Linda Maguire

Joe,

I agree with Colin.  A lot can depend on the cause of the fibrosis as to whether it will progress or not, but it sounds like you’re in great shape at the moment, so I wouldn’t stress about the fibrosis.  It sounds mild, but should probably be monitored every 6 mo. to a year with a PFT & 6 min. walk & annual HRCT to observe for any p…[Read more]

According to an article in this forum on Wednesday, Esbriet is now available as a generic through Sandoz.  Not sure when the pharmacies will have it available, but the cost should be much less.

Pam,

Sorry to hear about your IPF diagnosis.  I was diagnosed in November, 2015 & was totally shocked to read the 2-5 year prognosis!  I cried every day for the first 6 months.  My pulmonologist is very pro-active & ordered bloodwork to rule out about 40 autoimmune disorders since I had no precipitating factors.  She also referred me for a bar…[Read more]

Pam,

Sorry to hear about your IPF diagnosis.  I was diagnosed in November, 2015 & was totally shocked to read the 2-5 year prognosis!  I cried every day for the first 6 months.  My pulmonologist is very pro-active & ordered bloodwork to rule out about 40 autoimmune disorders since I had no precipitating factors.  She also referred me for a bar…[Read more]

Breathlessness

Cough

Frightening

Overwhelming

I think an HRCT is pretty good at diagnosing IPF.  My pulmonologist wanted me to have a lung biopsy to be sure.  After the biopsy confirmed IPF, I went to National Jewish Hospital in Denver for a 2nd opinion, & they didn’t think the biopsy was necessary.

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 an…[Read more]

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 au…[Read more]

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 au…[Read more]

Kris,

If you have a definitive diagnosis of IPF, taking Ofev or Esbriet might help.  It sounds as if your shortness of breath is progressing rapidly!  Be aware that anti-fibrotic meds don’t reverse fibrosis, they only slow the progression.  I would try to get more information from your pulmonologist about why your breathing might be de…[Read more]

Charlene,

On my first visit with my pulmonologist, she told me she was sure I had IPF based on my HRCT & recommended Ofev or Esbriet if a lung biopsy confirmed the diagnosis.  The VATS lung biopsy indicated a UIP pattern of IPF, however I chose to get a 2nd opinion at National Jewish Hospital in Denver, CO.  They gave me a thorough 5 day w…[Read more]

Charlene,

On my first visit with my pulmonologist, she told me she was sure I had IPF based on my HRCT & recommended Ofev or Esbriet if a lung biopsy confirmed the diagnosis.  The VATS lung biopsy indicated a UIP pattern of IPF, however I chose to get a 2nd opinion at National Jewish Hospital in Denver, CO.  They gave me a thorough 5 day w…[Read more]

Kris,

Are you seeing a pulmonologist & have you had a high resolution CT scan?  As mentioned by Don, there are multiple types of ILD’s and you don’t want to start an anti-fibrotic without a definitive diagnosis of IPF/PF.  I, too, had a VATS biopsy, however if there is a clear cut pattern of IPF on your HRCT, that may not be necessary.  I was di…[Read more]

The 3 Chinese exercises referred to by James Christenberry showed good results at 6 & 12 months in a study published in the Annals of Palliative Medicine with improvements on PFT numbers compared to the control group (google Annals of Palliative Medicine Breathing Exercises for IPF to see the exercises & study results).  Exercises are easy to…[Read more]

I was diagnosed with “silent” reflux shortly after my IPF diagnosis.  I raised the possibility of fundoplication with my gastroenterologist and he advised against it.  He has been treating the GERD with Prilosec.  So far, all of my CT scans have remained stable over the past 6 years.  Good luck to your Mom!

Gail,  I agree with the response from Doug that an XRay is not confirmation of IPF.  One should  see a pulmonologist who will generally recommend a CT scan, a pulmonary function test, & a 6 min. walk test before diagnosis is made.  Often a lung biopsy is also recommended, however I believe the current thinking is that a CT is enough.  In my case…[Read more]

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]