had to occur, typically when hypersensitivity runs in your family line, most people don't find out until it's too late. You can use steroids short term only when your inflammation is severe along with a ZPak...I also use Respir-Ease daily, for inflammation and ChlorOxygen to help build blood cells....(after asbestos...etc). Do your research most people die due to being treated incorrectly or nor at all order her medical records why she can release them to you and assign A Power of Attorney so someone can handle her affairs as she wishes. If just diagnosed test areas she spends of her time she can't return to the environment that caused the exposure as re-exposure will cause death pretty quickly, so please if she plays an instrument test it too. I was told too to get my affairs in order I'm still here listening blindly to the physician for these disease isn't good choice as I am sure your physician has explained any of this as "we're laymen" it's your body and life fight for it. The items I suggested can be ordered at ELLIOTT'S Fine Nutrition online...my doctors told me I'd turned to magic medicine....I alive due to the incorporation of items and issues I just cited to you. I am not affiliated with Elliott's I am a loyal customer just so you know.

I just noticed the date ...hopefully it helps anyone newly diagnosed...it doesn't have to be but your family does need to understand what they can do to protect themselves if they notice symptoms in another family member.

In response to the person who said," Enjoy filling those lungs for as long as you can--soon you will be gasping for every breath", what a negative, dreadful killer of joy you really are!! If that is your reality, so be it.
I recently received an ILD diagnosis and I have a cough that is a cause of concern. However, I have no shortness of breath whatsoever and can run up hills with no difficulty. I will be taking the prescribed pulmonary function tests.
Moreover I have been to my internist for three recent visits and to the pulmonologist once. On all visits my lungs were completely clear. Keep your acrimonious dire prognoses to yourself--please!!!