Patient Comments: Interstitial Lung Disease - Experience


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Comment from: Elizabeth, 65-74 Female (Patient) Published: October 05

I was diagnosed with interstitial lung disease eight years ago. A strange wheezing sound while breathing sent me to a lung doctor. He thought perhaps this was caused by my keeping birds as pets, which I have most of my life. Eight years later, I'm still wheezing and coughing, and moving about is very difficult; I'm always gasping for air. If I could retire I would, but I don't have the financial means to do it. I'm 67 years old. I am terribly exhausted all the time and life, frankly, is quite miserable.

Comment from: Breathless101, 55-64 Female (Patient) Published: November 16

My adventure with interstitial lung disease started 15 years ago with an ARDS (acute respiratory distress syndrome) diagnosis. Since then it has been hospital stays almost every year with what is described as a pneumonia type illness. On and off stays that included a ventilator. No one can tell me why I have this other than a possible autoimmune disease of some sort. I've also been diagnosed with diffused alveolar hemorrhaging syndrome where the capillaries around the alveoli bleed. Now I'm at the point of being short of breath with any exertion with my heart going in and out of atrial fibrillation and waiting on my next hospital stay. I'm fortunate that I can still work at the moment and thankful I'm still here.

Comment from: Paul, 65-74 Male (Patient) Published: March 29

I am a 32 year Navy veteran recently diagnosed with interstitial lung disease (ILD). All the things I was exposed to over the years could fill a book; everything from asbestos to jet exhaust. I've had colds/flu that went into pneumonia and other illnesses contracted in foreign countries. I had semi-annual sinus infections and was diagnosed and treated for asthma. It didn't help. Now it all makes sense. Unfortunately, it's too late to do something about it.

Comment from: DIANA, 55-64 Female (Patient) Published: February 29

I have always had shortness of breath in grade school when playing sports, and always teased because of my breathing hard. Interstitial lung disease was not diagnosed until 8 years ago with a biopsy. Recently I was put on oxygen to help but my level falls into the 70s with oxygen when trying to move around and work so oxygen is really not working and there is no other option except to sit and do nothing which is not healthy either. So I do what I have always done which is try to live my life and breath but as I get older it is a lot harder.

Comment from: brenda, 55-64 Female (Patient) Published: January 05

I have interstitial lung that developed from scleroderma. I have had this lung disease diagnosed about two years ago. I have shortness of breath especially when being active like chores and climbing the stairs in my home. I have had scleroderma for sixteen years. I am taking CellCept, but am not sure if it is helping. My doctor just told me to exercise because it could help me feel better. I hope this will be helpful to someone.

Comment from: [email protected], 75 or over Male (Patient) Published: August 17

I breathed 100 percent oxygen as a fighter pilot for over 25 years. I have recently been told that said oxygen is toxic and probably caused my pulmonary fibrosis (interstitial lung disease).

Comment from: kencsjr, 45-54 Male (Patient) Published: November 02

I am thinking about stem cell treatment for interstitial lung disease at the lung Institute. There are 5 locations throughout the country. I have heard good things about this treatment and it is affordable.

Comment from: Audrey, 55-64 Female (Patient) Published: April 21

I had tuberculosis as a child but when l started dealing with my past it woke up and for the past 8 years my interstitial lung disease been getting worse. I struggle for air, can't walk far, can never go upstairs, or sing anymore. It scares me because my worst fear is losing my breath and the next is, do l get chemotherapy, does it help, will it help. I cannot lift anything heavy l cannot hold a baby or do house chores. Yes l am scared but l guess you all are too.

Comment from: Missy, 55-64 Female (Patient) Published: September 22

In 2012, I began coughing, and the problem has gotten worse. I believe that I was exposed to black mold; due to a hailstorm my room leaked, and the wall behind my desk sunk in. However, when the repairs were done, no mold was found. I, however, found some under a curio that sat in the corner of my office. I removed, it, and replaced the carpet with a tile. I have been seeing a pulmonologist who gave the interstitial lung disease and asthma, but he refused to treat me for pneumonia, which I knew that I had. Finally, my primary physician prescribed some strong antibiotics, which helped get rid of some of the debilitating symptoms (a great tiredness). We have tried other antibiotics since then, and x-rayed my lungs, finding that the mass has disappeared. I use albuterol inhalers and liquid mist with a nebulizer. However, I continue to cough and spew phlegm that even catapults across my hand or handkerchief as I try to block the cough and protect others from germs and bacteria that it potentially carries. I am hoping to find a doctor who specializes in this disease and get some more aggressive help in fighting it.

Comment from: Old62Ford, 55-64 Female (Patient) Published: March 11

I have several types of arthritis and when coughing and wheezing started I was diagnosed with adult onset asthma. That came and went with severity. I had the hand held rescue and the medical nebulizer. Then I was diagnosed with COPD but I never have smoked, but second hand smoke yes, parents and my husband. I also asked about mesothelioma. I lived within 1 mile of both a pipe plant and Monsanto. Now it is interstitial lung disease because of my arthritis. At present I do not take any medicine for ISD lung disease.

Comment from: KatF, 65-74 Male (Caregiver) Published: February 02

My husband was recently diagnosed with interstitial lung disease. In the Navy he was exposed to metal fumes, asbestos, and Agent Orange. I'm sure one or all of these things caused this. Apparently, it's nearly impossible to tell exactly what caused it and it's never going away.

Comment from: Judy, 13-18 Female (Caregiver) Published: June 11

I have a niece who has been battling the past few months with this diagnosis of interstitial lung disease, after a biopsy. The only thing is she is only 15, full of life and not ready to give up. My sister received the news today that there was nothing else they can do for her. She is left with this possible deadly disease, 4 chest tubes in place, with not a candidate for a lung transplant, and doctors that are giving up and wanting them to face reality. Thank you for allowing me to share our story.

Comment from: dragon, 19-24 Female (Caregiver) Published: February 04

My 24 year old brother just unexpectedly passed away 2 weeks ago. He was healthy, happy and had no symptoms whatsoever of being sick. He went to his room around 3 pm to take a nap, which he did every day, and my mom went to wake him at 6 pm and he wouldn't wake up. He had already passed away and no one could revive him. The coroner said his lungs had fluid in them and they were full and to him it looked like pneumonia. But he wasn't sick at all! Is there a new strain of pneumonia that is fatal and has absolutely no symptoms!


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