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    • #30427
      Martha McAdams
      Participant

      Hello all…. I have recently been diagnosed with IPF. Have had ct scan, hrct, pft, 2 loop volume tests. Met with rheumatologist and all underlying autoimmune diseases ruled out. Hence the dx of IPF. I have no symptoms whatsoever. Hrct shows honeycombing. Yesterday my pulmonologist ( at Loyola) surprised me with recommendation for a lung biopsy. I don’t understand why I would need that if it’s IPF? I know I should have asked him but I was so stunned about it I couldn’t think straight. Wondering if any of you have this sane experience? I appreciate your feedback

       

    • #30436
      Christie Patient
      Moderator

      Hi Martha, a lung biopsy would be to get a definitive confirmation of the diagnosis of IPF. Several things can appear to be IPF on CT scans–hypersensitivity pneumonitis, other interstitial lung diseases. A biopsy isn’t pleasant, but having a for-sure dx could bring peace of mind. I think @donsalzbergmd is an advocate for going it from his experience. You will find others in the forums who would advise against it… ultimately it’s up to you and your doctor.

      • #31580
        Amber
        Participant

        Hi..perhaps because its still idiopatic..so you can get a chance to understand why you have it? So if lucky you can stop the cause..as long you dont know the cause there wil not be a change…and fibrosis keeps going..( thats what i understoud about my own case)

    • #30468
      Catherine Leonard
      Participant

      Martha,

      Not knowing what part of the country you are in or health care options available I’m not sure this will be helpful, but this may be of interest.

      Having had two lung biopsies the traditional way (needle through back into lung), and a robotic bronchoscopy/biopsy, I would ask if it is possible to secure the latter.  The Robotic Bronchoscopy/Biopsy does not pierce the lungs (goes through the throat) and is safer than standard biopsy.  It can also go deeper into lungs than standard bronchoscopy and be directed to a specific site.  I had never heard of this until receiving care from City of Hope in Southern California for dual issues: lung cancer/nodule and IPF.  It was pretty amazing and doctor reported he was able to secure several good samples directly from targeted area in my lower right lung.

      Catherine

    • #30478
      Jofac O’Handlin
      Participant

      Hi Martha,

      Like you, I had a preliminary diagnosis of IPF by X-ray and CT scan. That was in  August 2013. Under the NHS system in tne UK, referrals and consultatios tend to proceed at a pedestrian pace. I was offered a biopsy about a year later.

      I was, as you are, faced with the choice of  leaving well alone (acceting the diagnosis) or going for an invasive procedure with the attendant risks. It was put to me that there is a family of lung issues under the expression IPF. As I like ‘to know’, and on the retional that I would add a miniscule amount to the knowledge of the disease. It would also confirm if the the IPF was associated with exposure to asbestos, having worked as a young man in power stations. I decided to have the procedure,  a so called wedge section. This took place in December 2014. My results confirmed in March 2015 indicated the worst of the apparant several options, but no asbestosis.

      I will also say that I may have a genetic propensity for IPF, as an older sister died of the complaint at the age of 85.

      I was then prescribed OFEV (Nintedanib), which I have taken for over six and a half years. My physical abilities have slowly declined over the years, and whilst I have oxygen prescribed I am able to proceed with only occasional O2 use.

      This may not be helpful, but it is my story, so far!

      All the best,

      Joe

    • #30481
      Linda Maguire
      Participant

      Martha,

      As stated by other participants, a biopsy is to confirm that you actually have IPF & not something else.  I underwent a lung biopsy in 2016 and didn’t find it too difficult, however I believe there may be a less invasive procedure available.  If you are otherwise healthy, the recovery is fairly rapid.  You might check with your pulmonologist whether there is a newer procedure that would confirm a diagnosis of IPF without the traditional surgical biopsy.  I, too, have no symptoms other than a chronic cough and have been stable for the past 6 years.  Best of luck!

      Linda

    • #30486
      john styles
      Participant

      I say no, first if the ct scan is read by a radioligist who specializes in lung disease the biopsy is usually not needed. A lung biopsy can turn into a thoracodomy ( a real nightmare ) when there is plural disease around the lungs not picked up on the ct scan. A world class lung doctor told me after the biopsy when reviewing my records that he would have not done the biopsy.

    • #30492
      Mark
      Participant

      Martha

      when I was first diagnosed with ILD and PF, the polumnologist in Tucson wanted to do a full open lung biopsy.  I did a lot of research and talked to a few who had been through such, then asked this question

      why would I agree to have my chest cut into, my lungs cut into in multiple places, to get a scraping to verify the diagnosis, oh and the treatment would not change with or without the biopsy, not to mention I now have had my already damaged and compromised lungs, even more compromised, and add in a higher level of infection.

      my polumnologist here in St Louis asked me why one would do such?  He would do fine needle or robotic if cancer was in the game, but the newer high res CT scans can pretty much do the same as  a biopsy

      as everyone who has replied here, it is a discussion and decision that, in my view point needs to be talked about with your full medical team.

      as of now 6+ years later I still only get the ct scans twice a year.  Though this may change as I progress through the disease

    • #30494
      Regina Bolyard
      Participant

      Why not get a second opinion? It may be that you don’t present with all the classic features of IPF. Have you asked your doctor exactly why they want surgical biopsy? I will share my experience as an example:

      Honeycombing was not visible on my HRCT and I had an atypical amount of upper lung involvement. I also had a history of environmental exposures that are connected to HP. So I decided to go through VATS biopsy. That made it possible to rule out many pathologies. The amount of tissue collected via bronchoscopy or needle biopsy is usually pretty small. That limits the number of tests that can be done. Both the aforementioned methods of biopsy come with risks too. I didn’t want to go through either and have to ultimately have surgical biopsy anyway.

      Best wishes,

      Regina

      • #30498
        Marilyn Cellucci
        Participant

        Regina,

        I don’t have all of the classic symptoms of IPF, many odd ones. My pulmonologist thought that doing a biopsy would not be worth it since the biopsy would be atypical and not show anything useful. It is a mute point for me since I am being treated as though I have IPF anyway.

        Marilyn

         

    • #30497
      Nina Merendino
      Participant

      I have had a lung biopsy through my traechea where they took samples. Doctor still cant decide if I have IPF or UIP. I have no symtoms yet like cough or shortness of breath. I have ankylosis spondilitis, and fibromialgy. I had the test that goes through your nose and diagnoses GERD which I have. He still wants me to have a VAT? lung biopsy but frankly I don’t see doing yet with no symtoms. I swim and do water aerobic 30 minutes a day. My O2 is normal. So what do you ALL THINK?

      • #30503
        Linda Maguire
        Participant

        Nina,

        There are two types of IPF.  One is UIP (Usual Interstitial Pneumonia) and the other is NSIP (Non-specific Interstitial Pneumonia).  UIP has a less favorable outcome, but both are IPF & usually treated the same.  Were you thought to have IPF based on an HRCT  scan?

        • #31492
          Patrick Coghlan
          Participant

          @lmacguire I’ve been focused on this and other posts of yours, especially how your numbers have been stable now that you’re being treated for GERD.

          I have had occasional mild heartburn at bedtime, but usually just took a bit of Pepto and never thought much about it.  I didn’t even mention it to the pulmonologist, but now you have me thinking.  I no longer snack or drink alcohol within 2 hours of  bedtime.

          I’ve been diagnosed with NSIP.  My HRCT, examined by a few radiologists show some ground glass opacity and traction bronchietisis, and this was their conclusion.  One radiologist noted a minor hiatus hernia and oesophageal thickening (18mm vs 4mm) on one side.

          I had a bad exacerbation in the Fall, with a PFT at the onset (just happened to have been scheduled) with poor numbers and another PFT in Jan that showed a decline since 2019 but an improvement since the Fall.  To help preserve lung function, I have started OFEV.

          I’m curious if there are other similarities between my case and yours.  I’ve been clearing my throat for years, but also develop a persistent cough after a viral infection.  I’ve gone on Symbicort to clear the cough once it starts – a process that can take up to several months.  Lung scarring was identified on a chest x-ray in 2018/2019.

          I’m supposed to have a PFT scheduled in July.  If things are stable, I won’t really know if it’s due to OFEV or GERD avoidance after reading your posts.  Good question for the pulmonologist I guess.

        • #31559
          Linda Maguire
          Participant

          Patrick,

          I’ve been diagnosed with “silent” reflux.  I had no symptoms other than throat clearing, a chronic cough (which is what lead me on the path to the diagnosis of IPF) & noticing that I could no longer sing well.  I was referred to a  pulmonologist after an HRCT showed some fibrosis, & she sent me for about 40 blood tests to rule out an autoimmune disease & also sent me for a barium swallow, which came back strongly positive for GERD.  I did not believe it, because I have no heartburn, but a subsequent endoscopy showed that my esophagus was extremely inflamed!  I started on Prilosec, 20 mg bid, no food for 3 hours before bed & sleeping on an incline wedge to elevate my upper torso (all recommended by the pulmonologist).  I have also reduced any acidic foods, including coffee & wine, on my own.

          I am not on any anti-fibrotic medication & have had stable HRCT’s & PFT’s for the past 6 years.  (I’m receptive to taking them if there is any decline). My pulmonologist thinks the undiagnosed GERD MAY be the cause of my fibrosis, as I have no other risk factors.  There seems to be a strong correlation between GERD & IPF, although no clear cut research to support the connection.  Dr. Joyce Lee at UC San Francisco has done some research in this area & found in one study that IPF patients being treated for GERD had a median survival time of 65 months compared to only 29 months for those not on medication for reflux, although she notes that other factors could be involved.  I have read some studies that showed that up to 70% of IPF patients also have GERD!  Anecdotally, about half of the people in my IPF support group also have GERD.

          Reflux medications also have risks, so it would be important to have a clear diagnosis of GERD before starting medication.  A barium swallow is a very simple test, so you might want to talk to your PCP or pulmonologist about being evaluated for GERD, because if that is a contributing factor due to acid spilling over into your lungs, you’d definitely want to treat it!  Best of luck in getting this evaluated & in your IPF journey.  Linda

           

           

        • #31561
          Patrick Coghlan
          Participant

          I had a barium test about 30 years ago which was normal, but things could have changed.  I’ve certainly had some reflux over the years and a radiologist noted I have a small hiatus hernia, which probably doesn’t help.

          For now I’m cutting out snacks and and drinks after 8 p.m., which means no more Scotch at the poker table 🙁

        • #31573
          Linda Maguire
          Participant

          Chamomile or other herbal teas are ok, but wouldn’t be the same as Scotch! 🙂  My friends have adjusted to me eating early, only having 1 glass of wine, & bringing my own herbal tea.  After 6 years of doing this, I’m used to it.

          Do you play professionally or just for fun?  My nephew is a professional poker player.

          Might be worth having another barium swallow to rule out GERD, which can often happen as one ages, according to my Gastro. MD.  My throat clearing went away after starting Prilosec!

        • #31590
          Patrick Coghlan
          Participant

          Poker is just social (2x week online) but I was finding that my chest felt a bit congested in the morning after having a few drinks the night before, so I’ve just eliminated it for now.  It will give my liver a break now that it has to deal with OFEV.  Going for my first blood test in 2 weeks.

        • #31560
          Linda Maguire
          Participant

          Patrick,

          I’ve been diagnosed with “silent” reflux.  I had no symptoms other than throat clearing, a chronic cough (which is what lead me on the path to the diagnosis of IPF) & noticing that I could no longer sing well.  I was referred to a  pulmonologist after an HRCT showed some fibrosis, & she sent me for about 40 blood tests to rule out an autoimmune disease & also sent me for a barium swallow, which came back strongly positive for GERD.  I did not believe it, because I have no heartburn, but a subsequent endoscopy showed that my esophagus was extremely inflamed!  I started on Prilosec, 20 mg bid, no food for 3 hours before bed & sleeping on an incline wedge to elevate my upper torso (all recommended by the pulmonologist).  I have also reduced any acidic foods, including coffee & wine, on my own.

          I am not on any anti-fibrotic medication & have had stable HRCT’s & PFT’s for the past 6 years.  (I’m receptive to taking them if there is any decline). My pulmonologist thinks the undiagnosed GERD MAY be the cause of my fibrosis, as I have no other risk factors.  There seems to be a strong correlation between GERD & IPF, although no clear cut research to support the connection.  Dr. Joyce Lee at UC San Francisco has done some research in this area & found in one study that IPF patients being treated for GERD had a median survival time of 65 months compared to only 29 months for those not on medication for reflux, although she notes that other factors could be involved.  I have read some studies that showed that up to 70% of IPF patients also have GERD!  Anecdotally, about half of the people in my IPF support group also have GERD.

          Reflux medications also have risks, so it would be important to have a clear diagnosis of GERD before starting medication.  A barium swallow is a very simple test, so you might want to talk to your PCP or pulmonologist about being evaluated for GERD, because if that is a contributing factor due to acid spilling over into your lungs, you’d definitely want to treat it!  Best of luck in getting this evaluated & in your IPF journey.  Linda

           

           

    • #30526
      Randy
      Participant

      Hello everyone and hope your Thanksgiving was a great family day. The talk hereon biopsy is something I know a little about. Back in March of 2020, I was in the hospital for what they thought was Covid. After 3 months of being tossed from one hospital to the next, I finally landed in one that actually had an inkling to what may be wrong with me. The surgeon came to see me after getting checked in, took one look and said I know what you problem is. After some xrays she sheduled a biopsy. This was he first time I had seen my wife in over 3 months. They thought it was best if she was there because of my heart problems. Was a good thing they did, I died but thank God, I was revived. She went thru my right rib cage with a 1″ hole and took out a 4″ piece of what was left of my right lung. That was what the surgeon had seen in the xrays was the right lung pretty much not there. They kept part of the lung to study themselves and sent the rest to Mayo Clinic. It took a whole to get the results back, but they determined it was IPF.  So yes, I would saw yes on a biopsy, that way they will know for sure. I have been on 24/7 oxygen and trying to be normal.

    • #31516
      Colin O Driscoll
      Participant

      I had CHP. I have had bronchoscopies where they take small tissue samples and with lavage (washing one lobe of a lung with saline to pick up what the immune system was up to.)  These have been done under varying degrees of sedation (from nothing apart from local anaesthetic through to being virtually out with no recollection). None of them were pleasant but all day patient procedures, so not really that invasive and I would think a lot safer than the alternatives.

      Colin

    • #31593
      Margaret
      Participant

      I have been recently diagnosed with radiation induced pulmonary fibrosis after breast cancer treatment (on HRCT) which is a rare side effect. My pulmonologist was not very surprised as I had an upper GI bleed and was diagnosed with Barrett’s esophagus four years ago. I have never had any symptoms of heartburn, but started taking omeprazole then.  The pulmonologist thinks that I probably had subclinical ILD caused by silent GERD and the radiation therapy triggered the PF.

      He told me that he would expect to find pepsin in my lung tissue if he did a biopsy, but since my treatment (corticosteroids) would not change, there would be no point to doing one.  As far as he is concerned, biopsies are useful if the diagnosis is in question and treatment decisions need to be made.  He has noticed a significant correlation between GERD and ILD, but nobody has shown a cause/effect relationship yet.

      Margaret

    • #31624
      Jofac O’Handlin
      Participant

      Hi All,

      Especially, Patrick, Linda, and Margaret, and your conversation on ‘silent reflux / GERDS’, barium swallow tests, and hiatus hernia.

      When we are diagnosed it is natural to wonder what caused this disease. I have said it before, I blamed my time working in small Diesel driven Power Stations. Much vibration, creating dust, probably laden with asbestos! However, my sister did not work in any industrial situation, yet she died from IPF  at the age of 85.

      Now, she was diagnosed with refux some years (5 to 10) before her diagnosis with IPF. As a late diagnosis of her IPF she only survived 18 months.

      She was taking proton pump inhibtors (PPI) (Lansoprazole or Omoprazol), which I understand inhibit the uptake of calcium and thus likely to accelerate osteoporosis. She, in her late 70’s / early 80’s had a couple of minor falls which resulted in broken bones. At the time of my diagnosis I was also prescribed a PPI but found that they caused me GI problems, especially when eventually prescribed OFEV.

      Looking back on my history.  Like Patrick and Linda, I had a barium swallow test about 20 years ago. The why was that done? Well, the year before, when I’was 59, I had a bicycle accident which rendered me unconcious. The ambulance crew fitted a tongue restraint / breathing tube. When I came too in the hospital my throat was my main discomfort. Very sore,  About a year later I followed up with the barium swallow test, which proved that there was some small leakage into the wind pipe. This was regarded as minor and left to self heal.

      A few years later, in lifting a motor scooter into a motor home cradle, I suspect that I caused a ‘slight’ hiatus hernia.  About the same time I started with a regular runny nose, rhinitis. All this in the 10 years leading up to my diagnosis of IPF.

      So here I am nearly 9 years on from my preliminary diagnosis, 7 years from my lung wedge section biopsy that confirmed ‘the worst’! Now almost 7 years on OFEV, and a few months on Esbriet.

      My present situation. I do not take PPI’s, but do take standard anti acid tablets. Recently,, I found that I was waking in the morning with a sore throat. My routine was evening meal at 8 / 8:30. No wine, no sweet desert. Then at bedtime 11:00 ish, an anti-acid. It was on this routine that I in the last 3 months started with a morning sore thoat which wore off as the day progressed. Initially thinking that it was a cold or other infection. I then wondered if it might be reflux? So over the last 3 weeks I have been taking my regular anti- acid as I get into bed, also setting my alarm for 3 am and taking a double action (Gaviscon) type anti acid tablet at that time.

      This routine seems to have stopped the sore throat, and reduced the runny nose. By the way I have used wedge pillows to raise my shoulders, but, one inevitably slides down though the night!

      Margaret, you mension Barrett’s Esophagus, possible result of silent GERDS. It does make me wonder, and interested in having this checked. The reason being that a male cousin, on the paternal side of the family, meaning that we should share the Y chromosome, (unless a milk man got involved) suffered from cancer of the esophagus. With his problem, and my sister, I wonder about familial connections.

      As a friend of the Jewish faith used to say, ‘you cannot beat your genes’. Or in the 10 commandments, ‘even unto the fourth generation’. All this from an atheist!!!.

      Kind regards to the community. Joe

       

       

      • #31627
        Patrick Coghlan
        Participant

        I certainly have to wonder if the reflux I’ve had on and off might have been a factor, but with NSIP (my diagnosis) they don’t really know what the trigger could be, so I’m making sure that I don’t go to bed or lie down until at least 3 hours after I’ve had food, including alcohol, in case they were contributing factors.

        In the mean time, I am just planning 5 years at a time and taking the new meds.

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