How do you get diagnosed with IPF?

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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 pulmonologist suggested me to do a CT-Scan and the result says I have IPF with bronchiectasis in both lungs.

Are these tests reliable enough to prove that I have IPF? at the age of 25? I am still in disbelief..

Thank you

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  • Posted

    The answer is probably. I was a Registered Respiratory Therapist 50 years ago as I worked my way through UT-Austin. (Because I worked the 11-7 night shift I was give a shift bonus that amounted to a 0.25% increase over my base —— the minimum wage of $2.00 per hour yes it was a whole Nickel!😉wink

    Even as removed as I am from that time I can still hear the distinctive “ripping Velcro sound of my IPF. In my case it was confirmed by a lung biopsy (extremely painful) which settled any doubt. If you’re concerned I’d recommend getting one. 

    My biopsy was in Feb of 2011 and the x-rays, scans and other tests indicated about a 40% loss of lung capacity. I entered hospice the first week of December 2017 but I’m still able to drive from Austin to Ruidoso, NM at an altitude of about 7000 feet. Of course I have to crank up the O2 to around 6 and I’m VERY limited up there but it’s been a special family  place all my life and I just love there. I hopping to go in a week or two and I do hope it’ll snow. 

    I firmly believe that I’ve lived this long (although as a working on it Christian I’m more than ready to go home… but my wife of 49 this Jan,  is a loving anchor to keep me here) is because I’ve been determined in my exercise (at the time I was diagnosed I exercised 42 min 3-4 days a week down from 5-6) even though fatigue causing the drop off is why I began looking for answers. The second factor is my wonder drug Modafinil™? . It’s a drug given to shift work or people with Narcolepsy (people who fall asleep without warning.) It is giving me the energy to continue to ride my recumbent bike for an hour TV show, scanning commercials, at least twice a week. It is hard but I’m still here, four years after my original sell by date. 

    I wish you the best, and if you’re comfortable, and with your permission, I’ll lift you up in prayer with my Bible study group and where I’ve been doing Kairos Prison Ministry for the last 21 years. 

    God bless you. 

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  • Posted

    Most of the time a scan can indicate Interstitial Lung Disease, and a lung function test can narrow it down to a obstructive or a restive disease if they are present. But to define it to a specific NSIP disease a biopsy is generally the only way to do that. There are many different types of NSIP, of which IPF is only one of them. My pulmonologist had me take a VATS proceadure, ( VIDIEO ASSISTED THORASIC PROCEADURE), which turned out to be a good thing in that I am now sure that I have PPFE which is a different form of IPF that does not respond to Esbeseret, or Ofev, which is used in IPF. and cost about $96000.00 a year to take. Unfortunately for me there is no treatment or cure. but it pays to know the difference. Better luck with your diagnoses, but be sure before you start ask you Doctor about all your questions and read up on line about the different types of NSIP you might find. Don't pay a lot of attention to all the symptoms as many will say the same thing's.

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  • Posted

    Hi Melianite:

    Even though you are only 25, you can contract IPF.  In your case the CT-scan shows signs of IPF along with a form of Bronchitis.  The question this poses is:  which is causing your symptoms?.  Getting a finite diagnosis of IPF can be tricky and as other replies have suggested, a lung biopsy is advisable to pin down the diagnosis.  I would also suggest you ask your lung specialist to arrange for a Lung Function Test.  This is actually a series of breathing tests to measure your total lung capacity and other lung performance factors and whether your condition is Restrictive or Obstructive.  There are lots of articles on the internet on lung function tests and how the results can be interpreted.  The one strong piece of advice I can give you is to educate yourself as much as you can about IPF and about the new medications on the market that can slow down its progression.

    Good luck to you and stay in touch. 

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  • Posted

    Melianite, Yes there are way's to determine if what you have is IPF, but it could also be a number of other that fall under is known more as NSIP, the only way to get a firm diagnosis is with a Biopsy. 

     

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  • Posted

    [Respiratory function and alveolar biological changes under the effect of CDP-choline in pulmonary interstitial pathology: pulmonary fibrosis and sarcoidosis].[Article in French]

    Pacheco Y, Douss T, Pujol B, Revol A, Vergnon JM, Biot N, Brune J, Perrin-Fayolle M.Abstract

    Various anomalies of pulmonary surfactant have been described in relation to acute respiratory distress syndromes, hypersensitivity lung disease and pulmonary sarcoidosis. Phosphatidylcholine (PC) is the essential phospholipid component of pulmonary surfactant. Cytidine diphosphocholine (CDP-choline) is an essential intermediary in the biosynthesis of PC. The authors studied two groups of patients: one group consisted of diffuse interstitial pulmonary fibrosis and the other consisted of pulmonary sarcoidosis with parenchymal involvement. They observed quantitative and qualitative abnormalities of the phospholipid fractions of surfactant and more particularly of PC. The finding of a marked decrease in this phospholipid, especially in the cases of pulmonary fibrosis, justified the study of the therapeutic effects of CDP-choline. After one month of treatment with this substance, at a dose of 1 g I.M. per day, the PC fraction had returned to normal and, at the same time, there was an improvement in the PaO2 at rest and after exercise. Long term administration of CDP-choline appears to be valuable in the maintenance of the phospholipid equilibrium of pulmonary surfactant and in the improvement of the quality of alveolar gas exchange.

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