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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  • Abbie

    End stages of PF

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    FIRST POST....I hope someone is out there in the far distant galaxy because I am tired of talking to myself and googling EVERYTHING and anything I can on PF end stage.....quick preview....my mom is 82, diagnosed 10 yrs ago with Pulmonary Fibrosis (idiopathic). Excellent Doc. Started oxygen 5 yrs ago. Has been active as always until 3 mos ago. Current condition.....for the last month mom's oxygen...
  • DScience

    Are you an IPF patient in the Philadelphia region?

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    Design Science is an independent healthcare consulting firm based in Philadelphia. We are currently working on a project to evaluate a sharps disposal container that is intended to help track the adherence of injectable medication usage. Our goal is to gather feedback from potential users to help improve the usability and design of the new device. We are specifically looking for feedback...
  • DScience

    Seeking IPF patients in Philadelphia area

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    Design Science is an independent healthcare consulting firm based in Philadelphia. We are currently working on a project to evaluate a sharps disposal container that is intended to help track the adherence of injectable medication usage. Our goal is to gather feedback from potential users to help improve the usability and design of the new device. We are specifically looking for feedback...
  • nad71

    Ofev Review

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

    fever in PF

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    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

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    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

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

    Shortness of breath

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    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

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    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

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    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?

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    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

    4
    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

    Pirenidone

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    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!
  • ladybug2008

    constrictive bronchiolitis

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    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...