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My step dad has always been a smoker and it's not the first time that he had lung problems. Now, the lung problems have moved on to a completely different level and my mom told me that he has interstitial lung disease. They live on the other side of the country and I am not on great terms with my step dad, but I would still want to know more about this interstitial lung disease. Is it fatal, like my mom said on the phone? What is the life expectancy for interstitial lung disease?

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I am sorry to hear about that! Unfortunately, interstitial lung disease is a terminal condition that does not have any cure. Optimistic predictions say that patients with interstitial lung disease have a life expectancy of two to five years, whereas more conservative accounts tend to stick with less than a year.
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I wanted to send you a note to help you navigate the complexity of interstitial lung diseases (ILD). There are many of them and one's life expectancy can be very different depending on what the exact diagnosis is. Pulmonary Fibrosis (known as IPF), is not treatable as of yet, but it is impossible to make an estimate of duration of life. Some people progress quickly and some more slowly and it is also important to know when the diagnosis was made and how much damage was discovered at the time. There is a durg on the market in Japan, and it will soon be available in the EU, that can help slow the disease in some patients. Unfortunately we are still working on getting FDA approval in the U.S. But a patient can get pulmonary rehabilitation and some drug relief for symptoms. Please go to our website at ***edited by moderator*** web addresses not allowed to learn more, or just call us at the Coalition for Pulmonary Fibrosis at ***this post is edited by moderator *** *** phone numbers not allowed **
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. Good luck. Mishka Michon
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My sister asked me to do research on Interstitial Lung Disease for her mother-in-law.  She is at the hospital now with pneumonia.  I believe she called it UIP which she thinks the doctor said was usual interstitial pneumonia.  Her mother-in-law lives in Joplin, MO and just lost her home in May due to the F5 tornado.  She bought a house and is scheduled to close on house on July 15th.  The doctors are advising the family not to allow this sale to happen because she will never live there.  Doctor says that IF she makes it out of the hospital, she will be sent home with hospice. 

Does any of this make sense?  Is it possible that pneumonia could be the final stage of Interstitial Lung Disease?  She is also suffering from chronic bladder and kidney infections.  The doctor has asked them to call the family in from out-of-town. 

My grandmother had pneumonia many times in the past five years of her life.  In that time, the family was called in at least four different times.  She lived to be 92 and died in her sleep.  I don't know if calling the family in is serious or just "in case". 

What do you think?  

 

 

 

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My husband had pneumonia with interstitial lung disease, he never left the hospital, he died 10 days later. He was 65 years old.

 

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sister in law has had this for over 5 years now and did fine until the end of the 5 year period the dr gave her. Now she has given up on life and tells everyone she is ready to die. She was hospitalized 3 months ago with pneumonia and came home 2 days later. She is on oxygen all the time now, but refuses to do anything the nurses tell her to do..Like exercising her lungs. Just take big deep breaths and cough it all out, to get rid of built out phlem in the lungs. They told her just to exercise her feet and legs while reclined and she told them NO. She went to her dr 2 days ago and told him she was ready to die and he told her she wasnt going anywhere for a long time! So, I am the one taking the punishment for all this since she lives with us now. She doesnt want to walk 4 steps to go to the bathroom. She wanted a pottie chair sitting in the living room at her recliner and I told her no, and she told me she would empty it! I told her that if she could go to the bathroom to empty it, she could go USE the bathroom. Now she tells me I am taking time off of her life by making her walk to the bathroom! She walks to the computer daily though, which is alot further than the bathroom. She makes her cereal in the morning, when she feels like it. If not, she tells me to do it. She can do alot more than she does. I know she gets out of breath if she walks 15 or more steps, but she only does what she wants to, like get on the computer, then tells me to get and do for her the rest of the time. She is telling her family that she has pneumonia now, and she doesnt. The dr put her on another round of antibiotics because he heard some rattling in her lungs, but thats because she doesnt do her breathing treatments 4 times a day, like he told her to.

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Boy sounds like your going thru the same situation that my is going thru. My mom was recently diagnosed thru a ct scan of her bladder. She is a healthy (stopped smoking 3 yrs ago) 63 yr old female, strong willed, scottish, tough old broad(many sayv) The doctor suggested a lung biopmsy. She thought your nuts! I smoked all those years, of course theres scarring. But doct. seemed concerned. 2 months later had the lung biopsy (to which does more damage) to find out it is uip. Were in disbelief, since mom doesnt have l the symptoms that are associated with this disease, with the exception of shortness of breath. To which she has always had. So now she is on oxygen(which i believe was due to the biopsy) and now she's a different person. She reads everything on the internet (mostly negative, and its making us all crazy!! Now she's did a 180! I so relate to what your going thru with your sister-in-law. Reading all the negative outcomes of people diagnosed with uip, her life is now over. It's hard to be positive and relay the every body is different and ,If you believe you shall receive(my weekly pep talks) but it s tarts with them. I guess we need some positive reinforcement, but im with you i need help!! Thanks for listening!!

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I realize this is an older post but thought I would put in my experience in case someone else comes along, like me, seeking answers.

My mom was hospitalized on Aug 15 with difficulty breathing (woke up that way) her pulse ox level was in the low 60's. She was diagnosed (although no biopsy, was too unstable) with acute interstitial pneumonitis on Aug 22nd. Even with a non rebreather mask she could not maintain her oxygen level. On Aug 31 she agreed to being put on a vent to allow her body to rest and her lungs to heal. She went down hill from there. Her body didnt respond to any treatment including a blood transfusion. Her lungs hardened. We took her off life support Sept 9th and she passed away.

This is a very serious disease!!!! It has no cure aside from a lung transplant. It can be very aggressive, she went from difficulty breathing to life support to death in 25 days

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Punishment......Dumbass, selfish, disrespectful ASS..... She is dying and you say your having to put up with a punishment for taken care of her... My Mother has the same thing and I welcome taken care of her.. Every doctors appointment, anything that will give her one more day... Open your eyes.... She doesn't want to die and she doesn't know how to deal with it.... Stop fighting with her and love her and get her to someone she can talk to so she can come to terms with her dying.. I know this is your sister-in-law but you know what, she's a human, she's family and God sd to love everyone. Just be happy it's not you.. I would trade places with my mother in a heart beat.... Put on youR BIG GIRL PANTS and do what your suppose to do and that is take care of your loved ones when they are no longer able to take care of their self.... And Pray, Just Pray Nothing happens to you where you never need someone to take care of you because HONEY you maybe in for a rude AWAKENING.... Any questions..  Looking forward to it.....


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Thank you for sharing your story... I am sorry about your mother... That is about what I am going through now.. It is a terrible, horrible thing to have to go through. God Bless you...
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You are absolutely correct. I was just diagnosed with ILD and would hope that no one throws me to the curb when the time comes. I'm not too happy with this dx, but seeing there is not a lot I can do about it, a loving friend/family member would be most appreciative!
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I have just been diagnosed with Interstitial Lung Fibrosis a few days ago, after having 2 X Rays and a Broncoscopy. the biopsy shown some small particles of food in the lungs which was explain as GERD happening at night. X Rays show thickening of the lower lung walls and some stiffness. My specialist said I was clear of Lung cancer and infection which made me feel elated until I came home and googled. as the specialist said he did not want to see me for another six months, now I am worried if this is progressive what else should I be doing to slow down progressiion, I am a young nearly 65 years old sho has never smoked and enjoys life.
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I'm a 64 year old male, never smoked, no alcohol or drugs and just been diagnosed with UIP and it's scaring the c**p out of me with all I hear & read. Dr. took X-Rays & CT Scan and confirmed UIP and put me on several meds and breathing treatments. I'm in perfect health other than the fact that I can't breathe which sucks. Any ideas on the best way to take this new journey that I am now on? Robert in Louisiana
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I am 60 years old and have been unwell with severe breathless ness for at least 4 years. Have never smoked, taken drugs and don't drink. It seemed to start with a chest infection and then December 2014 was admitted to hospital with pneumonia many tests were done and was finally told I had a virus until October 2015 when I was told I had severe and rapidly progressing ILD. I was given 12 to 18 months to live. I am being treated now with steroids and told can now only expect palliative care. It is hard to live with and knowing I do not have long. It could happen at any time from what I have read. You just think how did this happen to me and how do I cope?
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Hello
I was just told that my CT shows I have ILD I have read a lot on the internet to research cause my doctor just said it was like have COPD. My doctor put me on oxygen while I sleep as he said I will die without it. (this based on my sleep study) and oxygen depletion.

I am sorry to hear you have this too I will keep you in my prayers, I will have many questions for my doc he has me on anti-biotic and steroids for inflammation right now

Have you found a support group
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