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Pulmonary Fibrosis

New discussion Join group Also known as Alveolitis, Cryptogenic Fibrosing Alveolitis , Extrinsic Allergic Alveolitis , Fibrosing Alveolitis, Idiopathic Pulmonary Fibrosis, Pneumonitis

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  • CherylH 2


    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)

    52 replies 1 vote Last reply
  • t3r3sa69 1

    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 am all...

    6 replies 0 votes Last reply
  • nedflys 1
  • ZeldJesus0827 1

    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. My...

    3 replies 0 votes Last reply
  • maggie96122 1

    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

    1 reply 0 votes Last reply
  • eric87817 2

    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...

    39 replies 0 votes Last reply
  • Maddie25 1

    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 a hotel...

    2 replies 2 votes Last reply
  • rene80906 2

    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 through all my...

    10 replies 0 votes Last reply
  • negrin 1

    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 ago. Although...

    1 reply 0 votes Last reply
  • Mrtyjon 1

    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...

    3 replies 0 votes Last reply
  • Guest M

    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...

    7 replies 0 votes Last reply
  • Guest M

    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...

    3 replies 0 votes Last reply
  • patrick51322 2

    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...

    16 replies 0 votes Last reply
  • pippinscat 2

    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 is the only...

    9 replies 0 votes Last reply
  • eric87817 2

    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...

    4 replies 0 votes Last reply
  • robert33305 1

    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 several...

    3 replies 0 votes Last reply
  • Guest M

    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...

    2 replies 1 vote Last reply
  • jessfl86 2
  • mollieh1092 1
  • epictetus1939 2

    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 for our remaining...

    1 reply 0 votes Last reply
  • teeninja 1
  • Busybee444 2

    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....

    0 replies 0 votes Posted
  • cathal79760 2

    Pulmonary Fibrosis good news

    I was diagnosed with pulmonary fibrosis about 3 years ago and put on oxygen. I was determined to overcome this. So I bought an oxygen finger monitor in Walmart go $50. I slowly started weening myself off oxygen while sitting down most of the day. I also started taking vitamin C 1000mc four times daily...

    1 reply 0 votes Last reply
  • AlfiesMummy 1

    To holiday or not to holiday

    My mum is extremely breathless and we are awaiting for her to be seen about oxygen therapy. The problem is I am supposed to be taking my mum and two aunties away on holiday at Christmas for a few days but my mum is saying she isn't going but I am to still take my aunties. I don't want to go without...

    0 replies 0 votes Posted
  • AlfiesMummy 1

    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. ...

    5 replies 0 votes Last reply
  • hugh71613 1

    IPF Symptoms When Using Pirfenidone

    I'm getting mixed messages about change in IPF symptoms such as shortness of breath, coughing and fatigue after a person starts using Pirfenidone.  Some articles say that there is little to no change in these symptoms.  However there a few interviews on the web where people say they have experienced...

    3 replies 0 votes Last reply
  • Alden 1
  • lesley12115 2

    fed up with coughing

    I was diagnosed with PF in August this year from a chest x-ray ! is this possible ? I'm 58 and it was a shock having been a health and fitness freak most of my life, luckily so far I'm not breathless, except if I try to ride up hill on my bike but my recovery is ok,  I'm sure this will change, but I...

    6 replies 0 votes Last reply
  • Queenie2000 1


    As an IPF sufferer I would welcome ideas on how to keep your appetite. I took the medication Perfenidone before for 3 years, suffering side effects. I am about to start Perfenidone again, and would welcome your ideas.

    0 replies 0 votes Posted
  • fab123 1

    41 diagnose with pulmonary fibrosis

    Hello I am 41 years Old, i went lask week to the ER for some pain in my lower body, thinking maybe were my ovaries, they thought could be apendicitis, but nothing there, the Dr make a CT scan, and saw something in my lungs, prescribe me some antibiotics and medicine for my sinus, nothing really bother...

    3 replies 0 votes Last reply
  • lesley12115 2

    Pulmonary fibrosis left lower lung

    Anyone out there know anything helpful ? Will it go to 2nd lung. I'm 58 and just been diagnosed my husband has dismissed it as just another menopausal problem. What can I say bury your head dear this is real. I'm a bit upset but I'll cope I have no one to confide in talk to about it without heart...

    18 replies 0 votes Last reply
  • pippinscat 2


    Can someone please help? Yesterday my husband saw the respiratory specialist after a wait of 13 weeks.  It has been confirmed that he has a mild IPF - does this mean it will develop into a more serious form of IPF?  He had an ECG, a blow test and bloods done while we were at the hospital and has been...

    8 replies 0 votes Last reply
  • WayneP 1


    I question wheather I actually have IPF. For @ 4years I have been coughing a lot when I am awake. I never cough when Im horizontal. The cough seems to start in my throte, and I rarely cough up anything. Within the last week I exerted my self and my Oxygen went from its normal @95% down to 72% at a pulse...

    1 reply 0 votes Last reply
  • pippinscat 2

    Still Waiting!

    Hi can anyone help on this? After a CT scan my husband was informed by this doctor that from the results he suspected that he had Pulmonary Fibrosis. He was told to phone for an appointment with a respiratory specialist - that was nearly 9 weeks ago and he is still waiting.  I've even phoned to make...

    4 replies 0 votes Last reply
  • epictetus1939 2

    IPF Coughing and GERD. GOOD NEWS

    I have just been diagnosed with IPF with a lot of coughing and abdominal pain.  I also have been treated for symptoms of post Nasal Drip for several years constantly having to cough up mucus from my throat. I went to an ENT consultant who told me I did NOT have PND and it was GERD (Gastric reflux).  He...

    5 replies 1 vote Last reply
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