Pulmonary Fibrosis News Forums Forums Welcome Lounge How did you find you had fibrosis?

  • How did you find you had fibrosis?

    Posted by saurabh on June 23, 2023 at 12:02 am

    Essentially, I am trying to figure out how this disease progresses, I understand it is largely variable based on reading people’s experiences.

    But how did you find you had fibrosis? Was it a accidental check up at gp? Or was it a major acute exarcerbation? If so, was there scarring in lungs present before you had the episode, and the episode merely hastened the progression?

    I want to know as going to  a CT scan (major diagnostic tool) isnt something we just go to casually.

    Sheila Curran replied 2 weeks, 3 days ago 31 Members · 31 Replies
  • 31 Replies
  • Millie

    Member
    June 27, 2023 at 2:35 pm

    I found out by accident. I was hospitalized for another problem and they found out that my oxygen was low. They did a chest x-ray and found the scarring. However, my GP did a chest x-ray 5 years ago for another matter and it showed up then but I was never told about it. These doctors should be held accountable about these things. If I had known then, I know I wouldn’t be on oxygen now.

    • sandra-gray

      Member
      July 6, 2023 at 2:46 pm

      Had acute breathing issues, fever,etc.   when I was out of town visiting my physician daughter and urgent care diagnosed the X-ray as pneumonia. Antibiotics didn’t help, coughing continued and finally put on anti fungal for possible histoplasmosis.  That was likely since I have a small organic farm and keep chickens and goats. CT scan several months later in 2013 showed mild fibrosis.  Didn’t see a pulmonologist until last year when I was having shortness of breath and using O2 with exercise.  A CT scan showed it had definitively progressed and was given that fatalistic diagnosis of  the very short life span.  I rejected that and prayerfully took a proactive approach and now take  several herbal supplements recommended in a Chinese Medicine treatment, began doing breathing exercises regularly and joined a Yoga class.  I’ve ditched the O2 and now walk/hike several miles a day.  Celebrated my 75th birthday in March by completing a half marathon.  Cancelled my CT follow-up scan  in May because I feel well and think radiation exposure might upset the apple cart.
      Best of luck to you on this journey and try to stay positive!

      • scot-m

        Member
        July 10, 2023 at 9:21 am

        Would you mind sharing what herbal remedies you are taking?

  • adele-friedman

    Member
    June 27, 2023 at 3:04 pm

    I became very short of breath heading across a parking lot into a store. A couple days later, I was diagnosed with pneumonia in an urgent care clinic. I thought it was weird I had no symptoms other than SOB because I thought pneumonia involved more than just that. A few days later, no better, I went to my primary care doc and got another short course of antibiotics. Came back to primary care and short walk test made them decide I should go to the ED at local hospital. Doctor there diagnosed me with pulmonary fibrosis, based on the lack of resolution of the “pneumonia”, which I’d never had, and xray he took. He told me to call local pulmonology appointment that day. It was Dec. 21, 2021 and the soonest appointment was Feb. 1, 2022. Fortunately, I was able to get into an ILD center two hours away a few days sooner. I continue there, and basic care like PFTs and walk tests at the local pulmonologist.

  • linda-maguire

    Member
    June 28, 2023 at 11:44 am

    I had had a chronic, dry cough for about 5 years, which I attributed to allergies.  When my husband pressured me to have it checked out, I talked to my PCP during a physical, & she sent me for an XRay.  That showed what appeared to be pneumonia.  I was treated with an antibiotic & sent for a CT scan which showed the fibrosis.  That was in 2015.  My PCP then sent me to a pulmonologist, who immediately told me I had IPF.  After numerous tests for an autoimmune disease (because I had no typical risk factors) and a barium swallow to rule out GERD, I learned that I have “silent” reflux (no symptoms), which has been thought to be the cause of my fibrosis.  I now treat the GERD, but have been stable with only mild progression of the fibrosis since that time.

  • kimber-bollinger

    Member
    June 28, 2023 at 12:26 pm

    I had a hip replacement in 2/7/23  and several days later went into respiratory failure. 34 days in the hospital came out with several dx and still do not have  definite dx but all is pointing to IPF.  Had high resolution CT yesterday and hopefully it will tell pulmonologist more.  Doing breathing rehabilitation and taking several different herbs that I feel might be helping.  Life changing disease for sure!  On O2 full time and prednisone only right now.  Have come a long way but this road is a long one.

  • temple-mayo

    Member
    June 28, 2023 at 12:59 pm

    I was scheduled for a bilat hernia operation and had to have a chest xray for pre-op.  Bingo…

  • stan

    Member
    June 28, 2023 at 12:59 pm

    Mine started with a bad cough, the doctor gave me antibiotics plus steroids, none of it helped eventually I was sent for a normal scan which showed something amiss then an mri scan this showed that I had pulmonary fibrosis, diagnosed about a year ago now I feel ok but oh so tired.

  • carlene-a-chamberlain

    Member
    June 28, 2023 at 12:59 pm

    Good morning, I am 68 years old and had been coughing for a number of years, since maybe 2010. I’d had a CT scan of my chest due to the coughing about 3 years ago, GP thought I had heart issues, though clearly, seeing the CT scan now, the lung scarring was present but totally missed.  My breathing continually worsened. I was diagnosed  at Kaiser with asthma. Finally, October of last year I begged to see a pulmonary doctor. He looked at the old CT scan and told me he wished I had asthma, that I had IPF..he sent me to get another CT scan, from the top of my head looking down into my lungs. Mine at that time was moderate status. Right lung being worse. I was stunned and thought I would be dead by Christmas.  I live adjacent to a very large chicken ranch, a home I purchased in 2006. That may have been the cause, no one really knows.  I am now on 02 24/7. I purchased an inogyn machine to use while out shopping. I was denied a lung transplant due to liver disease , very mild,  but enough to disqualify me.  It’s taken me months to accept this death sentence, and not sure if I will ever accept it.  I thought I was very proactive with my health, but this has taken me to my knees. Do get the CT scan, and see a pulmonary doctor, start pulmonary rehab to help as they taught me, muscles use less oxygen.

  • camila-lopez

    Member
    June 29, 2023 at 11:19 am

    Since 2015, I noticed that every time I had a CT Scan for back pain, or when I was at Mayo Clinic for atrial fibrillation, the findings on results said mild fibrosis lung disease.  Not once any doctor mentioned that or suggested treatment.  In 2022 a cousin mentioned that my aunt’s cause of death was fibrosis so I made an appointment with a pulmonologist.  To my surprise, I was diagnosed with IPF.  My CT scans now say that my lungs are extremely damaged, but unless it is divine intervention, I don’t have symptoms.  No coughing, no out of breath, 02 level is always 99 or 98.  Taking Esbriet for a year and the fibrosis is not advancing but the side effects are brutal.  I hardly can tolerate the 9 pills a day dose.

  • steve-mclean

    Member
    June 30, 2023 at 12:51 pm

    Mine was entirely by accident and only occured in February 2023.  We were in Maui and my wife came down with pneumonia.  On returning home and caring for her I went back to the gym and had shortness of breath.  My PCP diagnosed pneumonia even though no fever and an x-ray.  The x-ray results among other things diagnosed mild scarring,  Drugs didn’t work so I went to ER and they took CTscan that also showed scarring .  In neither case was a pulmonologist advised.  I got tired of the visits with no results I checked myself into the hospital and finally saw a pulmonologist and after reviewing a second CTscan mentioned Fibrosis and put me on some inhalers which did nothing.  Got lucky and got myself into the Banner Lung Institute for care in Phoenix and have had all the blood work and functional testing plus the HRCT.  Clearly have an autoimmune problem which likely caused the scarring.  Chasing that now.  This seems to be a common problem where the X-Ray or CT reports show scarring and it gets ignored by most physicians.  Not taught in med school?

  • roger-cecil

    Member
    June 30, 2023 at 5:45 pm

    <p style=”text-align: left;”>I found mine quite by accident.  During my Wellness Check (old people’s Physical) in 2021, the hospital offered a special for $99 for a CT scan of the heart to check for problems.  When the scan results came out, it was noted that while my heart was fine, they detected an increase in scarring of my lung tissue compared to a CT scan that had been done on my heart (showed lungs also) in 2016 for AFIB.   They recommended that I see a pulmonologist, which I did, and thru further tests and a biopsy they determined that I had IPF.  They, then, determined thru blood tests that I had GPA Vasculitis that they believed was the cause.  This diagnosis was later disproved thru later blood work months later, and the root cause was believed to be long term use of Amiodarone for my AFIB.  As of late, other than some shortness of breath, I feel pretty good.  I try to exercise thru walking and I have really cleaned up my diet.  Like others suffering this insidious disease, I’m taking the recommended medications (OFEV and low dose prednisone), vitamins D3, C, Calcium and Zinc) and just living my life as normal as I can.</p>

  • chris-lynch

    Member
    July 4, 2023 at 12:39 pm

    <p style=”text-align: left;”>By accident. Minor cough and X-ray by my GP.</p>

  • phil-sasser

    Member
    July 5, 2023 at 11:26 am

    I was having sinus problems in 2014 and ultimately was referred to an allergist. During the physical exam when he was listening to me breathe with a stethoscope he noticed a faint sound like the crinkling of plastic (his words). He referred me to a pulmonologist who did a CT-scan and PFT. Bingo! He told me I had 3 years left at the most. I’m still kicking, just not as high as I once did. I think it would be unusual for a primary care physician to pick us on the subtleties of the symptoms. You have to have a high resolution CT-Scan for the diagnosis of PF to be confirmed. I wish you well. May God be with you.

    Phil

  • jan-cohen

    Member
    July 6, 2023 at 1:59 pm

    Strictly by accident.  We lived in the country in a log house with a wood burning furnace and though I used to cough all winter I just thought it was because of the wood smoke and never realized what it was doing to my lungs.  After we moved to the city I went one night to the ER with chest pains thinking it might be a heart attack.  Of course, they took X-rays and when my doctor saw a spot in the lung area she advised me to see a pulmonologist.  He diagnosed IPF.

  • gordon-b-sandmire

    Member
    July 7, 2023 at 2:57 am

    I had a spontaneous pneumothorax in 2014. They reinflated the left lung three times but it wouldn’t stay inflated so they had to do a Pleurodesis. It was then they diagnosed IPF. Down hill since then.

  • carl-stidsen

    Member
    July 7, 2023 at 8:09 am

    I’d been having breathing problems for several years , and often ran out of breath trying to walk as fast as everyone else and keep up with tour groups . (I don’t exercise, so I figured I was just out of shape ). About 7 years ago, I went to two Veteran’s Reunions in Wyoming ( 6,000 feet above Sea level ) and CO (5,000 feet ) in sequence, I was really dragging – thought I had pneumonia . I cut the last meeting short and drove back east (and to sea level). I felt a lot better . A few months later, I took a flight to Europe ( cabin altitude 8,000 feet) and back and had a very difficult time breathing both ways . So – after returning to Sea Level USA,  I finally  called my PCP. He had me get an X-Ray , then immediately sent me to a pulmonologist (walk test , breathing test, etc.) . He diagnosed / confirmed and he advised me I had IPF and probably had had it for several years. And gave me a five year Lifetime estimate.  My Permanent Handicapped parking hanging tag arrived shortly thereafter. And my Concentrator shortly thereafter , too. That was five years ago. Moral – Ignoring all the warnings did not make the problem go away .

  • scot-m

    Member
    July 10, 2023 at 9:21 am

    I had pneumonia. GP took an X ray of my lungs and said something looks funny here. We went to Mayo Rochester and saw a pulmonologist who diagnosed IPF.

  • jerry-fussell

    Member
    July 11, 2023 at 9:12 am

    During my biannual physical, they discovered an anomaly in my chest x-rays which turned out to be IPF. I have had asthma all my life and I have also taken up woodworking as a hobby, and the doctor told me it was possible the combination has caused the IPF. Right now, the doctor says the fibrosis is under control and I my breath analysis is back to normal. The bad news is I will have to take Ofev the rest of my life.

  • john-styles

    Member
    July 11, 2023 at 10:28 am

    I do pft tests to track  progressing.  How long you have really depends on your pft test. Some people will say they had it 10 years, some 2 years, etc,  It depends on how much lung function you had when detected. I had 50% and noticed when I breathed in it felt like I was in a Smokey environment.  The next person may tell you they have had it for 12 years but you need to know the pft score, they probably had 90% of lung capacity. This is my 7th year, no drugs but not much lung left.

  • patricia-fox

    Member
    July 11, 2023 at 2:19 pm

    In 2014 I started having nonproductive cough – went to a pulmonologist recommended by my PCP.  After being diagnosed with GERD, asthma and allergies over the course of 4 years I finally got a referral to a pulmonologist at UCSF. I had had a few PFTs and a CT scan during the time with the original pulmonologist.

    When I saw the pulmonologist at UCSF he recommended another PFT, 6 minute walk test and high-resolution CT.  In 2018 my case was presented to the ILD team at UCSF and while my pulmonologist felt strongly that I had some type of ILD he recommended a lung biopsy.  I knew it was a risk but felt that after not having a diagnosis for 4 years I was ready to take the risk.  The biopsy was conclusive that I had IPF.  5 years later I am still here!  I tried both of the antifibrotics but had severe side effects mostly diarrhea multiple times a day and after losing close to 50 pounds (which I did not need to lose) I stopped the drugs and am seeing minor decreases in my PFT but not enough to consider supplemental oxygen yet.

    Good luck with your journey!

  • teri-kerwin

    Member
    July 11, 2023 at 2:23 pm

    Hi Saurahb,

    I thought I had “Long COVID”, so I went to see my GP. He advised me to get checked by a Pulmonologist. One X-ray later, I was diagnosed with Pulmonary Fibrosis. This was in August, 2020.

  • kim-morrison

    Member
    July 11, 2023 at 4:36 pm

    My mom, her sister, and a cousin had it. When I had developed a chronic dry cough I made an appointment with the pulmonologist and her recommended a CT Scan. It showed moderate pulmonary fibrosis. That was in 2019

  • Stephen Shepherd

    Member
    July 16, 2023 at 9:04 pm

    In the summer of 2020, I was doing exercise after knee surgery, and I noticed I was getting short of breath.  I did not go to the doctor until the fall.  They did a chest X-ray, in November but it did not show lung disease.  I was given some meds to help, but it didn’t help, I then had a Pulmonary function test and then another chest X-ray. It finally showed I had Pulmonary Fibrosis. I then went to Pulmonologist who ordered all tests to determine what the cause might be.  All tests were negative, which meant I had Idiopathic Pulmonary fibrosis (no known cause).

    I then went for a second opinion.  He agreed with the diagnosis, and he suggested I start on Ofev.  I have been on Ofev ever since, with no side effects.  I also had a chronic cough. My doctor ordered Hydrocodone-chlorphen ER susp, generic Tussenex.  Medicare does not cover cough mediciene.  I found good prices with GoodRx.

    Ofev is expensive, but you can get financial help.

     

     

     

  • markmaron

    Member
    July 19, 2023 at 9:22 am

    Diagnosed in 2016, winded all the time and coughing, my primary told me to see a pulmonologist and had c-scan done and BAM that was it. Basically went on with my life normally until mid 2019 when i started to get worse after getting the flu and ended up going on Oxogyn. 2 liters, Now on 6 at rest and 8-10 with activity and exercise and on the transplant list, so from 2019 to today it progressed rapidly and on OFEV also now 2 years.  So be it….we hope for the best every day!..

  • Larry70

    Member
    December 15, 2023 at 6:27 pm

    I’m 70 and also found out by accident, a HRCT done for my heart that showed PF. I then got a referral for a pulmonologist who didn’t yet give me a diagnosis of IPF as I wasn’t symptomatic and PFTs are normal. But he did say the fibrosis seen on the CT was consistent with IPF. He said it was still relatively minor and that it might only progress slowly if at all. However, he will recheck the PFTs and CT in 3 months and if shows any progression of the fibrosis – he might start me on an anti-fibrotic. The repeat HRCT that is specifically for the lungs will be a better view as my previous CT apparently didn’t show it as well.

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