Linda Maguire

Lora Lee,

I have IPF but am not on anti-fibrotic meds at present.  However, I occasionally have meatless meals and found an enchilada recipe I love.  It is called Poblano & Black Bean Enchiladas by Lala & Zoe.  It includes cheese & some heavy cream on top, however I think you could easily eliminate those.  It is a very tasty recipe if you lik…[Read more]

In the U.S. it is typical to do a CT scan & a pulmonary function test (PFT), then sometimes a biopsy to diagnose IPF.  A CPET is not typical here, but could give lots of information about how your body is utilizing oxygen.

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?

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 pu…[Read more]

I did a bit of online research about the N115 spray, as it sounds very promising.  Apparently they have completed Phase III trials & Empthy is looking for a pharmaceutical company to manufacture it.  It will need FDA approval first, so it may be awhile before it is available in the U.S., but if it can improve lung function/breathing & cough it s…[Read more]

I would suggest walking.  Go at a slow pace & for whatever amount of time that you can tolerate to start with & build from there.  A gentleman in my support group couldn’t walk farther than his mailbox when he started, & now he is walking for a couple of miles daily!

I used to clear my throat frequently, but after being diagnosed with “silent” reflux (no heartburn) and taking Prilosec to treat it, the throat clearing went away.  Apparently it is often a symptom of GERD.  My pulmonologist believes the previously undiagnosed GERD is what caused my IPF, & I have been stable since my diagnosis in 2016 and c…[Read more]

Don,

I also had a VATS lung biopsy in Feb., 2016 here in VA, which led to a diagnosis of the UIP type of IPF by the surgeon.  Seeking a 2nd opinion, I went to National Jewish in July, 2016 & went through 4 days of testing & consults.  NJH also did a bronchoscopy to rule out HP.  Although I don’t really understand some of the terminology, the re…[Read more]

Christie,

I’m not familiar with a “company” called Grand Rounds.  Each medical school/training facility usually holds a “Grand Rounds” meeting monthly where their MD’s & other staff meet to discuss a clinical case of one or more patients or has a presentation on a timely topic.  In my situation, the NJH MD that was consulting with me p…[Read more]

Christie,

I’m not familiar with a “company” called Grand Rounds.  Each medical school/training facility usually holds a “Grand Rounds” meeting monthly where their MD’s & other staff meet to discuss a clinical case of one or more patients or has a presentation on a timely topic.  In my situation, the NJH MD that was consulting with me presented m…[Read more]

Christie,

I’m not familiar with a “company” called Grand Rounds.  Each medical school/training facility usually holds a “Grand Rounds” meeting monthly where their MD’s & other staff meet to discuss a clinical case of one or more patients or has a presentation on a timely topic.  In my situation, the NJH MD that was consulting with me presented m…[Read more]

Ping,

My pulmonologist was Yale trained & very familiar with IPF, however because I had no risk factors, she sent me for about 40 blood tests to rule out any auto immune disorders, as well as a Barium Swallow (an easy, non-invasive test) to rule out GERD.  I had no heartburn or sx of acid reflux other than a cough, so when the test came back…[Read more]

Ping,

I’m so glad you had a positive experience at Cleveland Clinic!  Although I had a surgical biopsy & was diagnosed with the UIP pattern of IPF here locally, the National Jewish MD’s didn’t think I fit the usual pattern for IPF & took my “case” to Grand Rounds there, & their other MD’s agreed that I wasn’t “typical”.  I was diagnosed 5 1/2 y…[Read more]

Bernard,

I agree that the Baylor study using Nexium to treat pulmonary fibrosis looks very promising.  Keep in mind, though, that the study was done using lung epithelial cells in a laboratory, not actual patients, & the authors noted that further studies were needed to confirm their results.  While they state that higher doses than normally u…[Read more]

I live in VA & had a 2nd opinion at National Jewish in Denver 5 years ago.  They scheduled me for 4 consecutive days of tests.  I had all my records, lung biopsy results, PFT’s, etc. sent ahead of the visit.  I initially met with a resident MD & his supervisor, then had tests that afternoon & for the next 3 days, with a “wrap-up” with both docs on…[Read more]

Upon being diagnosed with IPF 5 1/2 years ago, my pulmonologist sent me for numerous tests to rule out auto immune diseases, GERD, etc.  Much to my surprise, I was diagnosed with GERD, which was “silent” (no outward symptoms).  Since then, I have been on Prilosec 20 mg twice daily, which has helped my cough & throat clearing, as well as possibly s…[Read more]

Upon being diagnosed with IPF 5 1/2 years ago, my pulmonologist sent me for numerous tests to rule out auto immune diseases, GERD, etc.  Much to my surprise, I was diagnosed with GERD, which was “silent” (no outward symptoms).  Since then, I have been on Prilosec 20 mg twice daily, which has helped my cough & throat clearing, as well as possibly s…[Read more]