Linda Maguire

A diagnosis can be made with a CT scan & is not dependent upon PFT, from what I understand.  The PFT gives information about what aspects of breathing & lung function are problematic & which are normal.  You might practice a long exhale with your Dad while he is relaxed & not having to “perform”, like during a test.  Maybe if you can de…[Read more]

Although the covid vaccine may not prevent you from getting covid, it lessens your symptoms & could save your life!!  Those of us with IPF are at higher risk & more likely to be hospitalized or die from covid, so the vaccine is an important protection.  Duke University says it is NOT necessary to wait for a mammogram after getting vaccinated.  I…[Read more]

Allan,

Have you been evaluated for GERD (Reflux)?  When I was diagnosed with IPF 7 years ago, my newly acquired pulmonologist sent me for a myriad of tests, one of which was a barium swallow to rule out GERD.  I had had a dry cough for about 5 years prior, which was what eventually led to my diagnosis, but I had no symptoms of reflux!  I had lo…[Read more]

Steve,

I live in Virginia Beach but the support group covers Norfolk, Virginia Beach, Chesapeake & Suffolk.  There is another support group nearby for the folks in Williamsburg, Hampton & Newport News.  VCU in Richmond has recently been named as a Care Center, so we now have a Center a couple hours away instead of going 4 hours to UVA or D.C. f…[Read more]

Wesley,

Is there an IPF support group where you live?  I live in Virginia & there are a number of support groups for IPF patients & caregivers that meet monthly & share information, have speakers, and provide support for each other as we deal with this disease.  Meetings have been via zoom since the pandemic, but we previously met in person.  I…[Read more]

After a trip to Croatia in July, 2022 where a few of the members in our tour group came down with Covid (& were subsequently isolated),  I tested positive with Covid 2 days after we returned.  I had had the 1/2 dose 2nd booster 3 weeks before the trip.  My only symptoms were nasal congestion & fatigue.  I credit the vaccinations & boosters wit…[Read more]

There have been several alternative treatment suggestions as well as exercise mentioned on this forum.  Some folks recommended taking green tea extract, however I have not seen any large studies that support this.  On the other hand, there is some research to support a series of Chinese breathing techniques that have shown good results in IPF p…[Read more]

I went to National Jewish Health in Denver, CO 6 years ago for a 2nd opinion about my diagnosis of IPF.  At that time, they were doing a study of familial IPF.  Anyone interested in a possible genetic connection might contact them to see if they are still recruiting for the study.

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]