Skip to content

Pulmonary Fibrosis

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

All discussions in this group

Next
  • 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)

    Last reply
  • PPFE

    Hi All, I am recently diagnosed with PPFE in Australia. I was told that 60% of my lung capacity is already reduced and I may need a transplant in next 5 years. Doctors believe it could be due to some autoimmune condition - exact autoimmune disease currently they are not sure about. It all started with...

    Last reply
  • 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...

    Last reply
  • Piriton while on Xarelto

    I suffer from severe eczema and wanted to know if taking piriton or other antithessmines is ok while on thinners. Am breaking out and not sleeping well.itchibg and bad blisters.any advice will b appreciated

    Posted
  • Have a question about Fibrosis in the lung.

    I have mild Copd with mild asthma. I was to 14 mths ago. Went to see a new dr. Did a cat scan and said I have a little Fibrosis in my lung with calcium deposit in my heart valves. He put me on Lipitor 20 mg. I asked about the fibrosis because i have aspirayed with reflux. He didnt seem concerened....

    Last reply
  • ESBRIET

    Has anyone with IPF had bad depression on Esbriet? I had to discontinue Ofev & have been on Esbriet for 3 months. The depression is terrible and so I had to lower the dose! This worrries me. Anyone else have this problem? God Bless You All!

    Last reply
  • Ipf and lung transplant.

    My husband was diagnosed with iPF 2 years ago and his lung function recently declined. Has anyone had a lung transplant for IPF and if so how did it work out?

    Posted
  • Recently diagnosed with IPF

    My father has been diagnosed with ipf and seen a lung doctor. His lung doctor said they can't do anything else and referred him to mayo clinic. Mayo clinic would t take him because we are out of state and they won't bill out of state insurance. We live in southeast Kentucky and are 14 hours from...

    Last reply
  • 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.

    Last reply
  • Future health care needs

    Hello my name is Heather, and I am a respiratory therapy student. I am here to determine what PF patients and/or family member would like to see in their respiratory therapist. What is something that could be improved? What specific needs do you have that you feel need to be addressed? Any suggestions...

    Last reply
  • Tina Street

    I was diagnosed with ipf 6 years ago and I want to know if anyone can enlighten me to the symptoms of the end stages im on no medication and have been through numerous chest infections fatigue depression the whole works really but of late cant seem to shake infections off and coughing has fractured my...

    Last reply
  • Pulmonary Fibrosis

    Hi I was diagnosed with pulmonary fibrosis 2 years ago but have had the symptoms I feel for longer. I have recently had a lung xray due to poor health which revealed that my fibrosis had got worse, apparently there is a new medication that can only be prescribed by a doctor from the local respiratory...

    Last reply
  • 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...

    Last reply
  • 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...

    Last reply
  • 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

    Posted
  • 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...

    Last reply
  • 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...

    Last reply
  • 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...

    Last reply
  • 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...

    Last reply
  • 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 //  

    Posted
  • 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 ..

    Last reply
  • 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....

    Last reply
  • 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...

    Last reply
  • 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...

    Last reply
  • 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. 

    Last reply
  • 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...

    Last reply
  • 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...

    Last reply
  • 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...

    Last reply
  • 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...

    Posted
  • 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....

    Last reply
  • 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?

    Posted
  • 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...

    Last reply
Next

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.