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Pulmonary Fibrosis

Also known as Alveolitis, Cryptogenic Fibrosing Alveolitis , Extrinsic Allergic Alveolitis , Fibrosing Alveolitis, Idiopathic Pulmonary Fibrosis, Pneumonitis

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  • PPFE

    Has anyone been diagnosed with pleuroparnchymal fibroelastosis (PPFE). Pulmonologist and radiologist think I might have it. Not much written on it - fairly new to the medical community, I believe. Prognosis doesn't sound good. Thank you. Sherry (USA)

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  • this horrible disease

    This is a horrible, debilitating, excruciating illness to have to go through.  I watched a loved one suffer and eventually end life because there is no cure or no hope...everything that they do is only temporary.........there are so many complications with this disease that it is really unbearable............the...

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  • How do you get diagnosed with IPF?

    Hi, I am a 25yo girl. A week ago, I started having cough with very thick phlegm that's hard to expel and also shortness of breath. I went to the ER and they had me done the chest x-Ray and they said they saw bronchiectasis in both my lungs and asked me to see a lung specialist. And so I did. The...

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  • Hello Everyone,

    Still have not seen my Pulm Dr. I am seeing him this coming week, I have not been feeling so great, But wanted to check in with you all. Hoping to get some real answers . Have a Nice weekend... Best to everyone,, Nancy

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  • What's going to happen to me?

    I live in the Monterey Bay in California, so hope I can crash in on the UK folk here. It seems like a nice group. I was diagnosed with IPF around July of 2016. I am 67 years old. My condition went from no symptoms to a horrible crash after a lung biopsy, and a kind of recovery but with the certainty...

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  • Hey Again Everyone, Is there such a thing ?

    Hello Again Sorry to be a Pain, Is there such a thing as Fibrosis. & Not PF ? or IPF ? Still have not seen Pulm Dr. Only my heart Dr yesterday. Hes says Its Dif ? ANYONE ?? T/Y & again, The Heart Dr did say he noticed how tired Un able to raise my arms & weakness. So Still no real Label if...

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  • Restrictive pattern PFT no scarring on CT scan?

    Hi my PFT shows a restrictive pattern have had 2 tests that measure consistent: %Pred  FVC:  68 FEV: 69 FEV1/FVC(%) 100 TLC: 81 My pulmonary doctor ordered a CT Scan and the radiologist and pulmo both said they don't see fibrosis or COPD.  There was mild diffuse bilateral bronchial...

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  • Hope this finds everyone doing A.O.K

    Morning Everyone. I still have not spoke with Family. I'm not sure what to tell them, My Dr. has yet to tell me whats on the radioligist report, other than the nodulas & it was the receptionest that told me that !! I ask her about the P.F she just sounded exasperated so, I said to myself Screw...

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  • Is there a Dif

    Hi Everyone, I saw my heart Dr. yesterday, He said PF is dif than fibrosis in the lower lungs . Can that be true ?? Still waiting to lab this I guess. ALL OPINIONS WELCOME  Thank you everyone, STILL wondering .. Best wishes & Happy New Year //  

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  • Not sure if I'm posting in correct group ?

    I wrote a discussion this morning, about how or if I should tell my Family, Will everyone please read it, I posted it under Pulmonary Fibrosis. T/Y I'm very tired today & in a lot of pain. Thank you ALL, Best wishes. I Value every ones opinion ..

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  • Need your opinions

    Will you all give me your opinion on my problem ? It is this.. Should I tell my Family about the P.F etc ? Not sure How ,If or when to tell.I don't want them to worry about it much / Also. I understand that when a person gets to the end of it all, there are some drugs to help you just go to sleep....

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  • I'm confused Now !!

    Hi everyone, I have been waiting to hear from my Dr since I had a Low dose Cancer screening CT on the 8th of this mo. I decided to call his office today. I asked that he take a look & wondered if he wants to see me. The receptionest called back & said he review the report & said.I had a nodular...

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  • Because of the Holidays

    I have not told My Family what is going on. I feel it best. Have not seen Dr yet for a plan on whats next for me, This was my first CT so I read the results my self, It shows PF & a few small noduals 4mm. I have COPD & a racing heart hardining of the arteries & alot more, Just wondering how...

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  • Here's my experience since Feb of 2011

    I'm still fairly active although I've been in hospice since the first of December. I haven't taken any medications to treat my IPF although I did start taking  medofinil for fatigue right after the biopsy confirmed the IPF.  I believe that exercise is the key to my longevity. 

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  • I'm not understanding

    So I have been reading a lot, & Thank you all for your input, Very helpful. I'm not exactly sure what's going on with me, Only read what My CT said, Seeing my Dr soon in hopes he will tell me how long I have had PF & what's next. I am learning a lot here, But Have to do research on...

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  • Pulmonary Fibrosis

    My name is Teresa. I have just been told that I have P.F. I am only 47 and have a 5 year old son. They say I have had it for the past 5 years. So my time is running out. I'm so scared and the thought of my son growing up with out me is killing me inside. I'm just looking for some support as I...

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  • Does weather affect symptoms - help for my horse please..

    Hello all I am hoping some of you poor sufferers may be able to give me some information.  My beloved horse has a chronic lung disease and with veterinary medicine being so far behind human medicine - we have never reached a diagnosis (I am also a vet as well as her owner).  I never stop reading...

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  • Are you taking the miracle drug Modafinil?

    The two drugs but I consider vital to my quality of life, are Prilosec and Modafinil.  My diagnosis came after  numerous appointments with specialists trying to find cause of chronic and severe. Given my heart history it was assumed to be blockage until a heart cath showed all my sextuple bypasses...

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  • IPF - are there any inhalers that help?

    My mum is 88 and was diagnosed with IPF about 3 yrs ago. This past year she seems to have got progressively worse. At the moment she is on both Prednisone and Amoxycillin as she has had a lung infection. The dr gave her a ventolin inhaler to see if that helped but it hasn't made much difference....

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  • Travel to Las Vegas

    Hi, have PF, and have been offered a free trip for a week to Las Vegas staying at the Venetian.  Would like to travel while I can but is Vegas a smart place to go because of the very relaxed indoor smoking laws?  Any advice would be appreciated.

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  • Lung expension

    I had a lung surgery of emphyma and after surgery my xray showing the blunting .i want my lung extend till the end point of diaphram.plz suggest wht to do?

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  • Pulmonary Fibriosis

    Hi All, I had shortness of breadth and dry cough and visited a pulmonologist. Took a syprometry and CT SCAN based on his suggestion and syprometry test came clean and the CT SCAN was also fine except for the mention of "Fibrotic bands in lower lobe and lingula" I'm totally worried if...

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  • New diagnosis

    I have been getting increasingly breathless over past 6 months. I attended my gp 4 weeks ago and she organised a breathing test. The upshot of this is it has shown i have a restrictive lung problem . I am awaiting an appointment at respiratory clinic . My father died from pulmonary fibrosis 5yrs ago...

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  • Pulmonary fibrosis

    Hi everyone Im 42 I've been diagnosed with pulmonary fibrosis this year...... How long is my life expectancy I'm at mild.... My heads away not knowing wether my children will loose there mum before 50.....   

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  • Bummed Out & Confused About Pneumonitis

    In mid-July I went into ER because I had about a month of strange breathing sensations and I finally had enough anxiety to warrant going in. I'm not sure how to describe other than it's a mild form of air hunger/shortness of breath that comes in waves. Sometimes I barely feel anything, sometimes...

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  • My Long & Winding Road To A Diagnosis Of PF

    Early last year I was diagnosed with Severe Pulmonary Fibrosis and during all the many battery of tests Borrelia Burgdorferi (Lyme Disease) gave a 'positive' result which along with the PF and my other unhealthy problems rather rocked the original diagnosis I was given of M.E./CFS some 15years...

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  • Uh oh, I googled

    My mum (62) has had some trouble with breathlessness for about 4 months now. Initially she was told she had adult onset asthma and given inhalers. They didn't work so they tried a different inhaler. Again, no luck so she was prescribed a 2 week course of high dose steroids. Again, no relief. She...

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  • Have IPF and outside medicals no one else knows

    Hello all I was diagnosed with IPF 20 months ago. Am married and have grown up children. A t the time I decided to keep it to myself and told family there was a problem and consultant was just meeting me regularly to ensure I didnt get worse. Last three visits have shown no deterioation . I am on OFEV...

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  • I just found out that my husband has a pulmonary fibrosis

    I just found out yesterday that my husband has a pulmonary fibrosis. There was an annual medical examination at their office so He then went to the clinic and got checked. The result was made last march 22, 2017 and up until this month, he had'nt had any symptoms and he even gained weight instead....

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  • Taking a new medication, does anyone use this?

    I have had COPD with emphysema for over 7 years. I am on oxygen 24/7. Could not take Ofev or Esbriet due to the horrible side effects. My pulmonary doctor just prescribed Spiriva and I would like to know if anyone else uses this and does it help your symptoms? Thanks

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  • Fibrosis of lungs

    Hi all, I'm still waiting for a hospital appointment so still not diagnosed but my breathing is severely restricted. My breathing has been getting worse now for over a year but as I'm asthmatic I put it down to the changeover from Seretide to a generic form. In February however as I was leaving...

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  • Why has my doctor said nothing

    Hoping to get some insight. I live in South Africa. I was recently hospitalised for unrelated reasons and had a CT scan done. The radiologist wrote "Parenchymal Bands within the lung bases are noted". My doctor never mentioned anything about this. I only realised this now as I'm going...

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