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Have a question about Fibrosis in the lung.

Posted , 8 users are following.

angela98485
angela98485

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. Sometimes a little short of breath , a little chest heaviness. All he said was fibrosis. Is there a difference between scarring and Fibrosis. Eberyone thinks I should get anothee Dr. Im confused. Ty

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  • angela98485
    angela98485

    Posted

    Stopped smoking the day I was told I had copd 13 mths ago. My other dr said nothing about fibrosis.
  • bob80691
    bob80691 angela98485

    Posted

    Hi Angela:

    The Lipitor is presumably for the calcium build-up although I was diagnosed with calcium deposit in my coronary arteries and after a stress test Doc was satisfied my heart was ok.  No medication.

    If you want a more definitive diagnosis of the Fibrosis you should ask to see a Resprologist.  It appears to be mild.  There is a schoool of thought that links Acid Reflux disease with Pulmonary Fibrosis.  I'm convinced that's what caused mine.  I have had Acid Reflux for a number of years and take a prescribed proton pump inhibitor medication (controls acid formation) to keep it controlled.  You should ask your Doc about that.  Also keep you head elevated while sleeping.  I use 2 pillows (not fully on top of one another but but tilted at an angle).  I also take a Health Food Supplement called NAC which is freely available in most heath food stores.  600mg twice daily.  NAC is primarily used by those with chronic bronchitis but is effective with fibrosis also.  I swear by it.

    Good luck.

    • Butterfly2323
      Butterfly2323 bob80691

      Posted

      Hello Bob 

      never heard about nac

      I will go to see  if I find it

      thanks 

  • rich1mac1
    rich1mac1 angela98485

    Posted

    Fibrosis is just scar tissue. There are many types of fibrosis. There is Pulmonary, Liver, stomach. coronary, just about any where you have a scar could be  deemed as Fibrosis. You need to ask your doctor what is fibrotic and if needed to refer you to a doctor for that specific type. Example Pulmonary Fibrosis, ( PF), Pulmonologist. To simply say Fibrosis is just to non specific, for example there are over 200 different forms of PF, to which a Pulmonologist would be needed to define what type it could be. Since you said it was in your lung That would be my recommendation.
    • angela98485
      angela98485 rich1mac1

      Posted

      Thank you . I am calling a pulmonary dr Monday to make an appointment. I had someone tell me fibrosis is horrible and ypur life span was 3 to 5 yrs. I have a fibrosis spot on my upper lung. I was worried because I have a 12 year old and my husband is on his second battle with cancer. I need to be around longer. It may just be scar tissue that doesnt grow. Ty
    • rich1mac1
      rich1mac1 angela98485

      Posted

      Dear Angela a CT scan would tell a lot more, and most likely your Pulmonologist will order one , but he will also probably also have  lung function test done, that  will take about an hour with blood test. He will then know a lot more after that. Don't worry  about it until you have his diagnosis. Many forms of PF are curable, unfortunately  some are not with out a transplant. Some forms you will live 20 plus years with, depending on what your health is and how it can be treated. Hope for the best, but be prepared. Like my form there is no treatment, and no cure. But I am an older man and will not let that get me down. I will make the most of the time I have, and will pray that yours is a better diagnosis, and will give you time to enjoy Grand kids.

    • angela98485
      angela98485 rich1mac1

      Posted

      I had a scan done for a cancer thats how he found it. Said i had mild emphysema. Im due for another lung function test. In Dec of 16 mild copd with 79%lung function. Routine blood test said mild co retainer. Hope you are doing well.
    • Butterfly2323
      Butterfly2323 rich1mac1

      Posted

      hello Rich

      What were your pf symptoms 

      I am having. A cough of and on for at least 10 years 

      specually spring and fall for a week and went away 

      drs said it was allergy 

      2014 my cough came on april and lost very long 

      I went to see a lung specialist but cat was clear and I went for second opinion because the first dr was not sure about my pft but the numbers were good and the 2nd dr said I had not pfe

      i had bad allergy that was not taking care of environmental and the allergy dr said it went to my bronchial area . I had allergy shots for the last 3 years 

      I got better but my cough is back and this past March my dr sent me for a pft and the Lung capacity had gone to 69 from 84 3 years algo 

      now on June 4 I will see a lung specialist and a ct scan and a complete pft test will be done . The one on March was done only 1/2

      i don’t cough while I sleep 

      the cough comes in spurs and goes , I get a lot of thick white mucus 

      my chest get tied when I have the cough 

      I don’t get out of breath except when taking stairs 

      how do you star having pfe.

      i am scared and anxious because I want to know what is going with my cough and tickle on my chest , thick mucus 

      thanks for. Your attention to this 

      hope you are doing well 

  • virginia29538
    virginia29538 angela98485

    Posted

    Angela98485,

    There are centers of excellence (COE) who have pulmonary Drs. who specialize in pulmonary Fibrosis.  Only these pulmonary Drs. can differentiate with tests, corroborate with radiologists and pathologists and expertly read scans of the lung.  Most can read the scans and make a diagnosis.  Go to the web site for Pulmonary Fibrosis and you can see them for your area.  Lots of treatment options, for some types and help available.  

    Good luck!  , VA

    • rich1mac1
      rich1mac1 virginia29538

      Posted

      Virginia, other pulmonary doctors can diagnose the Different types of PF today, true they may not be able to do them on site, very few, even COE's can. My form was sent from a top center to the University of Virginia, where a leading Diagnostician in the U.S. had to diagnose it. But mine PPFE is very rare and few doctors have even seen it. With over 200 different types of PF it is difficult to determine sometimes what type it is if any. Primary is first going to a Pulmonologist to start the progress, they will determine what is needed in order to diagnose, if a more advanced Facility is needed most will offer a referral to a specialty center. It's not wise to waste time and money until you know what your dealing with.

    • virginia29538
      virginia29538 rich1mac1

      Posted

      Rich1mac1

      My husband was also diagnosed with PPFE at UVa.  However before they could completely diagnose his disease some of the blood samples were sent to John’s Hopkins for an additional diagnosis of telemere disease.  This is a rare genetic disorder.  John’s Hopkins has a very good research team studying this disease.  So far it is incurable and very rare.  

      If you don’t mind sharing how your diagnosis of PPFE , I would like to know if this was done through biopsy and high resolution scan.  My husband had biopsy and it came back at the time to be no IPF, but a yr later was rediagnosed as PPFE when his PFT’s has a noticeable drop.  He has had scarring in lower lungs since 2011 and still is not on oxygen and does anything he wants to do.  We are blessed this far that it is a slow progression. Hope yours will be too!  Va

    • rich1mac1
      rich1mac1 virginia29538

      Posted

      I had a VATS procedure on the left lung, all the diagnosticians here could see was abnormal and unable to define, so it was sent to UVA, and a week later it came back as PPFE. The surgeon at the time of Biopsy who was a Heart and Chest surgeon could only diagnose it as IPF.
    • virginia29538
      virginia29538 rich1mac1

      Posted

      Thank you,  it sound so like you got a more definitive diagnosis which is important for treatment. Do you have any idea as to cause?  Sometimes after considering past history there is a clue, but my husband’s Dr. believes the telemere disease caused is fibrosis and the scarring in the lower lung has been there a long time and is no longer progressing.  
    • rich1mac1
      rich1mac1 virginia29538

      Posted

      No definitive cause, but GERD is suspected, as I have had it for 15 years prior, and it was made worse when I became Diabetic Type 2.
  • tracyglenn
    tracyglenn angela98485

    Posted

    I was told i have fairly severe copd,

    Whats that suppose to mean?

    • rich1mac1
      rich1mac1 tracyglenn

      Posted

      Tracy, COPD is an obstructive form of Interstitial Lung Disease, it is different from Pulmonary Fibrosis. PF is a restrictive lung disease. Where as COPD makes it difficult to breath in oxygen, Pf makes it difficult for the lungs to exchange oxygen in the lungs. COPD is detected in lower SPo2 blood levels, PF is harder in that SPo2 can read low but not low enough to account for oxygen supplement, it may still require Oxygen in that the Co2 may be higher, in that the lungs cannot properly exchange O2 for CO2, causing the organs to not receive the proper amount of oxygen. That in turn cause's the heart to pump faster to try and increase blood flow to those organs. Hence Heart Failure is often a cause of some PF's. 

    • rich1mac1
      rich1mac1

      Posted

      I should say Heart is more properly a result of PF, not a cause. Sorry no edit buttons on this forum.
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