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Pulmonary Fibrosis

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

Can you help? Discussions needing a reply

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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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  • 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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  • 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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  • 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 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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  • 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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  • 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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  • 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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  • Crytogenic fibrosing alveolitous. Not sure if ive spelt it tight

    My mother died from this aged 73. Was tolf by gp its not genetic, a few years later her sister died from the same disease aged 74. 2 years ago her younger sister was diagnosed with it and this week her other sister has been diagnosed with it. 4 sisters all with the same non genetic disease. What chances...

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  • Newly diagnosed EAA

    I have just been diagnosed with EAA after being treated in hospital for a month with asthma. Turns out I do not have asthma (kept telling them the inhalers did not work!) and not sure if having EAA is better or not. My son had a pet rabbit for his birthday in August and I have been allergy tested and...

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  • Extrinsic allergic alveolitis

    I have just received a diagnosis of EAA after a VATs lung biopsy. It all began with a cough which I had for a few years and then I began getting more and more breathless. After checking for a fungal infection of the lung and then sarcoidosis the biopsy seems to a definite diagnosis of EAA. What is more...

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  • Pulmonary Fibrosis

    My brother whos in his early 70s has been diagnosed with pulmonary fibrosis. He actually is currently totally symptoms free. He has no cough, no weezing, no breathlessness. This problem was discovered by accident during a routine checkup for his hypertension. The doctor heard a velcro sound in his lungs...

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  • Information Please

    Hi - I hope there is someone out there that can help!  My husband was diagnosed with IPF last year (he is 72). He had a respiratory test at Arrowe Park Hospital in December and the results he was given was 80% in one lung and 75% in the other.  He was then referred to Aintree Hospital which...

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  • Poked, prodded, pestered.

    Here I complain about something that I really am appreciative of. It is the pre-lung-transplant evaluation process. This was quite and exercise. I went to Stanford Medical Center (Palo Alto California) last week (Mar 6 -9) both with trepidation and yet resigned to simply do whatever they put in front...

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  • Tomorrow is the HRCT scan

    I have had declining health issues for several years and the doctor believes that IPF maybe the cause. I'm in Florida my breathing has become labored (on oxygen part time) and I have episodes of waking up gasping for air and it's very scary. I also underwent Rituxan chemotherapy for kidney disease...

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  • cryptogenic fibrosing alveolitis

    My father died of cryptogenic fibrosing alveolitis 10 years ago and it appears that the medical profession are still no nearer with answers than they were then. Intially my dad was diagnosed with asthma, it wasnt until he went private for another opinion that he was diagnosed. He was put on high doses...

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  • Magnetic bead implant for GERD and IPF

    I understand that IPF can be caused by microaspiration of stomach acid due to reflux disease (GERD).  Has anybody tried a magnetic band implant to control it? It could reduce coughing and mucus  it seems to me to be a very clever idea an relatively safe.  We could enjoy wine and coffee...

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  • Lung Sarcodosis

    Hi I am 38 diagnosed with lung Sarcodosis which also effects my eyes when I 28. In the last 10 years I have had in and off flare ups. Currently I have a flare up with iritis. I am on steroids for the iritis and lungs. The last year I have had chronic fatigue with flare ups. The fatigue is so dibilatating....

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