Pulmonary Fibrosis Support Group

Diffuse parenchymal lung disease (DPLD), also known as interstitial lung disease, refers to a group of lung diseases, affecting the alveolar epithelium, pulmonary capillary endothelium, basement membrane, perivascular and perilymphatic tissues. The term DPLD is used to distinguish these diseases from obstructive airways diseases. Most types of DPLD involve fibrosis, but this is not essential; indeed fibrosis is often a later feature.

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  • nad71

    Ofev Review

    Hi there, anyone taking the medication Ofev?...I would love to get some feedback 
  • anjeliktr

    fever in PF

    My sister, 44 was diagnosed with non small adenocarcinoma 1.5 years ago and had a right upper lobectomy. She had 20 radiotherapy and 12 chemo.Now she's a PF patient of radiotherapy, but no cancer at all. She was almost dying 2 months ago with 40% saturation. She's been tethered to oxygen 16 hours a day since then.She has had fever for 4 days and antibiotics don't work. Does it mean she's...
  • jarca1

    New DS New PF

    I hope with the new DS that this Pulmonary Fibrosis board becomes more active than before.I have COPD (emphysema) & Pulmonary Fibrosis (CPFE) & would love to meet others that may have both diseases.Having both a obstructive & a restrictive disease is confusing to me & I would love to find others that have both to share experiences with.
  • ipfmoaner

    Ofev Efficacy

    Hey people, anybody here using Ofev? Any experience that you could share?
  • greenbayfan1

    Shortness of breath

    Hi everyone - I'm new to the group and not sure if I'm posting this to the correcct group. I've never smoked and my husband quit smoking about 8 years ago and I keep having random low pulse-ox (in the 80's). I've also had shortness of breath and dry couging attacks. My primary care dr ordered a PFT, blood work, and CT chest. Blood work came back fine, but PFT came back as saying "severely...
  • txkiki53

    Just told have fibrosis......

    Okay, what can I expect? Dr wants to do a ct in 6 months if worse, a open biopsy.Question, why wait? All the info u can give is greatly appreciated
  • danny50

    please need addvice

    Hi,Im Dan. hoping someone can give me some advice. I had a bad cough 4 years ago. I had a ct scan at the time and they said it was just mild scaring and it could come from anything and I was fine. a year later and up till now I still cough and have sob and get lots of colds and chest pains. My mom has pf and is 79 and in final stages of it. she was dx 5 years ago. her sister also died of it and...
  • nancymorgart

    memory foam mattress

    after searching for the source of the irritation to my lungs, I have realized that the trouble started right after we got memory foam products in our house. looking on line i see that thousands of people have complaints about respiratory problems, rashes, eye problems, dizziness, etc. when they have the foam in their homes. I want people to know that these might be the cause of their lung...
  • deleted_user

    Clinical trials - worth it?

    My husband was diagnosed with IPF a few months ago. His symptoms are already pretty severe - chronic fatigue and 24/7 oxygen.We have been offered clinical trials but that would entail a three hour round trip drive. He is 75 (I am 50) and he is comfortable riding the process out. I, of course, want to fight. Even though I am a Hospice provider it doesn't prepare you for when a serious illness hits...
  • jarca

    New to this board

    Hi,i was diagnosed in 2010 with COPD/Emphysema.My PCP said she "could handle it", put me on 02 & that was it.In 2012 i had a huge exacerbation & long story short, fired that PCP; got a new PCP & Pulmonologist.It was that Pulmonologist that told me i had Pulmonary Fibrosis on top of the emphysema.my last HRCT said i was "severe" in both diseases.I am a member of DS' copd/emphysema board & i found...
  • KyRhonda


    Has anyone been on this drug for IPF? What can you tell me about your experience? How long have you been on it? Side effects? Success? I am trying to get my mother into a trial for this drug. Any advice would be appreciated. Thank you!
  • I have something called constrictive bronchiolitis, bronchiolitis obliterans, or obliterative bronchiolitis. I have fibrosis of my bronchioles. Rare disease becoming much more common r/t soldiers exposure to burn pits. Think that I belong here. Have been a member of COPD support group. Anyone else out there. The only people with BO that I have found were transplant patients and those...
  • deleted_user

    Losing someone to IPF

    I originally wrote this as a personal message to a member of the forum; she recommended I post it to share it with others. This is my experience with very recently (and very quickly) losing a loved one to this disease.My sweet Uncle Bob, who was always like a dad to my sister and me (we grew up living next door to him, he never married or had children, he did everything for us!) was diagnosed...
  • deleted_user

    undiagnosed pulmonary condition

    Hi,My husband is experiencing symptoms of some type of interstitial lung disease. 2 CXR's in the past 2 months show chronic interstitial changes, lung volumes are extremely low. First CT of chest showed diffuse coarse interstitial changes. He was admitted to the hospital with hypoxia, PO2 of 52. He was sent home on home 02. We saw a pulmonologist who ordered a high resolution CT of chest. It was...
  • deleted_user


    Is anyone on this forum using this device? It is a non-invasive oxygen ventilator that enhances oxygen. The pulmonologist recommended this for my husband. We're looking into it, but I was wondering if anyone has experience with it. I have looked on line, saw the testimonials, but they appear to be sponsored by the maker of the device. Thanks for any help anyone can give me.